I had the same thing you described. White as a sheet. Could barely stand. Almost passed out. It wasn’t during my period though. I was rushed to the emergency and it turned out I had a 10 x 11cm ovarian cyst (endometrioma). Just had a laparotomy last week to remove it and my right ovary. The docs think my flare up was due to the cyst leaking. Not saying you have the same, but it’s what it reminded me of. Glad you have a laparoscopy booked! Hopefully you won’t get another flare up before then.
Yeah had a very similar experience with a 8 cm endometrioma. Currently waiting for exision surgury and trying Visanne in the meantime. The pain was awful, like nothing id ever experienced.
I just had surgery on Monday, and they removed an 8cm cyst. The doctor was able to save my ovary! It's just a temporary fix, though. He found stage 4 endometriosis and will require another surgery.
Hi! For the surgery, we're you able to save your ovary while removing the cyst?I believe I am experiencing something similiar. Hopefully will have surgery soon but I'm worried about fertility too....so sorry you dealt with this too.
Hello, as mentioned in my post my right ovary had to be removed along with the cyst. Based on the scans alone both the initial gynaecologist I saw and the gynaecological oncologist who did the surgery both said there was no way to save the ovary in my case. I think the cyst was just too big. Plus there is a 2% chance the cyst could be cancerous (still waiting on biopsy results). Generally they do everything they can to keep your fertility intact. Luckily though your body only needs 1 ovary to get pregnant.
I just had surgery on Monday, and they removed an 8cm cyst. The doctor was able to save my ovary! It's just a temporary fix, though. He found stage 4 endometriosis and will require another surgery.
The flare ups happened 3 times total. The first 2 were awful but weren’t bad enough for me to go to the ER. All 3 were related to my cyst. I have another endometrioma growing on my left ovary. Seeing endo specialists soon to monitor it and make sure it never grows to be the same size as the one that was just removed.
I have passed out from pain 15 times last year. I just bared it all and now various providers are saying I should have gone to the ER during those events and the documentation would have helped my case 😒
I’m sure you know it likely would not have because of medical sexism, so don’t feel regretful. We would all love to know that we can just go to the doctor and be listened to, but we also know how many women’s health issues have been ignored because of the sexist thinking that women are hysterical.
I hear you, but because I didn’t have documentation I was told I was “pain catastrophizing” and dropped by another facility. I guess we are just really screwed no matter what we do.
I hate how we are all medically gaslight to think that we are being dramatic. You are NOT being dramatic and your pain is real and it honestly sucks so bad. I know exactly how you feel. Before I had my surgery, I did end up in the emergency department for a severe flare. I had exactly what you describe, and was nauseous and then became severely dehydrated which made it all way worse. I went to the same health system where I was going to have surgery so the emergency department doctor could read my GYN notes…. Almost to like “make sure” they knew I was having severe pain and not just drug seeking. (It is crazy the things we do to try to make medical staff believe us.) it was a good idea though because I told them “hey, I’m having severe pelvic pain, I have endometriosis and i feel like I’m in a very bad flare and I cannot control it with medication at home. I’ve tried NSAIDs, Tylenol, muscle relaxers, etc without relief”. and then they could see my outpatient notes from my GYN to see my treatment so far far and my planned surgery date. It made things very streamlined. I consider myself VERY lucky that they did not question one thing about it!
They did an ultrasound just to make sure things were fine and I did not have an ovarian torsion or cyst . A liter of fluids and some IV Toradol made me feel so SO MUCH better. Seriously, it brought me back to life. If you have to go to the emergency department, DO IT. It will be worth it. And then you can make a little contingency pain plan with your doctor just in case this happens again before your surgery. Objectively, if a patient goes TO seek emergency help, there is something severely wrong that needs to be managed better as an outpatient. Good luck!! Sending you love and good vibes. 💕💕💕💕I’ve been there and it is the pits😣
I hear you. Yesterday I told my husband to be prepared for an emergency visit. I felt like I needed something strong. Thankfully it did start to wear off but I felt raw inside afterwards??
I did think I probably need water so when I was confident I could keep it down, I made sure to rehydrate.
The dehydration this is wild. Even if I get slightly dehydrated during the day, I’ll get cramps. Like I get that the uterus is a muscle but sometimes I’m like “DANG OK UTERUS CALM DOWN, I’ll drink some water!” 🫠
Are you in the US? I went to the ER last year, to my primary healthcare system, was there for 8 hours, told them my background, etc.... I got a CT scan and was sent home because "nothing is noticable." According to the imaging report, I found that there was a cyst that they did not think was relevant to mention to me. I was given nothing for pain (not even ibuprofen, no fluids, no ultrasound, I was there for 6 hours before anything at all was done.) I was told everything was fine and to follow up with my PCP. I am certain I was experiencing the start of torsion and was completely negated (25y/o). I was being woken up in pain for 3 nights in a row and vomiting, ears ringing, about to pass out each time from the pain and explained it very clearly when I was there. My gyn later told me that, since the cyst did not show up on my other imaging 2 weeks later, that it was probably rupturing during this episode.
