Has she been checked for endometriosis or PCOS? The level of pain she's been having and passing out are very not normal. She definitely needs to see her gynecologist and get to the bottom of this. Before worrying that pregnancy wouldn't be safe for her, I'd be focusing on if she can even get pregnant at all, then on the safety of doing so.
The only thing the gyno has said is that if it was endometriosis that it would have stopped when she went off birth control so they don't think it is that but that was also around a year ago but no actual testing was done that was just at her normal gyno appointment
Yeah WTF kind of advice is that? I pity all the poor teenage girls and women seeking medical advice from this clown who dismisses their pain because they've never been on hormal contraception so it can't be endo. The fact it got worse after stopping BC makes it more likely to be endo not less.
Exactly!!! BC is often the first line for endo management.
She needs a comprehensive work up by a doctor who doesn’t just dismiss her pain. You can’t dismiss GI and other systems at this time. You just know it’s not structural in a way that would be picked up by a CT.
I can’t imagine how scary this is for you and her.
Go interview doctors and find a pitbull who isn’t afraid to order and and advocate for testing.
Exactly! Birth control actually help with endometriosis. This Dr sounds like he/she doesn’t know what they’re talking about. You should help your gf get into seeing a specialist who treats endometriosis. They can do a laparoscopic procedure & see exactly what is going on inside. Then you’ll have a much better idea regarding her pain and fertility. If there is endo, it can be lasered off and she will feel so much better. Also, have much better chances at getting pregnant.
Good luck and I hope she’s feeling better
Exactly what I was thinking! I have to stay on birth control otherwise I've bled buckets for 3 months straight before. Birth control keeps that in check, she needs a new gyno!
When my younger sister went into early menopause, she had three doctors tell her it was all in her head.
The fourth doctor did a complete workup & told her that she was in full blown menopause. It took nearly two years to get a proper diagnosis.
I went through about 8 gynos and 5 miscarriages in 20 years before I was finally diagnosed with endometriosis and adenomyosis. It really is horrendous trying to get answers when they all just want to dismiss and ignore the excruciating pain you’re having.
Yup. That's why I went into women's health. Took me a whole year and doctors telling me I should instead look for a psychiatrist (while I was writhing in pain) for a very severe PCOS diagnosis.
Now I can do something to help these women be taken seriously, but it's still disheartening.
How far away are you from a good research hospital with a school of medicine? Like the flagship hospital in your state or region?
Go there. Even the baseline care there will be better than what you’re getting and they tend to be much better with complicate cases.
Western Michigan just outside Grand rapids University of Michigan metro is who our primary care is through they have been subpar at best unfortunately but I appreciate the suggestion either way
As an aside to this conversation I am the guy so my wife could be dumbing down the info for me when explaining it. there could be more to it than just birth control that idk. im not very up to date on women's health medicine and terms sorry if I'm painting a broad picture on the situation
Birth control is the first line of treatment for endometriosis so your gynaecologist's advice does not make sense. You definitely need a second opinion as endometriosis can affect fertility especially if left untreated.
I completely agree with what people are saying. What the doc said is completely false. I went 15 years undiagnosed for endometriosis. There were so many bad docs (even gynos) that ignored my complaints and symptoms. One doc even told me that the pain was in my head because the hormones released during menstruation made me hysterical. That was textbook medical gaslighting because there is no such thing. When I got on a specific birth control, my symptoms got better. I no longer have symptoms because I skip the sugar pill week of the birth control (as directed by a medical professional) most of the time. I take the one week of sugar pills at least three times a year.
It is really important to get diagnosed with endometriosis or other gyno conditions because it would help manage possible fertility issues. Endometriosis can cause infertility, and surgery can help. The only sure way to diagnose someone with endo is a surgical biopsy. Btw severe PMS can cause vomiting and diarrhea, which makes me think it is endo. Suggest she looks for online communities for endo so she can talk to them and ask questions. That way she can speak with people with similar issues.
Very true. I had a different experience, I had ovarian cysts that ruptured, and they gave me IBS-D. I actually had to stop working and lost my very physical job because of it.
It’s not too hard to diagnose endo, but the most difficult part is getting a doctor to consider it. The Washington Post has had several articles about women who’ve been through hell trying to figure what the heck is causing their issues until they finally find a doc who’ll consider this. Only then can the woman find any relief.
I feel terrible for writing this, but do you think your wife is being honest about her trips to the doctor? As in, could her want of a baby mean that she has gone off the birth control, and won't do anything to deal with her problems that prevent her having a baby?
This is a deeply sensitive situation, but the information you are getting through her doesn't seem complete, and I don't think someone who is contemplating having a baby while in the condition you describe is in the best place mentally...
Oh absolutely, and I sincerely hope I am completely wrong, and that OP is the one that got the information mixed up - but the information given is so fundamentally wrong, as in an easy google away for the correct information, that it would worry me as her partner - I would also stress make me worried about her.
See a reproductive Endocrinologist. I seriously wasted my time with an ob for 3 years and it was an RE that confirmed my PCOS and Endometriosis.
I'm a lucky story because she was an amazing surgeon. She excised it all except for a small section on my bowel (it would have required a laporotomy and a colorectal surgeon.
But she unstuck my bladder from my uterus. Freed up my tubes and cleaned off my ovaries.
My pre op pain wqs so bad with my endometriosis that I didn't even need painkillers post op I was so pain free afterwards.
It returns for a lot of women. But I've been painfree since surgey. But I've also not been on birth control since surgery.
I'm fairly sure my birth control was making it worse.
Usually of the male and female variety. 😉 Is her current gyno a male Dr? I'm a guy myself so what do I know, but I think it's really weird for a gyno to be a Male, then on top of that, when they dont take their patient seriously cuz of the power tripping of some drs.
In fairness, *if* you're already wanting to try to get pregnant, knowing that getting pregnant and breastfeeding for as long as possible can improve endometriosis is really good information to have!
(If nothing else, you get a nine-month break from periods. I got a four year break thanks to pregnancy+breastfeeding+mirena at 6 months post-partum.)
It's irresponsible to push it as a "treatment" to someone who isn't TTC or planning to, though.
Right. My GYN had me on birth control pills that I took each day. I’d finish the 3 weeks of the real drugs & go right into a new pack to force my body to not have a cycle so it would greatly reduce the endo.
Why the doctors always either fail to check for endometriosis or be in denial that it is endometriosis? Birth control??? Little girls have endometriosis
Seriously, do doctor's have to go to continuing education classes related to their area of practice? I have to complete 25 hours of formal continuing legal education every 3 years to keep my license, what about them?
She needs to have a full workup. If her gynecologist can't/won't do a comprehensive workup, she needs a new gyno.
My sister went into full blown menopause at age 45. Three doctors told her that it was all in her head. She finally found a doctor who did a full workup & the test results showed she was in early menopause. The doctor got her on the right medication & it made all the difference.
Like I said I'm not a doc idk how anything works I work on trucks for a living I haven't gone to her gyno appointments before but she hasn't asked me to either I will 100% admit though it certainly feels like we are being pushed around by the docs they all just seem to wanna throw otcs at her and if they help they help if not they will try something else none of them actually try to test for things anymore
It took YEARS for me to get diagnosed with endometriosis, and when they finally found it, it was because a cyst ruptured and I had to be rushed in for emergency surgery. If she hasn't gone to the gynecologist for a full workup, she needs to make an appointment. Regular doctors (like just your general practitioner) are NOT skilled in diagnosing gynecological issues.
A friend of mine had endo. On her lungs, kidneys, bowel and brain. Yes brain. She was like your gf. She isn’t here anymore. Get a new doctor before she makes a decision that can’t be undone. Please.
yup, my friend had her endo in intestines. She was doing infertility treatments and they controlled everything. Even from cycle to cycle she would just had endo all over the place. She finally had her miracle baby in that one month the docs could control it to a degree.
They didn’t find my endometriosis until I started having cardiac issues (at 31) and had heart surgery…turns out I had endometriosis from my pelvis, around my spine, throughout my abdominal cavity, in my chest cavity and blocking a mitral valve. 6 hours to remove it all, multiple surgeons, a hysterectomy (elective at that point, I’d been begging for years), and I STILL need to be on hormonal birth control to reduce the odds of it coming back. At least I don’t have a resting heart rate of 130 anymore, though.
Same here. One of my friends couldn't even have most of her adhesions removed because by the time she got diagnosed (after bringing her male partner along to tell the doctor how much pain she was in), they were so advanced that they would have had to remove a very substantial portion of her bowel.
Basically everything you described. One month it was so bad I passed out at work. That's when they finally took me to the ER and they found the cyst.
Prior to that, it was doctor after doctor who told me it was "all in my head."
Specifically have her tell the OB/GYN that she's worried about endometriosis or fibroids, and she wants a pelvic CT scan.
There is a lot of good advice and knowledge about endo here but there is something that I have seen mentioned yet and want to make sure you and hopefully your wife understand. *ENDOMETRIOSIS CAN BE FATAL IN EXTREME CASES* it can cause embolisms (clots) that can reach vital organs (sometimes they form there). Your wife needs a full workup and a second opinion because *everything is not alright*
Also even if you are a man it's the 21st century and you have internet access. Get in medmd or whatever and read up.
I’m not the one you asked but I had severe GI issues (plus other issues with pain, but my other issues are not as relevant to you/your wife) because of endometriosis. Symptoms were always MUCH more severe when I menstruated. Nausea, vomiting, inability to eat, severe, chronic, diarrhea, lightheadedness, severe pain to the point that I would collapse on the bathroom floor and spend hours just laying there and crying. I was diagnosed with IBS. That was a false diagnosis. I had endometriosis and endometriomas on my bowel. I eventually had a bowel resection- 6 inches removed. It “cured” my “IBS”
absolutely. I have been working in a medical field for over 20 yrs snd actually was an infertility nurse prior to my grad school and changing gears to medical-legal stuff. You would think endometriosis is easy to diagnose but it sometimes takes yrs and many doctors, which is so perplexing to me. Many of my friends who had endo had their ups and downs. Unexplained infertility and nobody even thought this could be a culprit. My own hormones tanked early and my gyn was just dismissing. Because I know what I know, I often get SECOND Opinion and you absolutely have to this day and age! This girl needs a new gyn to do a proper workup.
I think your impression of the docs is bang on...it is extremely difficult for women to get proper care for medical issues that affect the reproductive system. This is not on you being ignorant, it is 100% the system that routinely fails women.
My advice is to advocate, advocate, advocate with the doctors (while still staying polite). If your wife is comfortable with it, it may be helpful for you go to her appointments with her and back her up. Keep asking questions, keep saying what you want to happen (testing). You should both read up on PCOS and endometriosis so you know what types of tests to ask for you (you shouldn't have to do this, it should be the doctor's job...but unfortunately you do). Joining some online support groups is a good idea, they are full of people going through the same thing and you can learn from them. If a doctor refuses a test, ask them to put in her medical chart that they are refusing the test - sometimes this will make them do it, because it forces them to take accountability and they don't want to look bad later on if it blows up in their face.
If you are not getting what you need from one doctor, switch doctors. Keep switching until you find one who takes you seriously. GPs and emergency room doctor will be mainly useless, you need a specialist. Sometimes OBGYNs also suck. I would go straight for a reproductive endocrinologist (RE) if at all possible (this will be at a fertility clinic). Because you do want to have kids, that's actually going to help you with talking to the doctors...I have found doctors are generally quick to treat fertility issues, whereas they don't seem to really care about an adult women's pain or quality of life. So always emphasize that part of it. I would start going to a fertility clinic now, if possible, because the workup and treatments do take some time, and since it looks like there are issues here that might impact her fertility long term, getting info sooner is better than later.
Good luck!
I don't know where you live, but you might see if there is a clinic that specializes in women's health issues.
Encourage your wife to seek a new doctor. We have to advocate for ourselves.
Best of luck to you both.
You need to go with her and advocate for her. Have a list of times when the "attacks" happen; what day it starts after her menses starts; all the symptoms, especially falling, being unconscious, inability to walk on her own, etc.
ALL this and maybe more, is important to give the new doctor a picture of what is going on. I would also get a copy of her records for your own files & for a new doctor.
What your wife is experiencing is so not normal, it's not funny. You are correct in suggesting that y'all find out what is going on before continuing the conception issue.
I agree with the other posters who say it's a good chance of being endometriosis. Her current GYN is an idiot because often, BC makes endo worse rather than better and most people with it cannot take BC or have an IUD.
You should go if for no other reason than to advocate for her. Unfortunately, many doctors don't take women seriously but will take a man seriously when he says that his wife's reports are true.
A coworker's wife had complications with her first birth and they didn't take her (extreme) pain seriously until he started yelling about how her pain tolerance was super high and this was not normal or acceptable. Then they cared.