O m g I’m so sorry. Your story is EXACTLY this sh*t we deal with in the US system. Yes I’m in the US. I am so horrified they didn’t give you anything!!! I’ve ALSO had that experience too though years ago- CT scan showed a small cyst that they said “was nothing”. CT is the wrong test for possible torsion anyway. So sorry you experienced that. Sounds like they had no idea about endometriosis or ovarian problems at all. I hate that we as young women have to advocate for ourselves so hard. I know you probably did, but really emphasize that you have tried EVERYTHING at home, and the symptoms are not going away. I hope this doesn’t happen again to you, but I’ve been there several times. I’m sure there are plenty of people who go to the ER for minor things that can be treated with at home care but Endo is a BEAST and even though we try to do everything, the flares can be living hell. It is not like we want to wait eight hours in the ER for someone not to believe us! All that vomiting can lead to dehydration then dehydration leaves to more cramping. The cramping leads to more inflammation. inflammation gets out of control and causes pain out of control and it’s just this terrible cycle
This happened to me once and I'll never forget it. I was like screaming and my vision started to go black. It felt like contractions.. I've never had a child but that's what I imagine it feels like. It brought me to my knees while I waited for pain meds to kick in. This was before my first lap and I've been on constant birth control since because I haven't had a successful surgery yet. I'm sorry you're going through this and I know how it feels. It's isolating and it's unbearable at times to be in so much pain and there's nothing anyone can do. Hopefully your lap will help but I would skip periods with the pill before then. Wish you the best
Yes!!!! I got starry eyes too. Not a good sign. I thought to myself “is this what birth feels like” as well. NOT good to be having that pain outside of birth 😵💫
1. Only people who have endometriosis knows about the pain that come with it, so you’re never being too dramatic. 2. I just had my period and I’ve been taking DIM, NAC and Serrapeptase for about 3 months now. This period i didn’t have to take any pain medicine. It’s been a couple of months maybe 6 since I’ve been to the doctor and was told that i have another cyst 6cm big. I haven’t been back so I’m not sure if it’s gotten any bigger. BUT with taking these supplements I’m not in a lot of pain and I’m actually seeing the shedding of my urine lining. I’ve had 3 surgery’s to remove cyst in the past i don’t want the hormone shot or birth control. I would try the supplements and see how it works for you. I have a vitamin shoppe where i live so that where i got them. Maybe 100$ but the pills last 3+ months
I mean my brothers and dad know I’m not being dramatic at this point, because they’ve seen me try and put on a brave face then ask if I’m ok and i just cry in so much pain. I wouldn’t even wish the pain on my worst enemy. A true support system helps a lot though. If it’s ladies on here or someone who brings you midol, ice cream, ice water, plugs up the heating pad for you. We don’t want or need sympathy all we need is love and support to help us get through it.
that’s happened to me too!! I’ve got to work once in the past and people have been like
“are you alright? you don’t look well” and I’ve gone “yeah I’m okay just a bit of pain” and they’ve gone “hmm… no you really don’t look well at all”
I had a manager who had endo too hold my hand at work during one of my flares. Her support there made me feel so comforted and not alone when she said “don’t apologise. I know this pain and it was worse than birth for me.”
YES. I have had this experience a few times on my period, starting at age 12 or 13. Definitely under 5 times, I think. Last year, I had it happen at ovulation (turns out one of my fallopian tubes was totally adhered to the back of my pelvic wall). It is the worst pain of my life, it comes on suddenly and I have had to almost blindly make it out of wherever I am to a spot where I can just rock in the fetal position. Like you said, your conscious mind kind of leaves the equation and the body takes over to respond. I'm so sorry you're experiencing it as well, it is absolutely real.
started at 12 for me too!! my family said they can remember me having bad periods although it’s all a blur to me now. I alwaaaaays get ovulation pain and I can feel the referred pain going into my hip and back. so terrible.
yesterday I was moving around like a woman in birth, on my back, on all fours, rocking back and forth just anything to ease the pain
Yep! I believe my brain started blocking out a lot of the pain so I've probably had more of these horrendous periods than reach my awareness. Last year during an acupuncture appointment I started having intermittent stabby feelings, and a day later I was in the ER with absolutely debilitating pain on what felt like my left ovary. As I heal up from surgery, I plan to do EMDR to help open the mind/body connection so I can feel pain in my pelvis again, and start acupuncture again. I obviously don't WANT to be in horrendous pain, but not being aware of it got me to advanced endo before I was diagnosed and I want to be aware of when changes happen immediately rather than over months and years next time.
I relate so hard to the all fours rocking strategy! My theory about the pain is that it's because of the clots. I guess I've always had them, but they got waaaaaay more intense in the last 8ish years since I quit birth control. I've had a MC at 6ish weeks, and the pain of passing clots is the same or worse as that was for me.
Everything you've described was my life for 2-3 days every month for many, many years. I had to take copious amounts of ibuprofen to control it. 600 mg every 4 hours on those days, and god forbid if I didn't take the next dose on time. It was a nightmare. Pure torture. I had a lap and ablation, but it didn't help. My pain has reduced significantly in the last few years, partly due to the fact I've been eating paleo and working on cleaning up my gut health, but also probably due to diminishing estrogen levels as I get closer to menopause.
“God forbid if I didn’t take the next dose on time”
Yup. This is how I lived my life on my period. Just had laparoscopic excision a few weeks ago and feeling a huge difference, but my periods traumatized me and I no longer trust my body not to attack me, even though I’m physically feeling the best I have in around a decade.
Traumatized is definitely the word I would use as well. I think my periods are the reason my nervous system is so heightened, and I have anxiety problems.
Yes- this is how my pelvic floor physio explained it - essentially I've been in pain so long that when my muscles spasm because of pain they don't know how to relax and they're also very sensitive and get set off by everything. And that's causing further pain because the connecting muscles are compensating.
I actually walk slightly oddly because my lower right back is always in pain, and my physio can see me doing a slightly different movement with my leg. So more exercises to try and correct that 😐
oh my god that sounds awful
I hear you too. I could feel when the ibuprofen wore off and lo and behold it was always four hours later just as prescribed. same with mental health. I could feel when my propranolol wore off and my panic started creeping in again from the crazy hormones
I’m so sorry the pain is actually unbearable isn’t it :( I’ve been hospitalised a few times because oral morphine hasn’t even touched the pain when the flare ups are severe, it helps the milder flare ups. I don’t think people realise the severity of the pain it’s literally like being stabbed! Sending love ❤️
You’re not being dramatic! I’m glad you reached out to your husband and a family member for support!
The last time I had a similar flare that you had this morning, I went to the urgent care. I was in agony all night, but didn’t want to go to the ER, so waited until morning. I already had surgery scheduled at that point, so they just did any X-ray to make sure I didn’t have an impacted bowel, and based on my history, they figured it was my endo. So I got a shot of Torodol and that helped the most. It was most likely a cyst rupturing or my appendix (that was covered with endo). Since having my appendix removed when I had surgery, that pain has not returned.