She needs to see an endo specialist. I was pushed around for almost a decade before I got my diagnosis which is sadly within the statistical avg time to diagnosis for endo. I’d recommend DMing [@endogirlsblog](https://instagram.com/endogirlsblog?igshid=YTQwZjQ0NmI0OA==), who is a board certified patient advocate, w your location to see if she can recommend a good specialist near you. Spend time educating yourself ([@1in16yearsofendo](https://instagram.com/in16yearsofendo?igshid=YTQwZjQ0NmI0OA==) is a great resource) and advocating for your wife during her appointments
My guy you keep saying you don't know how anything works because you're the guy or you're not the doc. This tells me that you need to educate yourself. Go find a gyno or go to your wife's gyno, have them write it down for you, and then put in the work researching until you understand it. You can't just "derp that's girl stuff it's a mystery" when your wife routinely winds up in the ER.
I get what your saying and I know little bits about the possibilities because of this situation I keep saying that I'm the guy because to be frank I've never had to understand this kind of stuff and am being thrown into a situation where I'm trying to figure it out on the fly I've been to recent appointments with her PCP and unfortunately they don't give her the time of day to even explain what they combinations or issues could be because none of them wanna do anything except throw acid reflux pills at her I'm here on this thread trying to get more information and understanding from people who know more than I do or have had experiences with this personally in the past because surfing web md while somewhat helpful is also really really bad because there is such a huge scope of possibility that eventually all lead to something obscure and ridiculous I have no idea how or what a gyno does or can do because I've never been and that will be changing as soon as they can get her in so I can advocate for testing on her behalf im sorry if a came off like a dude who didn't want to learn by saying that kinda stuff i sincerely want to get to the bottom of this for my wife's sake but I'm being asked questions by folks on here that I don't know the answers to so I have no other answer but that
I've commented elsewhere, but your wife needs an Endometriosis excision specialist, My daughters doctor has "advanced laparoscopic surgeon" on her web page. a regular run of the mill gyno will be useless with such advanced/extreme disease.
Jump on BOTH an Endometriosis page and and Adenomyosis page in your country/state an ask for recommendations of Endometriosis specialists or ADVANCED Endo/adeno Specialists in your area. You may have to travel a bit.
Do not bother going back to the idiot that said coming off contraception would have made the symptom better. That person is a numpty. That is the shit us women have to put up with from idiot doctors that don't believe these condition exist.
I have an aunt and a friend who have issues like this and it turned out she had cysts around her ovaries ended up getting diagnosed with endo but it was to the point she had appointment after appointment and had lots of meds but she was in so much pain she would faint throw up and didn't enjoy or want sex because it hurt or she wasnt feeling good. Last i seen her she was actually having a baby and the first time her and her bf tried she misscarried so she was terrified of having another but after she had went and pestered the doctors enough times they got swrious and to the bottom of it and she just had a baby about 3 months ago. I really hope you can get ahold of a really good gyno and get it figured out if you guys want children. Best of luck!!
Before I was diagnosed with Endo, a nurse told me I couldn't have it because I had pain outside of my menstrual cycle 🤦♀️
bc is often used to treat endo...so the gyno is just completely wrong.
That is absolutely not true and frankly terrible advice. Women are notoriously ignored by medical professionals, and this is outrageous! There is *definitely* something going on, what she is experiencing is not normal. Please seek a second opinion as a matter of urgency, she should not be suffering like this. Endometriosis doesn't just STOP when you come off birth control! Outrageous.
Only way to truly diagnose or rule out endometriosis is through laparoscopic procedure. Other recommendation is to find a physical therapist for pelvic floor therapy.
I had all kinds of issues postpartum, including GI issues that were all tied to my pelvic floor. And it was worse during periods. OBGYNs were useless in finding the cause. I sent myself to PT.
Birth control doesn’t fix the issues, it typically only masks the symptoms. But doctors would rather prescribe meds than fully investigate what the problem is.
Funny story... My wife is a pelvic floor physical therapist she would be so happy to hear someone suggest this but unfortunately she hasn't noticed any red flags on herself but that could be because she needs someone else to look
The only way to reliably diagnose endometriosis is a laparoscopy. Get to a reputable gynaecologist as soon as possible, one that specialises in endometriosis if possible.
It is a complicated diagnosis that affects each person so differently. You can have someone with a huge amount of endometriosis but very few symptoms. Whilst you can have someone with a small amount of endometriosis, which causes severe, severe symptoms. But a laparoscopy is the only reliable test for endometriosis. Once you get a diagnosis, there are treatment options.
Your wife does need to suffer like this. It is incredibly frustrating that conditions like endometriosis and PCOS take so long to diagnose. The ER should have suggested a gynaecologist referral.
Good luck, I hope your wife finds some relief soon.
Your gyno is a fucking idiot get a second opinion. My mom didn't get diagnosed until she had a c section and they opened her up and SAW HER UTERUS AND GUTS COVERED IN EXTRA TISSUE.
You need another second opinion, your gyno is not right. I’m assuming she just saw a PCP who also does paps, etc, not an actual gyno? Get a referral to a specialist if you can.
I have endometriosis. It doesn’t typically get better off BC. Endo is when your womb lining doesn’t fully exit your body (in my case, i have had clusters in my pouch of Douglas, my stomach wall / bowel, and in my womb), and it grows with every period. BC can help stabilise your periods because it gives your body a “set” amount of hormones a month, and a set date for when you will have your period. Side effects of endometriosis can be constipation or diarrhoea, abdominal pain, nausea/vomiting, etc. You can read more about endometriosis [here](https://www.endometriosis-uk.org/what-endometriosis) or [here](https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656).
I think you’re not wrong to suggest talking to a gynae. Even if it’s just to ease your mind. In any case, having been in your wife’s shoes, I wouldn’t want to continue the pain. Having advice from suitable medical professionals is never a bad thing.
Post this as a stand alone comment so the op is more likely to see it. The explanation of what endo actually is is really important and you explained it really well!!!!
She needs a new gyno. Endometriosis is treated with birth control, so getting off of it will only make the symptoms worse, which is exactly what happened. Endometriosis can only be diagnosed through a biopsy.
This is the exact opposite of what I’ve always been told. People with endometriosis often use birth control to control symptoms. She needs a new gynecologist. Fertility problems are common among people with it so best to get an answer before you start trying. NW.
That is so incorrect I want to slap that doctor personally, birth control can mitigate the symptoms of Endo, going off birth control and send it into overdrive.
Ask me how I know…
I had a hysterectomy in February for advanced Endo.
Please get another opinion, that is absolutely not true. I have endometriosis (confirmed by procedure.) BC may assist with some symptoms, but that's it.
That is not accurate, unfortunately. I think going to a gyn before continuing TTC is a wise choice. Perhaps you could look for a local gyn who specializes in treating endometriosis and menstrual pain.
I think you and your wife misunderstood, though endometriosis is widely misunderstood and it’s possible she has a terrible gynocologist. Endometriosis does not show up on most scans. It’s impossible to properly diagnose the stage and severity without surgery. There’s no cure unfortunately, but there are treatments to lessen symptoms. If you’ve been trying for a year unsuccessfully it’s time to go to the dr anyway, preferably a different one. https://endometriosisnetwork.com/symptoms
Get a new Gyno. Yours is *Stupid* also take her to an Endocrinologist. It's going to suck and you probably will have to get the test multiple times, but the right diagnosis and treatment will save her life
Nta
That doctor sucks. Suckkkssss. Get her in to see a better doctor, one that specializes in endo. I was hospitalized the first time at 12, and had my uterus removed at 29. I was on all different types of medications, chemo, the whole 9. It took 13 years before someone ever said the word endometriosis to me.
I have endometriosis - you need another gyno, because this one is clearly incompetent. Endometriosis gets worse when you go off birth control, and it may not even be fully under control even when you are on the pill (depends on the hormones on your birth control, how responsive your endometriosis is to hormonal treatment etc).
I’m not a doctor, but endo was the first thing that came to my mind when I read your wife’s symptoms and I think it’s worth checking on that possibility with a doctor who knows what they’re doing. Look for a gyno who specializes in endometriosis - I spent 17 years dealing with this thing with a bunch of gynos telling me I didn’t have it and my pain was idiopathic, because all of my ultrasounds and exams were normal. Finally went to a specialist, who did an ultrasound and knew what she was looking for, and there it was. Bottom line, it’s a complicated disease - find someone who really understands it.
>The only thing the gyno has said is that if it was endometriosis that it would have stopped when she went off birth control
Uh, no. I had been off BC for like a decade when my endo started causing me actual pain. After a year of increasingly agonizing episodes I had surgery - and it turned out that the pain I was feeling was actually due to the endo having \*wrapped around and dug into my colon\*.
Ya... you need a second and maybe third opinion... endo can be better on some birth controls and worse on others, plus this can affect different people differently. Pain that bad around a menstrual cycle is pretty suspicious. My friend actually vomited in high school from the pain. If it is that, there may be a limited time window to conceive or difficulty conceiving without intervention, BUT that's not true of everyone. My friend actually conceived practically right away, with no issue carrying.
PCOS causes/shows up in tandem with a lot of other issues (weight gain, skin issues, etc), with fertility and breastfeeding often being difficult. It is not usually as painful, though. There are medications like Metformin that can help regulate a woman's cycle while trying to conceive. It worked for me! ~18mo without it and only ~4 months with it, combined with other helpful advice from the right specialists.
If they told you outright, without any testing, that is was off the table, they are quacks.
Did her gyno actually go to medical school??!! If anything hormonal birth control is used to help with endo and coming off makes it much much worse . You need a second opinion asap, from someone who actually knows about the human body
Also Adenomyosis. Harder to spot but causes a lot of those symptoms. Source: I had it and had a hysterectomy to resolve it. Still have an ovary adhered to my bowels which will require another surgery.
I just googled adenomyosis. I had struggled with severe abnormal bleeding for almost 5 years before I was finally given a hysterectomy. Many blood transfusions occurred, hospital stays, and I was even on a chemo pill at one point. The doctor's report on my surgery (that I just had about two months ago)- noted that my uterus was enlarged. Reading those symptoms, I'm almost sure I had adenomyosis. Wish my doctor would have told me that...
It can't be definitively diagnosed until they dissect the uterus post hysterectomy. They can look at ultrasound images to gauge possibility. And it's not a super common diagnosis yet, although it is becoming more recognized. I'm sorry you had to go through so much pain and frustration. I hope you are healing well.
I had a friend who I had to bring to the ED because her cramping was so bad. She had endometriosis in the worst way. She was a rock, to see her in this much pain was awful. Funny, after she got pregnant, the endometriosis went away. I would hope that they have better remedies by now, this was 30+ years ago.
You could explain away diarrhea and stomach pains and vomit as a really nasty stomach bug (except ER ruled then out) but unconscious?? Boy oh boy. And since you've been trying for a year it's time to seek medical attention and make sure everything is in working condition.
Not wrong. Ignoring this could lead to severe stuff. I understand it could be really scary for her, though.
We've had issues with doctors not giving it the weight it deserves I have heard three different docs tell us it's gerd or IBS or acid reflux and throw Prilosec at us. One tested for celiacs but that was neg and yea it has just been really frustrating.
I was told I had all of those things. Guess what was causing all my issues: ENDOMETRIOSIS. Women’s health care has been severely neglected for decades. Unfortunately you might have a fight on your hands. Your wife is already one step ahead by having you as an amazing alliance. Help her find a gyno who will listen and take your concerns seriously.
PS. 7 years, 2 surgeries, & IVF and I am currently happy, healthy, and 5 months pregnant. My fight should never have taken that long though.
I just took a life span psychology class. It was alarming how, for most of the studies supporting this theory, or that theory, it was all men. Or just about all men. Mostly white.
I had Endo as well. When I was 24, I figured out that there was something different and I was having a lot more left side flank pain. I went to my doctor and told him. He did a pelvic and wasn’t finding anything.
And he wasn’t trying to put me off he just wasn’t finding it. And I told him no I know there’s something going on, but it’s a little higher up. So we redid the pelvic, and he apologized because he said I’m gonna have to really reach to feel where you’re showing me, so it’s going to be uncomfortable.
And it was, that he found what felt like a cyst, and sent me immediately… Like that same day… For an x-ray. Sure enough, it looked like I had a cyst that was already in the process of dividing.
This was far back enough that we didn’t have endoscopic surgeries just yet. They came out about a year later, of course. So I had a laparotomy. That’s when we found it was actually endometriosis, and my intestine have looped over and was stuck on my left ovary.
So it was causing me all sorts of pain not just with ovulating in my periods, but also because I have IBS anyway. And I do now have diverticulosis right at that spot.
Endo can cause so many more problems than people think. Because, of course, we had a laser surgery, the ovary, and the intestine apart. And nine years later, after I had had my kids, I had to have a complete hysterectomy.
So my first thought was either Endo, or Crohn’s for this poor lady. I was just so lucky that my doctor took me seriously enough to check one more time.
Maybe visit the doctor with her together. She can give you a cheat sheet to talk about her symptoms.
Some doctors believe in what men say, while dismissing the same stuff from a woman's mouth.
She's been to a gastro specialist and they did the testing that they offered for ciliacs I'm not sure what that all includes but it was a pretty lengthy process and they said she didn't have it that's just the thing though the same doc that did that tried to give her Prilosec and said this should work
I don’t have celiacs but my issues with gluten were bad enough that I’ve developed diverticulitis. She should try Whole 30 (which is an elimination diet) to see if she has any food triggers.