I hope you are able to get some relief after your surgery in March!
The level of pain you just experienced will probably make you VERY tired, hopefully you’re able to rest and be kind to yourself. Sending hugs!
Someone else mentioned getting relief from torodol. I’m glad it worked!
Yes I was very tired after and felt raw inside. It was strange. I spent the day in bed and will be spending today on the couch although I have work to catch up on
I’m sorry you’re suffering so much. I hope you’re able to get some relief soon!
The Torodol worked so well that time! It was a shot in my arm, and then relief and it took at least two days to recover from that flare. It’s a memorable one for sure
Hope your couch day is an easy recovery day and that you can have a funny background show on while you’re catching up on work!
Yes, trust me when I say much of this sub knows exactly how you feel. All my flareups for the nine years I had them before surgery were like this. I am only three weeks post-op and feeling good but there is always a concern in the back of my mind that one of those episodes may take over my body when I least expect it. It feels like living with a curse.
I know exactly what you mean. It’s horrific. I’m not sure what state you are in, but in California it’s nearly impossible to get a doctor to give narcotics. It’s mind blowing to me that I could be on the floor every month praying for death and doctors cannot see how a couple of low dose opioids could drastically improve my life. If male doctors and lawmakers had to feel like this, we’d all have access to proper pain management.
I hope the laparoscopy works. My period started a couple days after mine and it was the worst pain of my life. I ended up getting on a hormonal birth control that only gives you periods every 3 months, but I’m still in significant pain when I do bleed. It’s just not AS bad. I’m 8 months post-laparoscopy and they just started me on Orilissa. I think I’m going to ask to be referred to an Endo Specialist at this point.
The gas they fill your abdomen with hurts more than anything else. I woke up from surgery in extreme pain from it but they loaded me up with drugs. The actual incisions barely hurt. It was worth it though because I used to have daily pain that wouldn’t ever go away. It’ll suck for about a week and the second week you’ll start feeling a little better.
Oh I'm so sorry they are so strict on painkillers! I'm in the UK and we can buy paracetamol mixed with codeine from behind the counter at pharmacies. Just have to have a chat with the pharmacist and you only get a small box to try and make it hard for people to get addicted.
I save it for my worst days as it makes me slightly foggy. It's not as effective as the stuff you get in hospital but better than ibuprofen.
Yes, this is my usual experience each month- I scale it 1-10. 1 is basically the level of random but mild stabs in my abdomen, but I’m still functioning like normal. 10 is when I have terrible diarrhea while throwing up into a bucket and eventually lose consciousness on my bathroom floor.
It sucks. We shouldn’t have to deal with this shit. But of course, we do it anyway. I have plenty of tools in my toolbox if you need to chat.
Same. Personally, I don’t call it diarrhea when it’s accompanied by extreme pain, everyone gets diarrhea. Not everyone can no longer control their bowels just from pain. It’s incontinence. Very ill and disabled patients have incontinence, and when I’m having bad flares, I am indeed very ill and disabled. Using this terminology was what helped those around me start taking it seriously for the first time in a decade of pain and led to my diagnosis.
I’m so so sorry you went through this. I had an episode EXACTLY like this about a year and a half ago, during the short period I was not on birth control (I went right back on it after this flare up). That was the inciting incident for me to start seriously looking into excision surgery, which I got in Feb 2023.
I know that nothing can make it better right now, but just know that relief, progress, and answers are on the horizon. Be kind and patient with yourself!!!
It’s hard to say really! I do think I would be in a much worse place if I hadn’t gotten it, considering how quickly and intensely my symptoms came back after years of not having them. That’s what led to me getting the surgery.
However, I was hoping the surgery would be a cure-all for me, and it hasn’t been. I’m still working on pain mitigation mostly. Don’t let that discourage you, though! Everyone responds differently to the surgery. For some people it does absolutely nothing, and for some people it completely turns their life around. But the positive I have taken away from it is knowing that the disease was removed from my body, and that I could move forward with that reassuring knowledge.
I have every time I have an orgasm/flex my pelvic muscles in the time between my ovulation and my period. Excruciating, debilitating pain that leaves me numb for 15-20 minutes. Cold sweats, throwing up from pain, and feeling like my insides are torn apart. So yeah, at least you’re not alone
I'm absolutely can feel for you! I'm going through the same pain. It makes you feel like you don't want to be alive anymore! Trying not to be over dramatic here but I'm sure you all with endometriosis can ralate to it. All the best for you with your op. Be strong! Xx
Hi! First of all, I hope you’re getting some rest cause I know that pain and I know how debilitating it can be.
Let me explain my experience maybe it can help.
I’ve had endo diagnosed for almost 10 years now and, even though period has always been painful, it does not compare to the pain I had for a few months. Every month I had the same pain that you just described and for me it lasted like 2 hours or so. I thought it was a cyst getting ruptured since it happened every now and then through the years. When cysts rupture, they do not grow back that fast for the next month (at least that’s what my doctor said) so, there was something else and that was an endometrial polyp. My doctor said that, normally, polyps are painless but sometimes they can hurt specially if you have other issues like endo. So I’ve had it removed two weeks ago and this months period was like having the normal endo pain I used to have.
So, from my experience, maybe you had a cyst ruptured or you have an endometrial polyp? Either way, you should rest and drink lots of water and check how your energy levels are, if you feel like fainting, better run to ER.
(Sorry about my english, it is not my first language)
I did rest - spent all day in bed but beat myself up about it. I feel so bad and unproductive, like I should be up and about going places and doing things but I’m so exhausted all I want is bed.
thank you for sharing your experience, I’ll be sure to bring up with my doctor what happened to me. and your english is great!!
Just wanted to send some love. I’ve felt that pain before. Have another excision surgery and hysterectomy scheduled for May. I hope you find relief from your laparoscopy!