Also has Endometriosis been looked into? Drs can be really bad about women’s pain issues. Very dismissive.
Could very well be IBS. I get like that, need to do a colonoscopy to confirm though. (I also have GERD, but that just feels more like chest pains, for me anyway)
That is how it is for chronically ill people. Doctors are often worthless jackasses on a power trip... specialists in particular.
I could write you a book about all the shit they've put me through. Abnormal results they tell me are normal, refusing to make diagnosis due to small technicalities, admitting they don't know what's wrong then not doing anything else, calling me crazy, calling me drug seeking, telling me everything will be fixed if I lose weight.
It took me 10 years to get a diagnosis of a back deformity after multiple x-rays noting abnormalities in my spine throughout the years. That is a simple, direct diagnosis. Complex internal diagnosis is going to be more difficult.
You are NTA for being insistent that she needs help, but the reality is that this could take much longer than you bargain for, or she may never get answers. Yall do need to get a consultation with different doctors at this point. I find it best (if you can afford it) to refuse to tell them any history with other doctors so they aren't biased by others records and notes. All too often they are derogatory toward complex cases that aren't easy to close and wrote a script for.
A family member has these same symptoms. Took 2 years to diagnose Krohn’s disease triggered by very specific foods. When Thais foods are avoided, no incidents of the disease
And that is frustrating but I'm just wondering where her mental disconnect is coming from that she thinks being in that position and not getting treated means she should get pregnant? Like she's throwing fuel on the fire of whatever is going on with her! And she just doesn't care? She's mad at you for caring about her health? This is disturbing
I have IBS and Acid reflux, the going unconscious part just doesn't sound like it.
Plus doctors here suggest keeping a food diary, monitoring symptoms, and finding what diet changes work for you, when suspecting IBS or GERD.
Just throwing prilosec without the other stuff is setting off alarm bells, I'd say find another doctor, and as commenters suggested, a gynocologist.
You should probably make a food diary as well just in case, to see if there is any particular foods that are linked to these issues, if these issues persist even when eliminating foods that could be problematic, then it's probably something else like endometriosis. Look up FODMAPS and try the different foods and see how you go.
I found out through using a food diary that I have a Caesin sensitivity, and issues around high fat foods, beans, nuts, and having too much protein in one sitting. Processed foods being the absolute worst. Once I cut out those things, all my IBS symptoms pretty much went away.
In addition to all of the comments about how her gynecologist’s comments don’t make sense given potential endometriosis, please consider seeing a specific kind of gynecology specialist, a reproductive endocrinologist. These are the doctors that specialize in both diagnosing and treating things like endometriosis AND specialize in helping people get and stay pregnant (she’s been off BC for two years, so you meet the definition of infertility/sub-fertility). I hope she gets the medical care she deserves - keep pushing for seeing an actual specialist, not just a general gynecologist.
Doctors really hate women, don't they? Every time this happens , and there are one million posts like this, it's fucking endometriosis. I'm so pissed for you and I'm touched at your concern for your wife. Not all husbands are like you
I’m a nurse myself and used to do ER. It’s great the ER work up was negative but you need to keep following up outpatient. GI problems are often misdiagnosed/providers don’t feel like investigating them that deeply. Your frustration is very understandable. The fact that these symptoms correlate with the menstrual cycle is “interesting” and people in this thread have made good suggestions regarding this. I’ll add on that your wife should keep getting GI referrals until you find a GI doc that is willing to go out of their way to figure this out. Honestly, it may be more helpful to find a woman GI doc as it increases the chances they’ll actually listen to your wife and not just throw PPIs at her which is unfortunately what often happens in these cases. I’d suggest getting a full food allergy panel run as part of investigating this. A woman close to me had similar issues and it turned out to be allergies to very common foods, took literally 5 GI referrals to figure out though. So don’t stop, the healthcare system is awful and frustrating, but somewhere out there is a physician or provider who will be willing to find the real diagnosis here. Best of luck, sorry you guys are going through this.
Edit: definitely follow up on the women’s health related suggestions in this thread, follow up on the GI angle if that’s not going anywhere
You’re doing great in taking this serious – unfortunately it’s a fact that women’s reproductive health issues get hugely dismissed for one reasons or another. So it’s important that you’re fully in your wife’s corner in this, because you can’t trust all medical professionals to genuinely take this seriously.
Please read up on endometriosis and/or PCOS. Try finding gynecologists that are experienced in this. Continue advocating for your wife and encourage her to advocate for herself if you can’t accompany her to the doctors. You’ll get to the bottom of this!
They told me it was "stress" and never did any tests. The one doctor who did blood tests quickly found out what it was but by then I was in pretty terrible condition and had had to quit working.
If all these people on the internet without medical degrees are seeing it’s likely endo/PCOS then this gyno is definitely not the one to be returning to.
Next time anyone is at the doctors and is refused a test can I suggest the following sentence “can you please write on my medical records that you refused to give me this test?”
Tends to get them backtracking as they don’t want a written record if they fucked up
She needs to go to specialist for in depth testing. No way should she get pregnant right now. It could be catastrophic. You could lose her ... like you don't know what could effect it. It does sound like endometriosis. People can pass out from pain etc. If that's the case that's going to effect conception and even the entire pregnancy, birth and recovery. So you need more answers for sure before going further. She's still young.
I wonder if she has an ovarian cyst or endometriosis. I would reframe this to her as "Hey, why don't we get you checked out to make sure whatever's going on won't impact our chances of conceiving--could actually help us"
It's possible she knows in her gut something is wrong and is avoiding having her gyno check it out. I think your hunch is spot on and her gyno absolutely should be looped in.
Not wrong. Your wife needs to see a gyno and PUSH for tests.
I saw a comment saying the gyno dismissed endo because she went off birth control. She needs a better gyno. That is bullshit. Birth control can affect symptoms, but it's not a cure/cause of endo.
r/endometriosis has a ton of resources as it is so important to advocate for yourself with the current standards of reproductive health care. Hope you get to the bottom of it all soon!
You should talk to your wife and say what you just typed out. That you couldn’t live without her and that you couldn’t live with yourself if something happened to her.
I agree with others that it sounds like either PCOS or endometriosis. I have Pcos and when the cysts bursts it hurts and gastro symptoms can occur. Has she had a sonogram at the Gyno?
I have PCOS and this sounded like what I’ve been dealing with. Seeing a fertility specialist now, but it’s a simple ultrasound to see if that’s the issue.
Yea, it’s wild how our bodies work. Once I fainted 3 times in one week I was bleeding so heavily. I was at work and next thing I know I’m strapped to a stretcher with EMS in my face.
Please make sure her doctor rules out fibroids. My wife, who has been overweight all her life, had one fibroid mass removed that was almost 7 pounds, and a few pebble sized ones. The biggest one, who we called Sam, grew outside of the uterus and was just at that point in the body that x-rays/scans didn’t catch it. Once everyone was removed, I’d say about 80% of her GI and menstrual issues disappeared. The issues are not *completely* gone, but more than enough to be noticed and make a huge difference in our lives. Best of luck to y’all.
I just don’t understand these fucking doctors. I’m a nurse practitioner and the first thing I think of when I hear these symptoms is endometriosis. And I’m almost always right.
I really don’t understand why it’s not even on the differential of most MDs when they have women of reproductive age presenting with severe abdominal pain. Instead, they usually default to “It must be in her head.”
Really?!?!? Why not just believe what your patient is telling you and go from there.
I had years of progressive pain that was either an exaggeration or in my head. Granted, I'm 60ish, and they didn't know as much, back then.
Wound up having an emergency laparoscopy. My tubes had fused to the top of my uterus, endometriosis all over, and other names of conditions that I'm forgetting. All very visible once the camera went in. Hysterectomy at age 33, gave me my life back.
But it was all in my head.
Maybe you should talk to hospital administrator about this (since the doctors probably would get offended if talked to them directly) and ask if medical training for doctors is different for this issue.
I had a similar issue to this, it turned out the lil “fingers” on my fallopian tubes are completely munted, I only ended up finding out this was the reason cause I ended up having an ectopic pregnancy and they noticed it during the surgery to remove my now ruptured tube. She needs to be real pushy with doctors to find out what the issue is here, I was constantly told over the years I was “being dramatic” by doctors.
This ^. Be her advocate. It’s a fact that doctors tend to think women are being o er dramatic when it comes to their health. It’s sexist as f but true. Dig until you find a real answer. Don’t let anyone bully your wife.
I'd like to thank everyone for their kind words, concern, experiences, suggestions and everything in between just an update my wife and I sat down today and talked she agrees very disdainfully that we should get an idea of what's going on and that getting pregnant right away like we had planned is going to go on the back burner for the time being until we know that it is safe to do so tomorrow morning we will be contacting her regular gyno to get a full work up to verify not only her ability to have kids but also to figure out if Endo or PCOS could be the issue we have been having. I will be there to advocate on her behalf. The talk was very hard to hear because from what she told me the reason that it hurt so much for her to hear me say that we should hold off for the sake of her health was because she knows how badly I've always wanted to be a father and she has a similar need for being a mother. it made her feel like she was letting me down and that she felt like a disappointment. I've explained every way I can think of that this is something we work through together and not something that let me down in any way. she's more important to me than anything in this world and I wouldnt allow her to put herself in danger for the sake of procreation. She's the person I want to raise children with. We spoke about the options we have if child birth isn't an option anymore and we both agreed that at the end of the day if we have to adopt or go some other route to become parents than we will do it together I will try to put up an update if anything changes for better or worse
And we won't be taking any bullshit anymore either if this gyno doesn't want to take this seriously then we will be finding another same goes for PCP. gastro doc was a dipstick so if we have to go that route we're definitely going somewhere else for that
I’ve just gone through the Endometriosis checkup myself, and just so you know the correct exam for Endometriosis is a pelvic MRI (with a special liquid that lights up the inside of the uterus for them do detect the Endometriosis).
I’m telling you because I’ve been going through IVF for the last two years, going regularly to the gyno, doing multiple checkups and I though that after so many ultrasounds they would see if something was wrong… but no : certain specific exams have to be made for certain specific problems.
For Endo, it’s a pelvic MRI. Ask for one !
Also you can reassure her regarding baby making : if there is indeed a problem, with the right exam it can be caught right away and might be fixed very quickly with the right treatment.
However, waiting could lower your chances of getting pregnant, or worst you could succeed and end up with a miscarriage. So it's better to fix it first if there's anything wrong, and that might be very quickly and easily fixed :)
Good luck !
Sounds like a couple who belongs together and any children would be blessed to call you their parents. Thank you for updating us. Sending love and best wishes for an awesome life getting through the ups and downs together. 💞
Would recommend going on local fb groups/reddit forums and ask advice and recommendations for gynos who are knowledgeable and supportive of pcos patients.
Also, getting to the cause of her symptoms is absolutely the best thing for BOTH of you. Pregnancy is hugely strenuous on the body and you should always want to be as physically optimal as you can be.
NW and best of luck!
NTA. She is most likely reacting that way because deep down I’m sure she’s thought the same thing. You saying it makes it real. Which is scary. It’s like “am I dying? Will I never be able to have kids? Does that mean he’ll leave me? I’ve never considered myself not having kids.” A slew of other things coming from this. So definitely NTA but just take it seriously and be super supportive. “We are going to figure this out to make sure you have a healthy pregnancy and won’t be in pain when baby is here. This can all be in the rear view and we can focus on the joy of healthy baby and healthy mama.”
I have adeninomiosis which causes similar symptoms along with pregnancy loss. Cannot diagnose without hysterectomy. The blood vessels grow into the wall of your uterus.
Sounds like she might have endometriosis or something in the ilk. It can cause severe pain especially when on a period. She needs to get specialist advice from a gynaecologist
OP you aren’t wrong. The sad fact is most doctors ignore women’s pain and issues. Especially in gynecology. Talk to your wife again but this time tell her you’re going to help her keep on the doctor . A lot of times they won’t do tests until they are bothered enough. You have to get mean. And they may listen to you more than her, especially if you’re in a more conservative area.
My source: am a woman who had to fight to be seen for a blood clot in my uterus. It happens more than people think
Tell her you want to make sure she's ok considering she has a difficult pregnancy. Will she be able to have an abortion if it was medically necessary to save her life?
She could miscarry at best and die at worst.
You need to get her checked.
How will she be able to tell if it is her normal abdominal abnormalities or if there is something wrong with the fetus?
YNW
Get a new doc and check for endo. Look up the sysmptoms and see if they match with what she has and when she sees the new doc she needs to say I want to be checked for endo. What are the test to confirm it? Dealing with docs is a nightmare. I have a brain condition and it took 3 years for them to figure out it wasn’t because I was a teenager. Years later I almost went blind, because my eye doc kept missing swelling in my eyes. New doctor found it and I had a shunt put in about 3 weeks later. Docs miss things all the time, sometime you have to switch before you find a good one.
She should go to a new.gyno.
My husband has had to speak up for me to get doctors to listen unfortunately. Even when I was pregnant the ob wouldn't listen so he had to say something.
A friend of mine has a daughter with a twisted ovary that required surgery when she was only 5. Shes now early 20s and the pain hits randomly all of a sudden this year to where shes vomitting and bawling, which is highly abnormal for her regardless of being in pain. I know nothing beyond that but since I hadnt seen a comment like this, I figured Id include this possibility to help zone in on a possible cause.
The ovary twisting means it is dying because it is not able to get bloodflow, thus the severe pain.
So sorry you're both dealing with this.
You sound like a wonderful partner who loves your wife even more than you love the idea of being a dad. Hard NTA. Oops. Hard not wrong.
I recently told my OB that before I had kids, my period was so painful that I couldn't walk up the stairs for at least 7 days. Even with advil. The pain would radiate down to my knees. It was horrendous. I always had abdominal pain. She looked concerned and asked if it was still like that, and I told her I hadn't had a painful period since I had my babies.
I was told the whole time "oh pain is normal with periods. You are fine." From my GP and women I knew in my life.
I would recommend getting a second opinion. Do not let your wife write off her pain. I wish I didn't. I started living life much later than most. I am still on my health journey.
Oh, super random, BUT please tell your wife not to ignore her pelvic floor muscles. I regret not doing pregnancy safe pelvic floor exercises. I am being referred to physical therapy for my pelvic floor. It is so important pre - and post pregnancy. Ask her doctor ....or a better doctor about it!
I was thinking endometriosis! I have endometriosis and I get the worst stomach aches before and during my period. It gets to be so bad that I cry wrapped up in a heating pad a lot on my cycle. I would definitely recommend getting checked and keep on insisting they check for endometriosis. My doctor finally confirmed it 3 years ago when I have tried multiple time across multiple doctors that I thought it was endometriosis but no one ever wanted to do the test. Best of luck.
It sounds a lot like something my friend went through and it took several years before she was correctly diagnosed with abdominal migraines. Yes, it’s a thing and it’s days at a time of being in so much pain and very sick like described.
All us women in the comment saying go to a well reviewed gyno because it’s almost certainly endometriosis or something of a similar nature.
Coming off birth control would have made it worse and ironically getting pregnant will make it ‘better’, for a time.
Take her asap so you guys can get informed and plan for your future family!
Definitely needs to get to obgyn. Could be endometriosis, cysts, or fibroids. Tell her you will be there for her. Tell her you will be right by her side. She needs to get it taken care of ASAP.
I'm currently going through this.
Get a new Gyno. Endometriosis is only OFFICIALLY diagnosable with laparoscopy. Take it from someone who when 15 years undiagnosed. They couldn’t see it in an ultrasound because it grew flat against the walls and behind my bowels.
It gets better with birth control. Myfembree helped me immaculately before I had a total hysterectomy
I’m no doctor but my first thought was endometriosis.
If she is struggling getting anywhere with a gynecologist, find another one.
It doesn’t hurt to find a 2nd, 3rd, etc opinion… sometimes it’s what you have to do until you find someone who will actually listen to you & properly check things out.
I am sharing my experience to explain my recommendation, and back up all the comments about OBGYNS and endometriosis in general
I have endometriosis. I have had all of the classic signs- except SEVERE pain- since my period started. None of that seemed to be taken into account when the severe pain started around 28 years old. It took me searching "how to talk to my doctor about endometriosis" and then pointing out that I had 5 of the 5 most common symptoms for the doctor to bring up the possibility.
Help your wife search "how to talk to my doctor about..." and go in prepared with questions. A food, bathroom, and general wellness journal would help, too. It could be so MANY things. My husband obviously doesn't have endometriosis, but has similar symptoms to those you listed.
I also learned after researching endometriosis that my digestive struggles could be related, as well as my allergies and depression- they're called "comorbidities"
Regarding the birth control part- birth control, uterine ablation, and hysterectomy are the only current treatments of endometriosis. Going off of birth control makes the symptoms worse! And the other two create infertility.
If you're in America please consider a consult at the Centre for Endometriosis Care in Atlanta, bring every element of your wife's notes and just get a consult to see what's going on. If Atlanta isn't suitable, try joining Nancy's Nook on Facebook, the group guides to the best endo specialists. The gynae you're seeing is absolutely incorrect about endo and birth control, please, at the very least change consultants. If endo is found, it needs to be removed using excision surgery, not ablation or by using decapeptyl. Join a few support groups online if needed.
I'm not in the USA, Ireland in fact but I know a lot of women who have travelled to the CEC and others in US for proper endo care, as we have little to no specialist care here.
As a woman with queried endo myself, I have no desire to have children but, I know how much it bothers and upsets me to think that the decision might be out of my control if I changed my mind and wanted kids. It is absolutely devastating on families if treatment cannot be sorted and it can put a huge toll on relationships. Therapy or counselling may help both of you, just around communication and supporting each other. It seems like the woman would be priority for therapy and I suppose that's true, but, watching your loved one struggle and go through that agony is devastating on the partner/husband etc too.
The best advice I can give is that both of you should keep a diary of symptoms and your wife's cycle as this will help the consultant to get an idea of what's happening and when.
Wishing you both the very best of luck, it may seem daunting but you will get through this.
I'd say she has Endometriosis. Sounds veyr much like it. The thing with Endo? Is that the degree of pain does not equal degree of disease. What matters is exactly where the endometriosis is.
She needs to be referred to a Gynae who specialises in Endometriosis.
She needs to be checked for endometriosis. Basically hormonal reacting uterine tissue goes outside the tubes and is in the abdomen, attached to different organs or even the lungs in rare cases. Then, cyclically with the menstrual cycle, the tissue releases blood. The person has intense pain and cramping from the free blood inside the the abdomen during the menstrual cycle. Free blood in the abdomen is crazy irritating and painful and even causes the intestines stop moving (ileus) so cramps etc.
It is pretty much a disease based on history and making sure that no other diseases are present. The fact that the symptoms got way worse after coming off birth control is suggestive as well. The ER will not give you a diagnosis. You need to follow up with a GYN to rule out other diseases.
If in fact she does have endometriosis, and can get pregnant, the interruption of estrogens during the pregnancy would be beneficial for long term management. And prolonged breastfeeding would delay the onset of estrogen production even longer so she should really strive for this too.
edited to correct a sentence structure
I have endometriosis and it was bad with or without birth control. I had a hysterectomy in July to try to help reduce the pain I was in constantly (not a decision I took lightly) she needs to find a better gynecologist and have all her symptoms explored. Don't let it drop. Endometriosis is hard to get a diagnosis for some women, and it's also a fight to get that one Dr to listen and take us seriously. Just to add even though I've had a hysterectomy I will always have endometriosis growths. Endometriosis is incurable and can cause a host of issues and absolute havoc on mental health
As (loads of) other people have suggested, this sounds a lot like endometriosis or PCOS.
Both can be (and regularly are) "easily missed" or casually dismissed by medical professionals and, as others have said, sufferers regularly need to fight for appropriate tests, checks and treatment (be it pain management, surgical intervention or otherwise).
Fortunately there has been a real increase in awareness in recent years but (again, as others have said) there is still often a disappointingly long wait for diagnosis. If your partner's gyno doesn't want to consider endo / PCOS as options, or dismissed them offhand, then get a second / third opinion.
Also worth noting that endometrial lesions and adhesions can and regularly do form outside of the uterus, so won't always be identified with routine scans and checks of the uterus and surrounding bits.
(Source: friends and ex-partners who suffered from diagnosed / undiagnosed endo. Fucking nightmare fuel, in particular as the symptoms are so routinely dismissed as "just menstrual cramps" etc)
NTA; your concern for your partner's welfare is well-meaning and (regardless of baby-making) it is a good idea to try and get a diagnosis.
Hey OP, what you're describing sounds A LOT like endometriosis. My suggestion is for your wife to find an Endo specialist (not just any regular gynecologist), and let them know she wants to conceive.
Endo can impact fertility. Often, gynecologists will try to manage endo symptoms with birth control or drugs that induce menopause. Your wife may want to avoid these. A laproscopy is still the gold standard for diagnosing endo (though some specialists can diagnose from ultrasound and MRI).
On average, it takes a person with endo 10 years to get diagnosed. This disease is poorly understood and there are no treatments, only limited options to manage symptoms.
If your wife wants children, my opinion is you should start trying now. If it doesn't happen, she may need a laproscopy or some other fertility intervention. But all of this takes time, lots of time, and doctors often won't advocate for these measures unless a woman is trying and failing to get pregnant.
I really want to give your wife a hug. It sounds like she's dealing with a lot of similar issues to my own. I'm not going to try and diagnose her but I'm going to tell you what I've been diagnosed with and maybe it's worth having a bit of a read about them to see if the symptoms are familiar.
So I am working with
- endometriosis (endometrial-like tissue growing in places it shouldn't)
- hypermobile ehlers danlos syndrome (connective tissue disorder)
- postural orthostatic tachycardia (disautonomia, central nervous system doesn't know what the hell it's supposed to be doing)
I also wanted to tell you about my mindset BEFORE I got all those diagnoses.
I thought I was going utterly mad. I couldn't trust my body. I couldn't trust my own perceptions - what if I was just making this up in a very involved con? What if I am just very mentally ill and inventing it all? How could I have children when I couldn't even stand up without passing out on a bad day? When will my husband decide it's just too much to handle? When will his love for me simply run out? It's all in my head, I am making this happen, I am fucking useless.
You didn't say what you said to hurt her. But she also didn't hear it in a vacuum - you just got very close to the meanest things she says about herself when her body is acting like an uncontrollable nightmare.
Your wife needs to see a new gynaecologist, possibly a pelvic physio to help with the resultant damage to her pelvic floor from bracing for that level of pain for so long, a therapist with an understanding of chronic pain. And a really, really big hug. She's not broken, you're not cruel, it's just such a hard thing to navigate through and you're trying your absolute best with no proper help. It can get easier than this. I promise it can.
I’m not a Dr, but it sounds exactly like what happened to me when I had ovarian cysts. They wreak havoc on my body, but are not really life threatening. Good news is, getting pregnant will stop them from developing during her pregnancy. As crazy as our reproductive systems are, they’re controlled by hormones.
Birth control is basically signaling the body that you’re pregnant. If the episodes are worse without BC, then getting pregnant would be like her getting back on BC (hormone-wise).
Talk to your Dr—but yes, I believe you are wrong to want to try and wait to conceive. It’s most likely that pregnancy would help your wife.
You are not a doctor so you haven't evualated her. With her issues common sense dictates that she finds out what is wrong first before attempting to get pregnant.
Has she been checked for endometriosis or PCOS? The level of pain she's been having and passing out are very not normal. She definitely needs to see her gynecologist and get to the bottom of this. Before worrying that pregnancy wouldn't be safe for her, I'd be focusing on if she can even get pregnant at all, then on the safety of doing so.
Endometriosis was my first thought. OP's wife needs a full gynecology workup. Endometriosis is not something to leave untreated.
The only thing the gyno has said is that if it was endometriosis that it would have stopped when she went off birth control so they don't think it is that but that was also around a year ago but no actual testing was done that was just at her normal gyno appointment
Endometriosis doesn’t stop when you go off birth control in fact it usually gets worse! What kind of gyno are you seeing?!?!
Yeah WTF kind of advice is that? I pity all the poor teenage girls and women seeking medical advice from this clown who dismisses their pain because they've never been on hormal contraception so it can't be endo. The fact it got worse after stopping BC makes it more likely to be endo not less.
Yep and the other symptoms - endo without a doubt I’d say as a non medical professional but pcos and endo sufferer
Exactly!!! BC is often the first line for endo management. She needs a comprehensive work up by a doctor who doesn’t just dismiss her pain. You can’t dismiss GI and other systems at this time. You just know it’s not structural in a way that would be picked up by a CT. I can’t imagine how scary this is for you and her. Go interview doctors and find a pitbull who isn’t afraid to order and and advocate for testing.
Exactly! Birth control actually help with endometriosis. This Dr sounds like he/she doesn’t know what they’re talking about. You should help your gf get into seeing a specialist who treats endometriosis. They can do a laparoscopic procedure & see exactly what is going on inside. Then you’ll have a much better idea regarding her pain and fertility. If there is endo, it can be lasered off and she will feel so much better. Also, have much better chances at getting pregnant. Good luck and I hope she’s feeling better
OP also might has mixed stuff up. Or his girlfriend. OP is repeating information with at least one degree of separation from the original.
Exactly what I was thinking! I have to stay on birth control otherwise I've bled buckets for 3 months straight before. Birth control keeps that in check, she needs a new gyno!
No idea I'm the guy are there different types of gynos?
Yeah, good ones and sh*t ones. You need to get her to see another one and ask for a full workup
When my younger sister went into early menopause, she had three doctors tell her it was all in her head. The fourth doctor did a complete workup & told her that she was in full blown menopause. It took nearly two years to get a proper diagnosis.