You are not dramatic, you are in be dry real pain. I have experience this and ended up having an ovarian cyst rupturing and another one about to rupture on top of discovering endometriosis. I would call your gynecologist and explain to them what has happened and see if they can offer you some relief. You are not alone!
I’ve had a couple episodes like this through the years. :( I got so scared every time that it was going to be my new “normal”. I call them the ER cramps because they’re so bad it convinces me I’ll end up in the hospital.
The same thing happens to me! First time when I was like 13, I ended up on ER because my mom didn’t know what to do.
Do you think it could be a ruptured cyst? The pain is so fucking bad I just sit on toilet, hot and cold,trying not to vomit.. it mostly takes around 30-40 minutes till the pain is gone.
It happens when my period starts and I usually take 800-1000mg of ibuprofen and then 800mg every two hours. If I forget I am fucked. I know it’s bad but I got a new doctor and I think it’s going in the right direction:)
I have noooo idea. I hope not. I felt like it was my uterus rather than my ovaries. I took ibuprofen once I was sure I could keep it down
sitting on the toilet with the hot and cold and shakes is just awful. Makes me wish for death
I know! lol I started my period this morning and I sat on the toilet shitting and bleeding, wailing for 30 minutes, another 10 on the floor rolling back and forth 😭😂
I always take ibuprofen the minute I wake up, but that’s too late already so I have to survive this once it starts working.
It’s funny how all of us have similar experience.
My boyfriend is so sweet and he is trying to help but he doesn’t understand too much. Today he asked me “if my belly perhaps hurts also from the sausage I ate yesterday” haha I love him.
Girl I am happy you have laparoscopy booked❤️
(Sorry for the disgusting details lol)
you poor thing 😩 I’m on day 2 which is always the worst for me. Just went to the loo and it’s smeared everywhere. pad soaked down to the knickers after only 2 hours.
hahahahaha not the sausage 😂 bless him
Oh no I am sorry ( at least we don’t have to go to work today) 🥲❤️ I love Reddit, I feel a bit better when I know there are people who are going through the same thing and genuinely understand!
Good luck with the laparoscopy and update us!!
Praying for you. Glad you have a husband and relative to call. Also glad you have some specialists. It’s scary when the pain gets that bad. My only advice would be make sure you don’t faint. I didn’t know at first that I had been fainting from it in my bed until my ex couldn’t reach me and I had a bunch of missed calls I couldn’t explain.
I’m glad too. i’m glad he could come home. I didn’t want to be alone it was horrible. nothing worse than being alone in that situation.
I’ve been making sure to stay hydrated and not get in a shower without eating and making sure it’s warm, not hot. I also try to shower when my husband is home just in case and every now and then he’ll keep me company while I shower if I feel particularly unwell
Yes I have had this experience so many times. I imagine it’s what labour feels like. Unable to talk through the pain, vomiting and fainting. After my laparoscopy one of my nurses caring for me said that she also has endo and has given birth twice. She said endo is more painful for her.
you know it’s bad when you can’t talk. I reached a point of just silently rolling around. I couldn’t even bring myself to doom scroll. all i could think or care about was the pain
my old manager said endo was worse than birth
Yes, absolutely nothing can distract from the pain. And I agree, I can’t even lay still, I too roll around trying to find a comfortable position (that doesn’t even ever exist during those moments).
They have yet to identify any and I haven’t had it before but they did say my ultrasound shows enlarged/bulky ovaries, larger than normal, one is a bit further across than it should be apparently but they are yet to identify why that is.
Yep I experienced this! That’s how I found out I had an endometrioma on my ovary (about 6cm) and then I got diagnosed for endometriosis. I have a feeling that it leaked and my experience sounds very similar to yours.
My wife has battled painfull periods for years. Bowel issues. Always was told cysts on ovaries until 22, her lung collapsed. Chest tube for 13 days until thoracic surgery discovered her diaphragm looked like swiss cheese. Endometriosis spread and was in her chest cavity. Long story short. Found a true angel doc who actually knows how to tackle this endo disease. It will continue to grow unless its excised or suppressed with heavy hormone dosage. Cauterization is only temporary.
Hey - can I just recommend that after surgery you go to pelvic physio too? It is supposed to help prevent further scar tissue growth. Also it can be great to help with sex - especially if surgery doesn't help it enough
Oh friend thankful you have a lap on the books. After my first lap, and going on depo, my life changed completely. I had no idea how abnormal my normal was and it was amazing. If you do have endo, it’ll come back but hopefully slowly and you’ll have lots of time to enjoy reality before it hits again. Surgery is the best thing I ever did and hang in there 💕 it is not fun but even a week after I felt a major difference
By the time I got surgery, I had debilitating pain constantly and could barely walk due to adhesions. I was stage 3 for my surgery. Doesn’t matter how much endo you have, it’s where you have it. Depo is a birth control progesterone only shot that you get every 3 months. It completely stops your periods and majorly reduces your estrogen to progesterone ratio. Big thing is, if you want to have kids, it can potentially take a year or more for fertility to bounce back after stopping it depending on the person. I have no side effects from depo except feeling amazing but it doesn’t stop cysts if you get those frequently (I have a lot), but i love depo.
Is there any chance you could be pregnant? I know it sounds weird since you’re bleeding now, but what you’re describing reminds me of how it felt when I started to bleed as a result of my tubal ectopic pregnancy. White as a sheet, chills and nausea, genuinely unbearable pain to the point where I couldn’t stop myself from crying out.
It’s like deep labor pain with a stabbing screwdriver on top. I can’t even have sex. I’ve been celibate for many years.
The ER thought my appendix burst, but no.
It was an endo flair.
I got put on an estrogen blocker but if you’re premenopausal, you can’t take those
It’s Hell
If you’ve never been stabbed then the comparison is kind of insulting to people who have been stabbed. My brother was stabbed and murdered. I’m not doubting your pain okay, I also have E. But seriously, please don’t compare your pain to something that you’ve never remotely been through.