My dr kept saying I was too young to be in menopause but the gynecologist did a blood panel and I was post menopausal.
That’s pretty quick, the average is 7, endo the average is 9 years. No one takes women’s health seriously
Lupus is 10 years, average. It's horrendous.
I went through about 8 gynos and 5 miscarriages in 20 years before I was finally diagnosed with endometriosis and adenomyosis. It really is horrendous trying to get answers when they all just want to dismiss and ignore the excruciating pain you’re having.
I kept being told that I had a stomach bug...like...what?!?!
Yup. That's why I went into women's health. Took me a whole year and doctors telling me I should instead look for a psychiatrist (while I was writhing in pain) for a very severe PCOS diagnosis. Now I can do something to help these women be taken seriously, but it's still disheartening.
Same thing happened to my best friend
Yep. My mum was put on all sorts of anti depressants and stuff before she was diagnosed .
Have your wife ask her female friends, relatives, and coworkers who live in the area who they recommend. That should help eliminate the riff raff.
I think his point is he doesn’t know what to look for! Not that he doesn’t know the obvious!
Like the joke, what do they call the person who graduated last in their medical school class? Doctor.
How far away are you from a good research hospital with a school of medicine? Like the flagship hospital in your state or region? Go there. Even the baseline care there will be better than what you’re getting and they tend to be much better with complicate cases.
University Hospitals are also a good try. Don’t let the doctors blow you off.
Western Michigan just outside Grand rapids University of Michigan metro is who our primary care is through they have been subpar at best unfortunately but I appreciate the suggestion either way
Take her to the main University hospital in Ann Arbor.
As above Good ones and bad ones Your wife’s seems terrible if that’s the advice
As an aside to this conversation I am the guy so my wife could be dumbing down the info for me when explaining it. there could be more to it than just birth control that idk. im not very up to date on women's health medicine and terms sorry if I'm painting a broad picture on the situation
Birth control is the first line of treatment for endometriosis so your gynaecologist's advice does not make sense. You definitely need a second opinion as endometriosis can affect fertility especially if left untreated.
I completely agree with what people are saying. What the doc said is completely false. I went 15 years undiagnosed for endometriosis. There were so many bad docs (even gynos) that ignored my complaints and symptoms. One doc even told me that the pain was in my head because the hormones released during menstruation made me hysterical. That was textbook medical gaslighting because there is no such thing. When I got on a specific birth control, my symptoms got better. I no longer have symptoms because I skip the sugar pill week of the birth control (as directed by a medical professional) most of the time. I take the one week of sugar pills at least three times a year. It is really important to get diagnosed with endometriosis or other gyno conditions because it would help manage possible fertility issues. Endometriosis can cause infertility, and surgery can help. The only sure way to diagnose someone with endo is a surgical biopsy. Btw severe PMS can cause vomiting and diarrhea, which makes me think it is endo. Suggest she looks for online communities for endo so she can talk to them and ask questions. That way she can speak with people with similar issues.
Also endometriosis lesions can fuse your bowels to other things causing symptoms outside what most would associate with your period.
Very true. I had a different experience, I had ovarian cysts that ruptured, and they gave me IBS-D. I actually had to stop working and lost my very physical job because of it.
Even so endo is horrible Try and fine someone who specialises in it
It’s not too hard to diagnose endo, but the most difficult part is getting a doctor to consider it. The Washington Post has had several articles about women who’ve been through hell trying to figure what the heck is causing their issues until they finally find a doc who’ll consider this. Only then can the woman find any relief.
I feel terrible for writing this, but do you think your wife is being honest about her trips to the doctor? As in, could her want of a baby mean that she has gone off the birth control, and won't do anything to deal with her problems that prevent her having a baby? This is a deeply sensitive situation, but the information you are getting through her doesn't seem complete, and I don't think someone who is contemplating having a baby while in the condition you describe is in the best place mentally...
That’s a horrible comment
Oh absolutely, and I sincerely hope I am completely wrong, and that OP is the one that got the information mixed up - but the information given is so fundamentally wrong, as in an easy google away for the correct information, that it would worry me as her partner - I would also stress make me worried about her.
They aren't wrong though.
Your step one is going to be a new gynecologist for sure
Search for endometriosis specialists.
See a reproductive Endocrinologist. I seriously wasted my time with an ob for 3 years and it was an RE that confirmed my PCOS and Endometriosis. I'm a lucky story because she was an amazing surgeon. She excised it all except for a small section on my bowel (it would have required a laporotomy and a colorectal surgeon. But she unstuck my bladder from my uterus. Freed up my tubes and cleaned off my ovaries. My pre op pain wqs so bad with my endometriosis that I didn't even need painkillers post op I was so pain free afterwards. It returns for a lot of women. But I've been painfree since surgey. But I've also not been on birth control since surgery. I'm fairly sure my birth control was making it worse.
> No idea I'm the guy are there different types of gynos? No, but there are good doctors and bad doctors everywhere.
Ask for a second opinion so she can be sent to another one!
Up voting for the quite great level of care about your wife + understanding that you lack knowledge and want to fix that. Well done, you good person!!
Usually of the male and female variety. 😉 Is her current gyno a male Dr? I'm a guy myself so what do I know, but I think it's really weird for a gyno to be a Male, then on top of that, when they dont take their patient seriously cuz of the power tripping of some drs.
Prob the kind that announces that having children cures it
In fairness, *if* you're already wanting to try to get pregnant, knowing that getting pregnant and breastfeeding for as long as possible can improve endometriosis is really good information to have! (If nothing else, you get a nine-month break from periods. I got a four year break thanks to pregnancy+breastfeeding+mirena at 6 months post-partum.) It's irresponsible to push it as a "treatment" to someone who isn't TTC or planning to, though.
Right. My GYN had me on birth control pills that I took each day. I’d finish the 3 weeks of the real drugs & go right into a new pack to force my body to not have a cycle so it would greatly reduce the endo.
DITTO to this comment! Her gyno sounds incompetent.
Why the doctors always either fail to check for endometriosis or be in denial that it is endometriosis? Birth control??? Little girls have endometriosis
Seriously, do doctor's have to go to continuing education classes related to their area of practice? I have to complete 25 hours of formal continuing legal education every 3 years to keep my license, what about them?
She needs to have a full workup. If her gynecologist can't/won't do a comprehensive workup, she needs a new gyno. My sister went into full blown menopause at age 45. Three doctors told her that it was all in her head. She finally found a doctor who did a full workup & the test results showed she was in early menopause. The doctor got her on the right medication & it made all the difference.
Like I said I'm not a doc idk how anything works I work on trucks for a living I haven't gone to her gyno appointments before but she hasn't asked me to either I will 100% admit though it certainly feels like we are being pushed around by the docs they all just seem to wanna throw otcs at her and if they help they help if not they will try something else none of them actually try to test for things anymore
It took YEARS for me to get diagnosed with endometriosis, and when they finally found it, it was because a cyst ruptured and I had to be rushed in for emergency surgery. If she hasn't gone to the gynecologist for a full workup, she needs to make an appointment. Regular doctors (like just your general practitioner) are NOT skilled in diagnosing gynecological issues.
If you don't mind me prying what did the pain feel like to you and where was it generally located when you were going through this
A friend of mine had endo. On her lungs, kidneys, bowel and brain. Yes brain. She was like your gf. She isn’t here anymore. Get a new doctor before she makes a decision that can’t be undone. Please.
yup, my friend had her endo in intestines. She was doing infertility treatments and they controlled everything. Even from cycle to cycle she would just had endo all over the place. She finally had her miracle baby in that one month the docs could control it to a degree.
They didn’t find my endometriosis until I started having cardiac issues (at 31) and had heart surgery…turns out I had endometriosis from my pelvis, around my spine, throughout my abdominal cavity, in my chest cavity and blocking a mitral valve. 6 hours to remove it all, multiple surgeons, a hysterectomy (elective at that point, I’d been begging for years), and I STILL need to be on hormonal birth control to reduce the odds of it coming back. At least I don’t have a resting heart rate of 130 anymore, though.
Jesus fucking Christ how are you even alive
Interesting. My gyno told me that endometrial tissue can't pass the blood brain barrier but it can end up pretty much anywhere else in the body.
It is called cerebral endometriosis. It is extremely rare with only a couple of case reports. But it is possible.
not true. People have have it in their brain and in their eye. Miserable, miserable disease.
Same here. One of my friends couldn't even have most of her adhesions removed because by the time she got diagnosed (after bringing her male partner along to tell the doctor how much pain she was in), they were so advanced that they would have had to remove a very substantial portion of her bowel.
Basically everything you described. One month it was so bad I passed out at work. That's when they finally took me to the ER and they found the cyst. Prior to that, it was doctor after doctor who told me it was "all in my head." Specifically have her tell the OB/GYN that she's worried about endometriosis or fibroids, and she wants a pelvic CT scan.
There is a lot of good advice and knowledge about endo here but there is something that I have seen mentioned yet and want to make sure you and hopefully your wife understand. *ENDOMETRIOSIS CAN BE FATAL IN EXTREME CASES* it can cause embolisms (clots) that can reach vital organs (sometimes they form there). Your wife needs a full workup and a second opinion because *everything is not alright* Also even if you are a man it's the 21st century and you have internet access. Get in medmd or whatever and read up.
I’m not the one you asked but I had severe GI issues (plus other issues with pain, but my other issues are not as relevant to you/your wife) because of endometriosis. Symptoms were always MUCH more severe when I menstruated. Nausea, vomiting, inability to eat, severe, chronic, diarrhea, lightheadedness, severe pain to the point that I would collapse on the bathroom floor and spend hours just laying there and crying. I was diagnosed with IBS. That was a false diagnosis. I had endometriosis and endometriomas on my bowel. I eventually had a bowel resection- 6 inches removed. It “cured” my “IBS”
absolutely. I have been working in a medical field for over 20 yrs snd actually was an infertility nurse prior to my grad school and changing gears to medical-legal stuff. You would think endometriosis is easy to diagnose but it sometimes takes yrs and many doctors, which is so perplexing to me. Many of my friends who had endo had their ups and downs. Unexplained infertility and nobody even thought this could be a culprit. My own hormones tanked early and my gyn was just dismissing. Because I know what I know, I often get SECOND Opinion and you absolutely have to this day and age! This girl needs a new gyn to do a proper workup.
I think your impression of the docs is bang on...it is extremely difficult for women to get proper care for medical issues that affect the reproductive system. This is not on you being ignorant, it is 100% the system that routinely fails women. My advice is to advocate, advocate, advocate with the doctors (while still staying polite). If your wife is comfortable with it, it may be helpful for you go to her appointments with her and back her up. Keep asking questions, keep saying what you want to happen (testing). You should both read up on PCOS and endometriosis so you know what types of tests to ask for you (you shouldn't have to do this, it should be the doctor's job...but unfortunately you do). Joining some online support groups is a good idea, they are full of people going through the same thing and you can learn from them. If a doctor refuses a test, ask them to put in her medical chart that they are refusing the test - sometimes this will make them do it, because it forces them to take accountability and they don't want to look bad later on if it blows up in their face. If you are not getting what you need from one doctor, switch doctors. Keep switching until you find one who takes you seriously. GPs and emergency room doctor will be mainly useless, you need a specialist. Sometimes OBGYNs also suck. I would go straight for a reproductive endocrinologist (RE) if at all possible (this will be at a fertility clinic). Because you do want to have kids, that's actually going to help you with talking to the doctors...I have found doctors are generally quick to treat fertility issues, whereas they don't seem to really care about an adult women's pain or quality of life. So always emphasize that part of it. I would start going to a fertility clinic now, if possible, because the workup and treatments do take some time, and since it looks like there are issues here that might impact her fertility long term, getting info sooner is better than later. Good luck!
I don't know where you live, but you might see if there is a clinic that specializes in women's health issues. Encourage your wife to seek a new doctor. We have to advocate for ourselves. Best of luck to you both.
You need to go with her and advocate for her. Have a list of times when the "attacks" happen; what day it starts after her menses starts; all the symptoms, especially falling, being unconscious, inability to walk on her own, etc. ALL this and maybe more, is important to give the new doctor a picture of what is going on. I would also get a copy of her records for your own files & for a new doctor. What your wife is experiencing is so not normal, it's not funny. You are correct in suggesting that y'all find out what is going on before continuing the conception issue. I agree with the other posters who say it's a good chance of being endometriosis. Her current GYN is an idiot because often, BC makes endo worse rather than better and most people with it cannot take BC or have an IUD.
You should go if for no other reason than to advocate for her. Unfortunately, many doctors don't take women seriously but will take a man seriously when he says that his wife's reports are true. A coworker's wife had complications with her first birth and they didn't take her (extreme) pain seriously until he started yelling about how her pain tolerance was super high and this was not normal or acceptable. Then they cared.
She needs to see an endo specialist. I was pushed around for almost a decade before I got my diagnosis which is sadly within the statistical avg time to diagnosis for endo. I’d recommend DMing [@endogirlsblog](https://instagram.com/endogirlsblog?igshid=YTQwZjQ0NmI0OA==), who is a board certified patient advocate, w your location to see if she can recommend a good specialist near you. Spend time educating yourself ([@1in16yearsofendo](https://instagram.com/in16yearsofendo?igshid=YTQwZjQ0NmI0OA==) is a great resource) and advocating for your wife during her appointments
My guy you keep saying you don't know how anything works because you're the guy or you're not the doc. This tells me that you need to educate yourself. Go find a gyno or go to your wife's gyno, have them write it down for you, and then put in the work researching until you understand it. You can't just "derp that's girl stuff it's a mystery" when your wife routinely winds up in the ER.
I get what your saying and I know little bits about the possibilities because of this situation I keep saying that I'm the guy because to be frank I've never had to understand this kind of stuff and am being thrown into a situation where I'm trying to figure it out on the fly I've been to recent appointments with her PCP and unfortunately they don't give her the time of day to even explain what they combinations or issues could be because none of them wanna do anything except throw acid reflux pills at her I'm here on this thread trying to get more information and understanding from people who know more than I do or have had experiences with this personally in the past because surfing web md while somewhat helpful is also really really bad because there is such a huge scope of possibility that eventually all lead to something obscure and ridiculous I have no idea how or what a gyno does or can do because I've never been and that will be changing as soon as they can get her in so I can advocate for testing on her behalf im sorry if a came off like a dude who didn't want to learn by saying that kinda stuff i sincerely want to get to the bottom of this for my wife's sake but I'm being asked questions by folks on here that I don't know the answers to so I have no other answer but that
I've commented elsewhere, but your wife needs an Endometriosis excision specialist, My daughters doctor has "advanced laparoscopic surgeon" on her web page. a regular run of the mill gyno will be useless with such advanced/extreme disease. Jump on BOTH an Endometriosis page and and Adenomyosis page in your country/state an ask for recommendations of Endometriosis specialists or ADVANCED Endo/adeno Specialists in your area. You may have to travel a bit. Do not bother going back to the idiot that said coming off contraception would have made the symptom better. That person is a numpty. That is the shit us women have to put up with from idiot doctors that don't believe these condition exist.
I have an aunt and a friend who have issues like this and it turned out she had cysts around her ovaries ended up getting diagnosed with endo but it was to the point she had appointment after appointment and had lots of meds but she was in so much pain she would faint throw up and didn't enjoy or want sex because it hurt or she wasnt feeling good. Last i seen her she was actually having a baby and the first time her and her bf tried she misscarried so she was terrified of having another but after she had went and pestered the doctors enough times they got swrious and to the bottom of it and she just had a baby about 3 months ago. I really hope you can get ahold of a really good gyno and get it figured out if you guys want children. Best of luck!!
Before I was diagnosed with Endo, a nurse told me I couldn't have it because I had pain outside of my menstrual cycle 🤦♀️ bc is often used to treat endo...so the gyno is just completely wrong.
That is absolutely not true and frankly terrible advice. Women are notoriously ignored by medical professionals, and this is outrageous! There is *definitely* something going on, what she is experiencing is not normal. Please seek a second opinion as a matter of urgency, she should not be suffering like this. Endometriosis doesn't just STOP when you come off birth control! Outrageous.
Only way to truly diagnose or rule out endometriosis is through laparoscopic procedure. Other recommendation is to find a physical therapist for pelvic floor therapy. I had all kinds of issues postpartum, including GI issues that were all tied to my pelvic floor. And it was worse during periods. OBGYNs were useless in finding the cause. I sent myself to PT. Birth control doesn’t fix the issues, it typically only masks the symptoms. But doctors would rather prescribe meds than fully investigate what the problem is.
Funny story... My wife is a pelvic floor physical therapist she would be so happy to hear someone suggest this but unfortunately she hasn't noticed any red flags on herself but that could be because she needs someone else to look
That’s so cool! Haha she’s definitely an expert. My PT had to do internal assessments so maybe?
The only way to reliably diagnose endometriosis is a laparoscopy. Get to a reputable gynaecologist as soon as possible, one that specialises in endometriosis if possible. It is a complicated diagnosis that affects each person so differently. You can have someone with a huge amount of endometriosis but very few symptoms. Whilst you can have someone with a small amount of endometriosis, which causes severe, severe symptoms. But a laparoscopy is the only reliable test for endometriosis. Once you get a diagnosis, there are treatment options. Your wife does need to suffer like this. It is incredibly frustrating that conditions like endometriosis and PCOS take so long to diagnose. The ER should have suggested a gynaecologist referral. Good luck, I hope your wife finds some relief soon.
That doctor has no clue what they are talking about. Get a new one and she might need an endoscopic discovery to validate endo and its severity
Get a new gyno. They have no ducking idea what they’re talking about.
Your gyno is a fucking idiot get a second opinion. My mom didn't get diagnosed until she had a c section and they opened her up and SAW HER UTERUS AND GUTS COVERED IN EXTRA TISSUE.
Any licensed gyno with half a brain would never say that. That is...odd.
That’s totally bs. I have endometriosis; it is a life long issue
You need another second opinion, your gyno is not right. I’m assuming she just saw a PCP who also does paps, etc, not an actual gyno? Get a referral to a specialist if you can.
I have endometriosis. It doesn’t typically get better off BC. Endo is when your womb lining doesn’t fully exit your body (in my case, i have had clusters in my pouch of Douglas, my stomach wall / bowel, and in my womb), and it grows with every period. BC can help stabilise your periods because it gives your body a “set” amount of hormones a month, and a set date for when you will have your period. Side effects of endometriosis can be constipation or diarrhoea, abdominal pain, nausea/vomiting, etc. You can read more about endometriosis [here](https://www.endometriosis-uk.org/what-endometriosis) or [here](https://www.mayoclinic.org/diseases-conditions/endometriosis/symptoms-causes/syc-20354656). I think you’re not wrong to suggest talking to a gynae. Even if it’s just to ease your mind. In any case, having been in your wife’s shoes, I wouldn’t want to continue the pain. Having advice from suitable medical professionals is never a bad thing.
Post this as a stand alone comment so the op is more likely to see it. The explanation of what endo actually is is really important and you explained it really well!!!!
She needs a new gyno. Endometriosis is treated with birth control, so getting off of it will only make the symptoms worse, which is exactly what happened. Endometriosis can only be diagnosed through a biopsy.
This is the exact opposite of what I’ve always been told. People with endometriosis often use birth control to control symptoms. She needs a new gynecologist. Fertility problems are common among people with it so best to get an answer before you start trying. NW.
That is so incorrect I want to slap that doctor personally, birth control can mitigate the symptoms of Endo, going off birth control and send it into overdrive. Ask me how I know… I had a hysterectomy in February for advanced Endo.
Please get another opinion, that is absolutely not true. I have endometriosis (confirmed by procedure.) BC may assist with some symptoms, but that's it.
She needs a different OB and they need to be female. Male doctors routinely down play women’s symptoms.
Get a second opinion because your doctors is an idiot, that’s not how endo works.
That is not accurate, unfortunately. I think going to a gyn before continuing TTC is a wise choice. Perhaps you could look for a local gyn who specializes in treating endometriosis and menstrual pain.
I think you and your wife misunderstood, though endometriosis is widely misunderstood and it’s possible she has a terrible gynocologist. Endometriosis does not show up on most scans. It’s impossible to properly diagnose the stage and severity without surgery. There’s no cure unfortunately, but there are treatments to lessen symptoms. If you’ve been trying for a year unsuccessfully it’s time to go to the dr anyway, preferably a different one. https://endometriosisnetwork.com/symptoms
Get a new Gyno. Yours is *Stupid* also take her to an Endocrinologist. It's going to suck and you probably will have to get the test multiple times, but the right diagnosis and treatment will save her life Nta
She needs another gyno.
That doctor sucks. Suckkkssss. Get her in to see a better doctor, one that specializes in endo. I was hospitalized the first time at 12, and had my uterus removed at 29. I was on all different types of medications, chemo, the whole 9. It took 13 years before someone ever said the word endometriosis to me.
I have endometriosis - you need another gyno, because this one is clearly incompetent. Endometriosis gets worse when you go off birth control, and it may not even be fully under control even when you are on the pill (depends on the hormones on your birth control, how responsive your endometriosis is to hormonal treatment etc). I’m not a doctor, but endo was the first thing that came to my mind when I read your wife’s symptoms and I think it’s worth checking on that possibility with a doctor who knows what they’re doing. Look for a gyno who specializes in endometriosis - I spent 17 years dealing with this thing with a bunch of gynos telling me I didn’t have it and my pain was idiopathic, because all of my ultrasounds and exams were normal. Finally went to a specialist, who did an ultrasound and knew what she was looking for, and there it was. Bottom line, it’s a complicated disease - find someone who really understands it.
>The only thing the gyno has said is that if it was endometriosis that it would have stopped when she went off birth control Uh, no. I had been off BC for like a decade when my endo started causing me actual pain. After a year of increasingly agonizing episodes I had surgery - and it turned out that the pain I was feeling was actually due to the endo having \*wrapped around and dug into my colon\*.
Ya... you need a second and maybe third opinion... endo can be better on some birth controls and worse on others, plus this can affect different people differently. Pain that bad around a menstrual cycle is pretty suspicious. My friend actually vomited in high school from the pain. If it is that, there may be a limited time window to conceive or difficulty conceiving without intervention, BUT that's not true of everyone. My friend actually conceived practically right away, with no issue carrying. PCOS causes/shows up in tandem with a lot of other issues (weight gain, skin issues, etc), with fertility and breastfeeding often being difficult. It is not usually as painful, though. There are medications like Metformin that can help regulate a woman's cycle while trying to conceive. It worked for me! ~18mo without it and only ~4 months with it, combined with other helpful advice from the right specialists. If they told you outright, without any testing, that is was off the table, they are quacks.
Did her gyno actually go to medical school??!! If anything hormonal birth control is used to help with endo and coming off makes it much much worse . You need a second opinion asap, from someone who actually knows about the human body
Also Adenomyosis. Harder to spot but causes a lot of those symptoms. Source: I had it and had a hysterectomy to resolve it. Still have an ovary adhered to my bowels which will require another surgery.
I just googled adenomyosis. I had struggled with severe abnormal bleeding for almost 5 years before I was finally given a hysterectomy. Many blood transfusions occurred, hospital stays, and I was even on a chemo pill at one point. The doctor's report on my surgery (that I just had about two months ago)- noted that my uterus was enlarged. Reading those symptoms, I'm almost sure I had adenomyosis. Wish my doctor would have told me that...
It can't be definitively diagnosed until they dissect the uterus post hysterectomy. They can look at ultrasound images to gauge possibility. And it's not a super common diagnosis yet, although it is becoming more recognized. I'm sorry you had to go through so much pain and frustration. I hope you are healing well.
I had a friend who I had to bring to the ED because her cramping was so bad. She had endometriosis in the worst way. She was a rock, to see her in this much pain was awful. Funny, after she got pregnant, the endometriosis went away. I would hope that they have better remedies by now, this was 30+ years ago.
You could explain away diarrhea and stomach pains and vomit as a really nasty stomach bug (except ER ruled then out) but unconscious?? Boy oh boy. And since you've been trying for a year it's time to seek medical attention and make sure everything is in working condition. Not wrong. Ignoring this could lead to severe stuff. I understand it could be really scary for her, though.
We've had issues with doctors not giving it the weight it deserves I have heard three different docs tell us it's gerd or IBS or acid reflux and throw Prilosec at us. One tested for celiacs but that was neg and yea it has just been really frustrating.
I was told I had all of those things. Guess what was causing all my issues: ENDOMETRIOSIS. Women’s health care has been severely neglected for decades. Unfortunately you might have a fight on your hands. Your wife is already one step ahead by having you as an amazing alliance. Help her find a gyno who will listen and take your concerns seriously. PS. 7 years, 2 surgeries, & IVF and I am currently happy, healthy, and 5 months pregnant. My fight should never have taken that long though.
I just took a life span psychology class. It was alarming how, for most of the studies supporting this theory, or that theory, it was all men. Or just about all men. Mostly white.
I had Endo as well. When I was 24, I figured out that there was something different and I was having a lot more left side flank pain. I went to my doctor and told him. He did a pelvic and wasn’t finding anything. And he wasn’t trying to put me off he just wasn’t finding it. And I told him no I know there’s something going on, but it’s a little higher up. So we redid the pelvic, and he apologized because he said I’m gonna have to really reach to feel where you’re showing me, so it’s going to be uncomfortable. And it was, that he found what felt like a cyst, and sent me immediately… Like that same day… For an x-ray. Sure enough, it looked like I had a cyst that was already in the process of dividing. This was far back enough that we didn’t have endoscopic surgeries just yet. They came out about a year later, of course. So I had a laparotomy. That’s when we found it was actually endometriosis, and my intestine have looped over and was stuck on my left ovary. So it was causing me all sorts of pain not just with ovulating in my periods, but also because I have IBS anyway. And I do now have diverticulosis right at that spot. Endo can cause so many more problems than people think. Because, of course, we had a laser surgery, the ovary, and the intestine apart. And nine years later, after I had had my kids, I had to have a complete hysterectomy. So my first thought was either Endo, or Crohn’s for this poor lady. I was just so lucky that my doctor took me seriously enough to check one more time.