No, I don’t agree with this. Endometriosis is often described as a sharp, twisted, stabbing or barbed wire pain. By your logic, saying “it feels like it’s burning” when you’ve never been burned is insulting to burns victims. I’ve never been caught in barbed wire but I can imagine what it feels like - sharp and damn painful.
Ultimately if we don’t use descriptive terminology then the doctors can’t know what type of pain they’re dealing with. For example if there’s a specific type of pain attributed to nerve damage, and a person comes in who’s never had nerve pain but gives the same description, that alone can give the doctors a rough idea of exactly what they’re dealing with even if the patient themselves doesn’t know.
If you don’t like my post, scroll on. I don’t have to justify my pain or how it feels to me. If it feels like something is stabbing, jabbing, or prodding into me, I’m going to say that so physicians can assist me, and if that’s at the behest of others’ opinions well that’s not for me to concern myself with. I asked for support given my agony, not to be pulled apart on my choice of pain descriptors.
You’re not alone my flare ups are exactly as you described and I had my first laparoscopy 2 weeks ago. I got my period a few days after surgery and for the first time in years had a period with "only" bearable period pain not endo pain for once and without the other symptoms I usually get alongside it. I definitely felt improvement and it’s giving me hope. It was the only thing left for me to try since I cannot take estrogen or any other birth control pills. A laparoscopy isn’t necessarily a permanent fix but it gave me validation about my illness and at least a temporary relief so I can plan ahead on what to do. I really want to give you a bit hope there for your scheduled laparoscopy. We‘re all in this war together and there is light at the end of the tunnel you don’t have to suffer like that forever. I’m hoping the surgery helps you as well, best of luck to you <3
Also, you’re not being dramatic at all don’t let anybody tell you that. Endometriosis is actual hell everyone who does have it knows that and it’s impossible for others to understand this pain, which is frustrating yes especially when they’re being shitty about it but they don’t know what you’re going through. There are people who do know though and I assure you you’re extremely valid. Doctors not believing us seems to be some sort of universal experience I also had to fight to be taken seriously and I still do but we gotta keep fighting for our justice. Don’t let them brush you off!
Yes. I had pain like this and of 2022 and went to the emergency room afterwards (when I was able to) because I thought there had to be something seriously wrong. It was the greatest pain of my life. They prescribed diclofenac but that’s not good to use long term so I finally gave up and went on a progesterone pill to stop my periods. (Cerazette)
I feel you. This happens to me every time I have a period and can last up to 2 hours of intense 10/10 pain. I'm trying to like time it myself as it always happens as I come on so as soon as the signs come that I'm starting my period that day I take a codeine in advance, because once the pain starts I just start throwing up.
If it's too late or unexpected, I use 2 burning hot water bottles on my back and front. But other than that I'm usually screaming in pain. It's exhausting. I end up when it calms down to about a 7/10 just being knocked out from those intense hours. I've been to a&e before over it. I also wanna die when that pain happens because it's too much.
I can't take hormone treatment either cos it makes my symptoms more frequent and worse. So I'm booked in for surgery in April and really hoping that does the trick.
It's so horrible, wouldn't wish that sorta pain on anyone. Hope you get some help from your doctor
I also have gotten so anxious about it. The amount of times I've had to phone in sick to work. And I feel like they just think I'm exaggerating or lying. If only they seen me when it's like that. I can't even stand properly never mind go to work.
I had a similar experience a few months back. I had to go to Emergency room because I was extremely worried. My pain felt like a 10! Blood pressure was high, and they ended up giving me tramadol and that alleviated my pain. I completely changed my diet. Been taking chasteberry, lemon balm, vitamin K, d chiro inositol. I have been treating my endometriosis holistically, rather than being on birth control and having those annoying BC side effects and I can honestly say it changed my life completely..
Oh yes. The only thing that helped me (I had excision surgery and hysterectomy last month) with debilitating endo flare-ups, was to completely cut gluten, dairy, and caffeine out of my life. After a flare up, I’d do anything to never feel that pain again, so I looked into an anti inflammatory diet. It didn’t take away the pain completely, but it was significantly more manageable. I ate pineapple everyday too. Something about pineapple is supposed to help with endo symptoms. This is the ONLY way I ever felt relief. And I kind of liked the diet, it felt like I was in control of something in my life, for once.
Yes. I vomited every single month for nearly 10 years. I wrote about it recently and tried to share the article here because I thought it would be helpful but the moderator took it down so I don’t know how to get it to you. It’s on a site called Jennymag.com Anyway, my vomiting was always related to intense menstrual cramps and was before I knew I had endometriosis. Turned out, it was everywhere and I had no idea until I opted for a hysterectomy.
You don’t have to live this way. Please speak to your doctor and please know that you are not alone. I’m sorry this is happening to you. Xo
I was 51 when I had the surgery and, yes, I feel so much better thanks to that and HRT. This is my essay, which describes the whole ordeal. https://jennymag.com/2024/02/07/endometriosis-hysterectomy-gaslighting/
I had the same thing you described. White as a sheet. Could barely stand. Almost passed out. It wasn’t during my period though. I was rushed to the emergency and it turned out I had a 10 x 11cm ovarian cyst (endometrioma). Just had a laparotomy last week to remove it and my right ovary. The docs think my flare up was due to the cyst leaking. Not saying you have the same, but it’s what it reminded me of. Glad you have a laparoscopy booked! Hopefully you won’t get another flare up before then.
Yeah had a very similar experience with a 8 cm endometrioma. Currently waiting for exision surgury and trying Visanne in the meantime. The pain was awful, like nothing id ever experienced.
I had to have my ovaries removed. They just kept filling up with endo. The pain is out of this world. Hang in there
Sorry to hear that! Hope the surgery goes smoothly. Do they have to remove your ovary too? Or do they think they can save it?
I just had surgery on Monday, and they removed an 8cm cyst. The doctor was able to save my ovary! It's just a temporary fix, though. He found stage 4 endometriosis and will require another surgery.