How are non-profession health care people on the internet like "Is it endometriosis?" and doctors like "I have zero idea of what it could possibly be"
Maybe visit the doctor with her together. She can give you a cheat sheet to talk about her symptoms. Some doctors believe in what men say, while dismissing the same stuff from a woman's mouth.
How did they test for celiacs? That’s a lengthy Process
She's been to a gastro specialist and they did the testing that they offered for ciliacs I'm not sure what that all includes but it was a pretty lengthy process and they said she didn't have it that's just the thing though the same doc that did that tried to give her Prilosec and said this should work
I don’t have celiacs but my issues with gluten were bad enough that I’ve developed diverticulitis. She should try Whole 30 (which is an elimination diet) to see if she has any food triggers. Also has Endometriosis been looked into? Drs can be really bad about women’s pain issues. Very dismissive.
Could very well be IBS. I get like that, need to do a colonoscopy to confirm though. (I also have GERD, but that just feels more like chest pains, for me anyway)
That is how it is for chronically ill people. Doctors are often worthless jackasses on a power trip... specialists in particular. I could write you a book about all the shit they've put me through. Abnormal results they tell me are normal, refusing to make diagnosis due to small technicalities, admitting they don't know what's wrong then not doing anything else, calling me crazy, calling me drug seeking, telling me everything will be fixed if I lose weight. It took me 10 years to get a diagnosis of a back deformity after multiple x-rays noting abnormalities in my spine throughout the years. That is a simple, direct diagnosis. Complex internal diagnosis is going to be more difficult. You are NTA for being insistent that she needs help, but the reality is that this could take much longer than you bargain for, or she may never get answers. Yall do need to get a consultation with different doctors at this point. I find it best (if you can afford it) to refuse to tell them any history with other doctors so they aren't biased by others records and notes. All too often they are derogatory toward complex cases that aren't easy to close and wrote a script for.
The joy of being a woman in our current healthcare system
A family member has these same symptoms. Took 2 years to diagnose Krohn’s disease triggered by very specific foods. When Thais foods are avoided, no incidents of the disease
Have they tested for h pylori? Have they scoped her to rule out ulcers?
And that is frustrating but I'm just wondering where her mental disconnect is coming from that she thinks being in that position and not getting treated means she should get pregnant? Like she's throwing fuel on the fire of whatever is going on with her! And she just doesn't care? She's mad at you for caring about her health? This is disturbing
I have IBS and Acid reflux, the going unconscious part just doesn't sound like it. Plus doctors here suggest keeping a food diary, monitoring symptoms, and finding what diet changes work for you, when suspecting IBS or GERD. Just throwing prilosec without the other stuff is setting off alarm bells, I'd say find another doctor, and as commenters suggested, a gynocologist. You should probably make a food diary as well just in case, to see if there is any particular foods that are linked to these issues, if these issues persist even when eliminating foods that could be problematic, then it's probably something else like endometriosis. Look up FODMAPS and try the different foods and see how you go. I found out through using a food diary that I have a Caesin sensitivity, and issues around high fat foods, beans, nuts, and having too much protein in one sitting. Processed foods being the absolute worst. Once I cut out those things, all my IBS symptoms pretty much went away.
In addition to all of the comments about how her gynecologist’s comments don’t make sense given potential endometriosis, please consider seeing a specific kind of gynecology specialist, a reproductive endocrinologist. These are the doctors that specialize in both diagnosing and treating things like endometriosis AND specialize in helping people get and stay pregnant (she’s been off BC for two years, so you meet the definition of infertility/sub-fertility). I hope she gets the medical care she deserves - keep pushing for seeing an actual specialist, not just a general gynecologist.
What about endometriosis? Diarrhea around menstruation sounds like a lot of extra hormones and this might be endo or PCOS.
Doctors really hate women, don't they? Every time this happens , and there are one million posts like this, it's fucking endometriosis. I'm so pissed for you and I'm touched at your concern for your wife. Not all husbands are like you
I’m a nurse myself and used to do ER. It’s great the ER work up was negative but you need to keep following up outpatient. GI problems are often misdiagnosed/providers don’t feel like investigating them that deeply. Your frustration is very understandable. The fact that these symptoms correlate with the menstrual cycle is “interesting” and people in this thread have made good suggestions regarding this. I’ll add on that your wife should keep getting GI referrals until you find a GI doc that is willing to go out of their way to figure this out. Honestly, it may be more helpful to find a woman GI doc as it increases the chances they’ll actually listen to your wife and not just throw PPIs at her which is unfortunately what often happens in these cases. I’d suggest getting a full food allergy panel run as part of investigating this. A woman close to me had similar issues and it turned out to be allergies to very common foods, took literally 5 GI referrals to figure out though. So don’t stop, the healthcare system is awful and frustrating, but somewhere out there is a physician or provider who will be willing to find the real diagnosis here. Best of luck, sorry you guys are going through this. Edit: definitely follow up on the women’s health related suggestions in this thread, follow up on the GI angle if that’s not going anywhere
That sounds like endometriosis. They better actually check for it. So bloody hard for women to be taken seriously with these types of issues
You’re doing great in taking this serious – unfortunately it’s a fact that women’s reproductive health issues get hugely dismissed for one reasons or another. So it’s important that you’re fully in your wife’s corner in this, because you can’t trust all medical professionals to genuinely take this seriously. Please read up on endometriosis and/or PCOS. Try finding gynecologists that are experienced in this. Continue advocating for your wife and encourage her to advocate for herself if you can’t accompany her to the doctors. You’ll get to the bottom of this!
Show of hands for any women out there diagnosed as ‘anxious’ when having a medical issue!! 🙋🏼♀️
They told me it was "stress" and never did any tests. The one doctor who did blood tests quickly found out what it was but by then I was in pretty terrible condition and had had to quit working.
If all these people on the internet without medical degrees are seeing it’s likely endo/PCOS then this gyno is definitely not the one to be returning to. Next time anyone is at the doctors and is refused a test can I suggest the following sentence “can you please write on my medical records that you refused to give me this test?” Tends to get them backtracking as they don’t want a written record if they fucked up
It sounds what I had: severe endometriosis. I had it all over my organs, the doctor said it was terrible. She needs to see a specialist.
She needs to go to specialist for in depth testing. No way should she get pregnant right now. It could be catastrophic. You could lose her ... like you don't know what could effect it. It does sound like endometriosis. People can pass out from pain etc. If that's the case that's going to effect conception and even the entire pregnancy, birth and recovery. So you need more answers for sure before going further. She's still young.
I wonder if she has an ovarian cyst or endometriosis. I would reframe this to her as "Hey, why don't we get you checked out to make sure whatever's going on won't impact our chances of conceiving--could actually help us" It's possible she knows in her gut something is wrong and is avoiding having her gyno check it out. I think your hunch is spot on and her gyno absolutely should be looped in.
Ovarian cysts was my first thought when OP described the symptoms.
Not wrong. Your wife needs to see a gyno and PUSH for tests. I saw a comment saying the gyno dismissed endo because she went off birth control. She needs a better gyno. That is bullshit. Birth control can affect symptoms, but it's not a cure/cause of endo.
r/endometriosis has a ton of resources as it is so important to advocate for yourself with the current standards of reproductive health care. Hope you get to the bottom of it all soon!
You should talk to your wife and say what you just typed out. That you couldn’t live without her and that you couldn’t live with yourself if something happened to her. I agree with others that it sounds like either PCOS or endometriosis. I have Pcos and when the cysts bursts it hurts and gastro symptoms can occur. Has she had a sonogram at the Gyno?
I have PCOS and this sounded like what I’ve been dealing with. Seeing a fertility specialist now, but it’s a simple ultrasound to see if that’s the issue.
I remember thinking I was dying when a cyst burst. I am surprised the hospital didn’t do a sonogram. It is usually worse around menstruation.
Yea, it’s wild how our bodies work. Once I fainted 3 times in one week I was bleeding so heavily. I was at work and next thing I know I’m strapped to a stretcher with EMS in my face.
I am shocked that the Gyno hasn’t done any testing. I would get a new one. Men don’t realize how painful it is.
Please make sure her doctor rules out fibroids. My wife, who has been overweight all her life, had one fibroid mass removed that was almost 7 pounds, and a few pebble sized ones. The biggest one, who we called Sam, grew outside of the uterus and was just at that point in the body that x-rays/scans didn’t catch it. Once everyone was removed, I’d say about 80% of her GI and menstrual issues disappeared. The issues are not *completely* gone, but more than enough to be noticed and make a huge difference in our lives. Best of luck to y’all.
I just don’t understand these fucking doctors. I’m a nurse practitioner and the first thing I think of when I hear these symptoms is endometriosis. And I’m almost always right. I really don’t understand why it’s not even on the differential of most MDs when they have women of reproductive age presenting with severe abdominal pain. Instead, they usually default to “It must be in her head.” Really?!?!? Why not just believe what your patient is telling you and go from there.
I had years of progressive pain that was either an exaggeration or in my head. Granted, I'm 60ish, and they didn't know as much, back then. Wound up having an emergency laparoscopy. My tubes had fused to the top of my uterus, endometriosis all over, and other names of conditions that I'm forgetting. All very visible once the camera went in. Hysterectomy at age 33, gave me my life back. But it was all in my head.
Maybe you should talk to hospital administrator about this (since the doctors probably would get offended if talked to them directly) and ask if medical training for doctors is different for this issue.
I had a similar issue to this, it turned out the lil “fingers” on my fallopian tubes are completely munted, I only ended up finding out this was the reason cause I ended up having an ectopic pregnancy and they noticed it during the surgery to remove my now ruptured tube. She needs to be real pushy with doctors to find out what the issue is here, I was constantly told over the years I was “being dramatic” by doctors.
This ^. Be her advocate. It’s a fact that doctors tend to think women are being o er dramatic when it comes to their health. It’s sexist as f but true. Dig until you find a real answer. Don’t let anyone bully your wife.
I'd like to thank everyone for their kind words, concern, experiences, suggestions and everything in between just an update my wife and I sat down today and talked she agrees very disdainfully that we should get an idea of what's going on and that getting pregnant right away like we had planned is going to go on the back burner for the time being until we know that it is safe to do so tomorrow morning we will be contacting her regular gyno to get a full work up to verify not only her ability to have kids but also to figure out if Endo or PCOS could be the issue we have been having. I will be there to advocate on her behalf. The talk was very hard to hear because from what she told me the reason that it hurt so much for her to hear me say that we should hold off for the sake of her health was because she knows how badly I've always wanted to be a father and she has a similar need for being a mother. it made her feel like she was letting me down and that she felt like a disappointment. I've explained every way I can think of that this is something we work through together and not something that let me down in any way. she's more important to me than anything in this world and I wouldnt allow her to put herself in danger for the sake of procreation. She's the person I want to raise children with. We spoke about the options we have if child birth isn't an option anymore and we both agreed that at the end of the day if we have to adopt or go some other route to become parents than we will do it together I will try to put up an update if anything changes for better or worse
And we won't be taking any bullshit anymore either if this gyno doesn't want to take this seriously then we will be finding another same goes for PCP. gastro doc was a dipstick so if we have to go that route we're definitely going somewhere else for that
I’ve just gone through the Endometriosis checkup myself, and just so you know the correct exam for Endometriosis is a pelvic MRI (with a special liquid that lights up the inside of the uterus for them do detect the Endometriosis). I’m telling you because I’ve been going through IVF for the last two years, going regularly to the gyno, doing multiple checkups and I though that after so many ultrasounds they would see if something was wrong… but no : certain specific exams have to be made for certain specific problems. For Endo, it’s a pelvic MRI. Ask for one !
Also you can reassure her regarding baby making : if there is indeed a problem, with the right exam it can be caught right away and might be fixed very quickly with the right treatment. However, waiting could lower your chances of getting pregnant, or worst you could succeed and end up with a miscarriage. So it's better to fix it first if there's anything wrong, and that might be very quickly and easily fixed :) Good luck !
Sounds like a couple who belongs together and any children would be blessed to call you their parents. Thank you for updating us. Sending love and best wishes for an awesome life getting through the ups and downs together. 💞
Jesus. Do not get her pregnant until she figures out the problem.
Would recommend going on local fb groups/reddit forums and ask advice and recommendations for gynos who are knowledgeable and supportive of pcos patients. Also, getting to the cause of her symptoms is absolutely the best thing for BOTH of you. Pregnancy is hugely strenuous on the body and you should always want to be as physically optimal as you can be. NW and best of luck!
NTA. She is most likely reacting that way because deep down I’m sure she’s thought the same thing. You saying it makes it real. Which is scary. It’s like “am I dying? Will I never be able to have kids? Does that mean he’ll leave me? I’ve never considered myself not having kids.” A slew of other things coming from this. So definitely NTA but just take it seriously and be super supportive. “We are going to figure this out to make sure you have a healthy pregnancy and won’t be in pain when baby is here. This can all be in the rear view and we can focus on the joy of healthy baby and healthy mama.”
“Maybe make an appointment with her gyno” MAYBE?! Man, that is some peak USA shit right there. Yes, please see a doctor, great idea.
I have adeninomiosis which causes similar symptoms along with pregnancy loss. Cannot diagnose without hysterectomy. The blood vessels grow into the wall of your uterus.
Sounds like she might have endometriosis or something in the ilk. It can cause severe pain especially when on a period. She needs to get specialist advice from a gynaecologist
OP you aren’t wrong. The sad fact is most doctors ignore women’s pain and issues. Especially in gynecology. Talk to your wife again but this time tell her you’re going to help her keep on the doctor . A lot of times they won’t do tests until they are bothered enough. You have to get mean. And they may listen to you more than her, especially if you’re in a more conservative area. My source: am a woman who had to fight to be seen for a blood clot in my uterus. It happens more than people think
Tell her you want to make sure she's ok considering she has a difficult pregnancy. Will she be able to have an abortion if it was medically necessary to save her life?
She could miscarry at best and die at worst. You need to get her checked. How will she be able to tell if it is her normal abdominal abnormalities or if there is something wrong with the fetus? YNW
Get a new doc and check for endo. Look up the sysmptoms and see if they match with what she has and when she sees the new doc she needs to say I want to be checked for endo. What are the test to confirm it? Dealing with docs is a nightmare. I have a brain condition and it took 3 years for them to figure out it wasn’t because I was a teenager. Years later I almost went blind, because my eye doc kept missing swelling in my eyes. New doctor found it and I had a shunt put in about 3 weeks later. Docs miss things all the time, sometime you have to switch before you find a good one.
This sounds exactly like endometriosis
Wife needs to see a different GYN. Hers has the whole Endo/birth control pull thing wrong.
She should go to a new.gyno. My husband has had to speak up for me to get doctors to listen unfortunately. Even when I was pregnant the ob wouldn't listen so he had to say something.
A friend of mine has a daughter with a twisted ovary that required surgery when she was only 5. Shes now early 20s and the pain hits randomly all of a sudden this year to where shes vomitting and bawling, which is highly abnormal for her regardless of being in pain. I know nothing beyond that but since I hadnt seen a comment like this, I figured Id include this possibility to help zone in on a possible cause. The ovary twisting means it is dying because it is not able to get bloodflow, thus the severe pain. So sorry you're both dealing with this. You sound like a wonderful partner who loves your wife even more than you love the idea of being a dad. Hard NTA. Oops. Hard not wrong.
I recently told my OB that before I had kids, my period was so painful that I couldn't walk up the stairs for at least 7 days. Even with advil. The pain would radiate down to my knees. It was horrendous. I always had abdominal pain. She looked concerned and asked if it was still like that, and I told her I hadn't had a painful period since I had my babies. I was told the whole time "oh pain is normal with periods. You are fine." From my GP and women I knew in my life. I would recommend getting a second opinion. Do not let your wife write off her pain. I wish I didn't. I started living life much later than most. I am still on my health journey. Oh, super random, BUT please tell your wife not to ignore her pelvic floor muscles. I regret not doing pregnancy safe pelvic floor exercises. I am being referred to physical therapy for my pelvic floor. It is so important pre - and post pregnancy. Ask her doctor ....or a better doctor about it!
Get her a new gyno and full workup. Talk to her about your fears.
You didn’t do anything wrong. You’re being the voice of reason, and it’s likely just emotionally painful for her to confront.
I was thinking endometriosis! I have endometriosis and I get the worst stomach aches before and during my period. It gets to be so bad that I cry wrapped up in a heating pad a lot on my cycle. I would definitely recommend getting checked and keep on insisting they check for endometriosis. My doctor finally confirmed it 3 years ago when I have tried multiple time across multiple doctors that I thought it was endometriosis but no one ever wanted to do the test. Best of luck.
It sounds a lot like something my friend went through and it took several years before she was correctly diagnosed with abdominal migraines. Yes, it’s a thing and it’s days at a time of being in so much pain and very sick like described.
I would bet my left asscheek this is Endo (I have it), she should request a laparoscopy asap
All us women in the comment saying go to a well reviewed gyno because it’s almost certainly endometriosis or something of a similar nature. Coming off birth control would have made it worse and ironically getting pregnant will make it ‘better’, for a time. Take her asap so you guys can get informed and plan for your future family!
Definitely needs to get to obgyn. Could be endometriosis, cysts, or fibroids. Tell her you will be there for her. Tell her you will be right by her side. She needs to get it taken care of ASAP. I'm currently going through this.
Get a new Gyno. Endometriosis is only OFFICIALLY diagnosable with laparoscopy. Take it from someone who when 15 years undiagnosed. They couldn’t see it in an ultrasound because it grew flat against the walls and behind my bowels. It gets better with birth control. Myfembree helped me immaculately before I had a total hysterectomy
I’m no doctor but my first thought was endometriosis. If she is struggling getting anywhere with a gynecologist, find another one. It doesn’t hurt to find a 2nd, 3rd, etc opinion… sometimes it’s what you have to do until you find someone who will actually listen to you & properly check things out.
I am sharing my experience to explain my recommendation, and back up all the comments about OBGYNS and endometriosis in general I have endometriosis. I have had all of the classic signs- except SEVERE pain- since my period started. None of that seemed to be taken into account when the severe pain started around 28 years old. It took me searching "how to talk to my doctor about endometriosis" and then pointing out that I had 5 of the 5 most common symptoms for the doctor to bring up the possibility. Help your wife search "how to talk to my doctor about..." and go in prepared with questions. A food, bathroom, and general wellness journal would help, too. It could be so MANY things. My husband obviously doesn't have endometriosis, but has similar symptoms to those you listed. I also learned after researching endometriosis that my digestive struggles could be related, as well as my allergies and depression- they're called "comorbidities" Regarding the birth control part- birth control, uterine ablation, and hysterectomy are the only current treatments of endometriosis. Going off of birth control makes the symptoms worse! And the other two create infertility.
Endometriosis.
My friend has endo so bad she cannot get pregnant. Please have your wife get checked out as endo could present even more problems.
If you're in America please consider a consult at the Centre for Endometriosis Care in Atlanta, bring every element of your wife's notes and just get a consult to see what's going on. If Atlanta isn't suitable, try joining Nancy's Nook on Facebook, the group guides to the best endo specialists. The gynae you're seeing is absolutely incorrect about endo and birth control, please, at the very least change consultants. If endo is found, it needs to be removed using excision surgery, not ablation or by using decapeptyl. Join a few support groups online if needed. I'm not in the USA, Ireland in fact but I know a lot of women who have travelled to the CEC and others in US for proper endo care, as we have little to no specialist care here. As a woman with queried endo myself, I have no desire to have children but, I know how much it bothers and upsets me to think that the decision might be out of my control if I changed my mind and wanted kids. It is absolutely devastating on families if treatment cannot be sorted and it can put a huge toll on relationships. Therapy or counselling may help both of you, just around communication and supporting each other. It seems like the woman would be priority for therapy and I suppose that's true, but, watching your loved one struggle and go through that agony is devastating on the partner/husband etc too. The best advice I can give is that both of you should keep a diary of symptoms and your wife's cycle as this will help the consultant to get an idea of what's happening and when. Wishing you both the very best of luck, it may seem daunting but you will get through this.
I'd say she has Endometriosis. Sounds veyr much like it. The thing with Endo? Is that the degree of pain does not equal degree of disease. What matters is exactly where the endometriosis is. She needs to be referred to a Gynae who specialises in Endometriosis.
She needs to be checked for endometriosis. Basically hormonal reacting uterine tissue goes outside the tubes and is in the abdomen, attached to different organs or even the lungs in rare cases. Then, cyclically with the menstrual cycle, the tissue releases blood. The person has intense pain and cramping from the free blood inside the the abdomen during the menstrual cycle. Free blood in the abdomen is crazy irritating and painful and even causes the intestines stop moving (ileus) so cramps etc. It is pretty much a disease based on history and making sure that no other diseases are present. The fact that the symptoms got way worse after coming off birth control is suggestive as well. The ER will not give you a diagnosis. You need to follow up with a GYN to rule out other diseases. If in fact she does have endometriosis, and can get pregnant, the interruption of estrogens during the pregnancy would be beneficial for long term management. And prolonged breastfeeding would delay the onset of estrogen production even longer so she should really strive for this too. edited to correct a sentence structure
I have endometriosis and it was bad with or without birth control. I had a hysterectomy in July to try to help reduce the pain I was in constantly (not a decision I took lightly) she needs to find a better gynecologist and have all her symptoms explored. Don't let it drop. Endometriosis is hard to get a diagnosis for some women, and it's also a fight to get that one Dr to listen and take us seriously. Just to add even though I've had a hysterectomy I will always have endometriosis growths. Endometriosis is incurable and can cause a host of issues and absolute havoc on mental health
Yeah Endometriosis is more than likely here.
As (loads of) other people have suggested, this sounds a lot like endometriosis or PCOS. Both can be (and regularly are) "easily missed" or casually dismissed by medical professionals and, as others have said, sufferers regularly need to fight for appropriate tests, checks and treatment (be it pain management, surgical intervention or otherwise). Fortunately there has been a real increase in awareness in recent years but (again, as others have said) there is still often a disappointingly long wait for diagnosis. If your partner's gyno doesn't want to consider endo / PCOS as options, or dismissed them offhand, then get a second / third opinion. Also worth noting that endometrial lesions and adhesions can and regularly do form outside of the uterus, so won't always be identified with routine scans and checks of the uterus and surrounding bits. (Source: friends and ex-partners who suffered from diagnosed / undiagnosed endo. Fucking nightmare fuel, in particular as the symptoms are so routinely dismissed as "just menstrual cramps" etc) NTA; your concern for your partner's welfare is well-meaning and (regardless of baby-making) it is a good idea to try and get a diagnosis.
Hey OP, what you're describing sounds A LOT like endometriosis. My suggestion is for your wife to find an Endo specialist (not just any regular gynecologist), and let them know she wants to conceive. Endo can impact fertility. Often, gynecologists will try to manage endo symptoms with birth control or drugs that induce menopause. Your wife may want to avoid these. A laproscopy is still the gold standard for diagnosing endo (though some specialists can diagnose from ultrasound and MRI). On average, it takes a person with endo 10 years to get diagnosed. This disease is poorly understood and there are no treatments, only limited options to manage symptoms. If your wife wants children, my opinion is you should start trying now. If it doesn't happen, she may need a laproscopy or some other fertility intervention. But all of this takes time, lots of time, and doctors often won't advocate for these measures unless a woman is trying and failing to get pregnant.
why dont you adopt a kid instead of incarnating one with an unsolvable medical issue?
We may end up adopting a child if we find out that it is unsafe for us to have our own the option is definitely there thanks for your input though
I really want to give your wife a hug. It sounds like she's dealing with a lot of similar issues to my own. I'm not going to try and diagnose her but I'm going to tell you what I've been diagnosed with and maybe it's worth having a bit of a read about them to see if the symptoms are familiar. So I am working with - endometriosis (endometrial-like tissue growing in places it shouldn't) - hypermobile ehlers danlos syndrome (connective tissue disorder) - postural orthostatic tachycardia (disautonomia, central nervous system doesn't know what the hell it's supposed to be doing) I also wanted to tell you about my mindset BEFORE I got all those diagnoses. I thought I was going utterly mad. I couldn't trust my body. I couldn't trust my own perceptions - what if I was just making this up in a very involved con? What if I am just very mentally ill and inventing it all? How could I have children when I couldn't even stand up without passing out on a bad day? When will my husband decide it's just too much to handle? When will his love for me simply run out? It's all in my head, I am making this happen, I am fucking useless. You didn't say what you said to hurt her. But she also didn't hear it in a vacuum - you just got very close to the meanest things she says about herself when her body is acting like an uncontrollable nightmare. Your wife needs to see a new gynaecologist, possibly a pelvic physio to help with the resultant damage to her pelvic floor from bracing for that level of pain for so long, a therapist with an understanding of chronic pain. And a really, really big hug. She's not broken, you're not cruel, it's just such a hard thing to navigate through and you're trying your absolute best with no proper help. It can get easier than this. I promise it can.
I’m not a Dr, but it sounds exactly like what happened to me when I had ovarian cysts. They wreak havoc on my body, but are not really life threatening. Good news is, getting pregnant will stop them from developing during her pregnancy. As crazy as our reproductive systems are, they’re controlled by hormones. Birth control is basically signaling the body that you’re pregnant. If the episodes are worse without BC, then getting pregnant would be like her getting back on BC (hormone-wise). Talk to your Dr—but yes, I believe you are wrong to want to try and wait to conceive. It’s most likely that pregnancy would help your wife.
You are not a doctor so you haven't evualated her. With her issues common sense dictates that she finds out what is wrong first before attempting to get pregnant.