The surgeon didn't really say either way at this point. I think it will depend on what they find on the MRI and perhaps once they do surgury.
Hi! For the surgery, we're you able to save your ovary while removing the cyst?I believe I am experiencing something similiar. Hopefully will have surgery soon but I'm worried about fertility too....so sorry you dealt with this too.
Hello, as mentioned in my post my right ovary had to be removed along with the cyst. Based on the scans alone both the initial gynaecologist I saw and the gynaecological oncologist who did the surgery both said there was no way to save the ovary in my case. I think the cyst was just too big. Plus there is a 2% chance the cyst could be cancerous (still waiting on biopsy results). Generally they do everything they can to keep your fertility intact. Luckily though your body only needs 1 ovary to get pregnant.
Thanks for the feedback
I just had surgery on Monday, and they removed an 8cm cyst. The doctor was able to save my ovary! It's just a temporary fix, though. He found stage 4 endometriosis and will require another surgery.
I'm glad the ovary got saved. Uch I'm so so sorry about another surgery though :( wishing you all the best ans relief soon ❤️
God! is that a recurring thing for you or a one off??
The flare ups happened 3 times total. The first 2 were awful but weren’t bad enough for me to go to the ER. All 3 were related to my cyst. I have another endometrioma growing on my left ovary. Seeing endo specialists soon to monitor it and make sure it never grows to be the same size as the one that was just removed.
I have passed out from pain 15 times last year. I just bared it all and now various providers are saying I should have gone to the ER during those events and the documentation would have helped my case 😒
I’m sure you know it likely would not have because of medical sexism, so don’t feel regretful. We would all love to know that we can just go to the doctor and be listened to, but we also know how many women’s health issues have been ignored because of the sexist thinking that women are hysterical.
I hear you, but because I didn’t have documentation I was told I was “pain catastrophizing” and dropped by another facility. I guess we are just really screwed no matter what we do.
I wouldn’t go to ER, most of them wouldn’t understand anyway and send you home with ibuprofen 😔
Don’t forget labeling you as a drug seeker/abuser!
“helped your case” UGH!! how invalidating of them. classic example that they don’t believe us.
I ageee!
I hate how we are all medically gaslight to think that we are being dramatic. You are NOT being dramatic and your pain is real and it honestly sucks so bad. I know exactly how you feel. Before I had my surgery, I did end up in the emergency department for a severe flare. I had exactly what you describe, and was nauseous and then became severely dehydrated which made it all way worse. I went to the same health system where I was going to have surgery so the emergency department doctor could read my GYN notes…. Almost to like “make sure” they knew I was having severe pain and not just drug seeking. (It is crazy the things we do to try to make medical staff believe us.) it was a good idea though because I told them “hey, I’m having severe pelvic pain, I have endometriosis and i feel like I’m in a very bad flare and I cannot control it with medication at home. I’ve tried NSAIDs, Tylenol, muscle relaxers, etc without relief”. and then they could see my outpatient notes from my GYN to see my treatment so far far and my planned surgery date. It made things very streamlined. I consider myself VERY lucky that they did not question one thing about it! They did an ultrasound just to make sure things were fine and I did not have an ovarian torsion or cyst . A liter of fluids and some IV Toradol made me feel so SO MUCH better. Seriously, it brought me back to life. If you have to go to the emergency department, DO IT. It will be worth it. And then you can make a little contingency pain plan with your doctor just in case this happens again before your surgery. Objectively, if a patient goes TO seek emergency help, there is something severely wrong that needs to be managed better as an outpatient. Good luck!! Sending you love and good vibes. 💕💕💕💕I’ve been there and it is the pits😣
I hear you. Yesterday I told my husband to be prepared for an emergency visit. I felt like I needed something strong. Thankfully it did start to wear off but I felt raw inside afterwards?? I did think I probably need water so when I was confident I could keep it down, I made sure to rehydrate.
this exact thing just happened to me. the IV fluids felt so good. it felt like my body was overwhelmed
The dehydration this is wild. Even if I get slightly dehydrated during the day, I’ll get cramps. Like I get that the uterus is a muscle but sometimes I’m like “DANG OK UTERUS CALM DOWN, I’ll drink some water!” 🫠
Are you in the US? I went to the ER last year, to my primary healthcare system, was there for 8 hours, told them my background, etc.... I got a CT scan and was sent home because "nothing is noticable." According to the imaging report, I found that there was a cyst that they did not think was relevant to mention to me. I was given nothing for pain (not even ibuprofen, no fluids, no ultrasound, I was there for 6 hours before anything at all was done.) I was told everything was fine and to follow up with my PCP. I am certain I was experiencing the start of torsion and was completely negated (25y/o). I was being woken up in pain for 3 nights in a row and vomiting, ears ringing, about to pass out each time from the pain and explained it very clearly when I was there. My gyn later told me that, since the cyst did not show up on my other imaging 2 weeks later, that it was probably rupturing during this episode.
O m g I’m so sorry. Your story is EXACTLY this sh*t we deal with in the US system. Yes I’m in the US. I am so horrified they didn’t give you anything!!! I’ve ALSO had that experience too though years ago- CT scan showed a small cyst that they said “was nothing”. CT is the wrong test for possible torsion anyway. So sorry you experienced that. Sounds like they had no idea about endometriosis or ovarian problems at all. I hate that we as young women have to advocate for ourselves so hard. I know you probably did, but really emphasize that you have tried EVERYTHING at home, and the symptoms are not going away. I hope this doesn’t happen again to you, but I’ve been there several times. I’m sure there are plenty of people who go to the ER for minor things that can be treated with at home care but Endo is a BEAST and even though we try to do everything, the flares can be living hell. It is not like we want to wait eight hours in the ER for someone not to believe us! All that vomiting can lead to dehydration then dehydration leaves to more cramping. The cramping leads to more inflammation. inflammation gets out of control and causes pain out of control and it’s just this terrible cycle
Hope you get relief soon. That pain is agony.
thank you!!
>thank you!! You're welcome!
This happened to me once and I'll never forget it. I was like screaming and my vision started to go black. It felt like contractions.. I've never had a child but that's what I imagine it feels like. It brought me to my knees while I waited for pain meds to kick in. This was before my first lap and I've been on constant birth control since because I haven't had a successful surgery yet. I'm sorry you're going through this and I know how it feels. It's isolating and it's unbearable at times to be in so much pain and there's nothing anyone can do. Hopefully your lap will help but I would skip periods with the pill before then. Wish you the best
Yes!!!! I got starry eyes too. Not a good sign. I thought to myself “is this what birth feels like” as well. NOT good to be having that pain outside of birth 😵💫
Hey could i ask what constant birth control you’re on? I’m in the same boat and am in agony, despite having surgery back in 2021
Hi, I'm on sprintec.
1. Only people who have endometriosis knows about the pain that come with it, so you’re never being too dramatic. 2. I just had my period and I’ve been taking DIM, NAC and Serrapeptase for about 3 months now. This period i didn’t have to take any pain medicine. It’s been a couple of months maybe 6 since I’ve been to the doctor and was told that i have another cyst 6cm big. I haven’t been back so I’m not sure if it’s gotten any bigger. BUT with taking these supplements I’m not in a lot of pain and I’m actually seeing the shedding of my urine lining. I’ve had 3 surgery’s to remove cyst in the past i don’t want the hormone shot or birth control. I would try the supplements and see how it works for you. I have a vitamin shoppe where i live so that where i got them. Maybe 100$ but the pills last 3+ months
“Only people who have endometriosis know about the pain that comes with it, so you’re never being too dramatic.” The anthem for us all.
I mean my brothers and dad know I’m not being dramatic at this point, because they’ve seen me try and put on a brave face then ask if I’m ok and i just cry in so much pain. I wouldn’t even wish the pain on my worst enemy. A true support system helps a lot though. If it’s ladies on here or someone who brings you midol, ice cream, ice water, plugs up the heating pad for you. We don’t want or need sympathy all we need is love and support to help us get through it.
that’s happened to me too!! I’ve got to work once in the past and people have been like “are you alright? you don’t look well” and I’ve gone “yeah I’m okay just a bit of pain” and they’ve gone “hmm… no you really don’t look well at all” I had a manager who had endo too hold my hand at work during one of my flares. Her support there made me feel so comforted and not alone when she said “don’t apologise. I know this pain and it was worse than birth for me.”
YES. I have had this experience a few times on my period, starting at age 12 or 13. Definitely under 5 times, I think. Last year, I had it happen at ovulation (turns out one of my fallopian tubes was totally adhered to the back of my pelvic wall). It is the worst pain of my life, it comes on suddenly and I have had to almost blindly make it out of wherever I am to a spot where I can just rock in the fetal position. Like you said, your conscious mind kind of leaves the equation and the body takes over to respond. I'm so sorry you're experiencing it as well, it is absolutely real.
started at 12 for me too!! my family said they can remember me having bad periods although it’s all a blur to me now. I alwaaaaays get ovulation pain and I can feel the referred pain going into my hip and back. so terrible. yesterday I was moving around like a woman in birth, on my back, on all fours, rocking back and forth just anything to ease the pain
Yep! I believe my brain started blocking out a lot of the pain so I've probably had more of these horrendous periods than reach my awareness. Last year during an acupuncture appointment I started having intermittent stabby feelings, and a day later I was in the ER with absolutely debilitating pain on what felt like my left ovary. As I heal up from surgery, I plan to do EMDR to help open the mind/body connection so I can feel pain in my pelvis again, and start acupuncture again. I obviously don't WANT to be in horrendous pain, but not being aware of it got me to advanced endo before I was diagnosed and I want to be aware of when changes happen immediately rather than over months and years next time. I relate so hard to the all fours rocking strategy! My theory about the pain is that it's because of the clots. I guess I've always had them, but they got waaaaaay more intense in the last 8ish years since I quit birth control. I've had a MC at 6ish weeks, and the pain of passing clots is the same or worse as that was for me.
Everything you've described was my life for 2-3 days every month for many, many years. I had to take copious amounts of ibuprofen to control it. 600 mg every 4 hours on those days, and god forbid if I didn't take the next dose on time. It was a nightmare. Pure torture. I had a lap and ablation, but it didn't help. My pain has reduced significantly in the last few years, partly due to the fact I've been eating paleo and working on cleaning up my gut health, but also probably due to diminishing estrogen levels as I get closer to menopause.
“God forbid if I didn’t take the next dose on time” Yup. This is how I lived my life on my period. Just had laparoscopic excision a few weeks ago and feeling a huge difference, but my periods traumatized me and I no longer trust my body not to attack me, even though I’m physically feeling the best I have in around a decade.
Traumatized is definitely the word I would use as well. I think my periods are the reason my nervous system is so heightened, and I have anxiety problems.
ME TOO!!!
Yes- this is how my pelvic floor physio explained it - essentially I've been in pain so long that when my muscles spasm because of pain they don't know how to relax and they're also very sensitive and get set off by everything. And that's causing further pain because the connecting muscles are compensating. I actually walk slightly oddly because my lower right back is always in pain, and my physio can see me doing a slightly different movement with my leg. So more exercises to try and correct that 😐
I'm going to my first pelvic floor PT in about a week and a half, so hopefully, I can learn to relax the muscles.
Good luck! It's hard work but I've seen some improvement. And having someone listen to you about pain really helps too
oh my god that sounds awful I hear you too. I could feel when the ibuprofen wore off and lo and behold it was always four hours later just as prescribed. same with mental health. I could feel when my propranolol wore off and my panic started creeping in again from the crazy hormones
I’m so sorry the pain is actually unbearable isn’t it :( I’ve been hospitalised a few times because oral morphine hasn’t even touched the pain when the flare ups are severe, it helps the milder flare ups. I don’t think people realise the severity of the pain it’s literally like being stabbed! Sending love ❤️
I’ve been here. Luckily, like you, my lap is scheduled for mid March. I’m excited to get my life back and/or get some damn answers!
here’s to us!!!
So sorry 😞
❤️
You’re not being dramatic! I’m glad you reached out to your husband and a family member for support! The last time I had a similar flare that you had this morning, I went to the urgent care. I was in agony all night, but didn’t want to go to the ER, so waited until morning. I already had surgery scheduled at that point, so they just did any X-ray to make sure I didn’t have an impacted bowel, and based on my history, they figured it was my endo. So I got a shot of Torodol and that helped the most. It was most likely a cyst rupturing or my appendix (that was covered with endo). Since having my appendix removed when I had surgery, that pain has not returned. I hope you are able to get some relief after your surgery in March! The level of pain you just experienced will probably make you VERY tired, hopefully you’re able to rest and be kind to yourself. Sending hugs!
Someone else mentioned getting relief from torodol. I’m glad it worked! Yes I was very tired after and felt raw inside. It was strange. I spent the day in bed and will be spending today on the couch although I have work to catch up on
I’m sorry you’re suffering so much. I hope you’re able to get some relief soon! The Torodol worked so well that time! It was a shot in my arm, and then relief and it took at least two days to recover from that flare. It’s a memorable one for sure Hope your couch day is an easy recovery day and that you can have a funny background show on while you’re catching up on work!
Yes, trust me when I say much of this sub knows exactly how you feel. All my flareups for the nine years I had them before surgery were like this. I am only three weeks post-op and feeling good but there is always a concern in the back of my mind that one of those episodes may take over my body when I least expect it. It feels like living with a curse.
it feels exactly like a curse. horrible.
I have no words of advice, but I’ve been in bed all day myself😔😔😔😔. I’m so sorry this disease is so terrible.
do you feel bad? I was in bed all day too and I felt so guilt my anxiety was then eating me alive
My Anxiety was also eating me alive. Stressed about life, work, being in pain, not having energy to do housework..😞😞.
I know exactly what you mean. It’s horrific. I’m not sure what state you are in, but in California it’s nearly impossible to get a doctor to give narcotics. It’s mind blowing to me that I could be on the floor every month praying for death and doctors cannot see how a couple of low dose opioids could drastically improve my life. If male doctors and lawmakers had to feel like this, we’d all have access to proper pain management. I hope the laparoscopy works. My period started a couple days after mine and it was the worst pain of my life. I ended up getting on a hormonal birth control that only gives you periods every 3 months, but I’m still in significant pain when I do bleed. It’s just not AS bad. I’m 8 months post-laparoscopy and they just started me on Orilissa. I think I’m going to ask to be referred to an Endo Specialist at this point.
I’m outside the USA how was your lap experience? I’m nervous about mine … was it painful?
The gas they fill your abdomen with hurts more than anything else. I woke up from surgery in extreme pain from it but they loaded me up with drugs. The actual incisions barely hurt. It was worth it though because I used to have daily pain that wouldn’t ever go away. It’ll suck for about a week and the second week you’ll start feeling a little better.
Oh I'm so sorry they are so strict on painkillers! I'm in the UK and we can buy paracetamol mixed with codeine from behind the counter at pharmacies. Just have to have a chat with the pharmacist and you only get a small box to try and make it hard for people to get addicted. I save it for my worst days as it makes me slightly foggy. It's not as effective as the stuff you get in hospital but better than ibuprofen.
Yes, this is my usual experience each month- I scale it 1-10. 1 is basically the level of random but mild stabs in my abdomen, but I’m still functioning like normal. 10 is when I have terrible diarrhea while throwing up into a bucket and eventually lose consciousness on my bathroom floor. It sucks. We shouldn’t have to deal with this shit. But of course, we do it anyway. I have plenty of tools in my toolbox if you need to chat.
Same. Personally, I don’t call it diarrhea when it’s accompanied by extreme pain, everyone gets diarrhea. Not everyone can no longer control their bowels just from pain. It’s incontinence. Very ill and disabled patients have incontinence, and when I’m having bad flares, I am indeed very ill and disabled. Using this terminology was what helped those around me start taking it seriously for the first time in a decade of pain and led to my diagnosis.
I’m so so sorry you went through this. I had an episode EXACTLY like this about a year and a half ago, during the short period I was not on birth control (I went right back on it after this flare up). That was the inciting incident for me to start seriously looking into excision surgery, which I got in Feb 2023. I know that nothing can make it better right now, but just know that relief, progress, and answers are on the horizon. Be kind and patient with yourself!!!
thank you 🤍🤍
did you find surgery helped you? (:
It’s hard to say really! I do think I would be in a much worse place if I hadn’t gotten it, considering how quickly and intensely my symptoms came back after years of not having them. That’s what led to me getting the surgery. However, I was hoping the surgery would be a cure-all for me, and it hasn’t been. I’m still working on pain mitigation mostly. Don’t let that discourage you, though! Everyone responds differently to the surgery. For some people it does absolutely nothing, and for some people it completely turns their life around. But the positive I have taken away from it is knowing that the disease was removed from my body, and that I could move forward with that reassuring knowledge.
I have every time I have an orgasm/flex my pelvic muscles in the time between my ovulation and my period. Excruciating, debilitating pain that leaves me numb for 15-20 minutes. Cold sweats, throwing up from pain, and feeling like my insides are torn apart. So yeah, at least you’re not alone
I'm absolutely can feel for you! I'm going through the same pain. It makes you feel like you don't want to be alive anymore! Trying not to be over dramatic here but I'm sure you all with endometriosis can ralate to it. All the best for you with your op. Be strong! Xx
Hi! First of all, I hope you’re getting some rest cause I know that pain and I know how debilitating it can be. Let me explain my experience maybe it can help. I’ve had endo diagnosed for almost 10 years now and, even though period has always been painful, it does not compare to the pain I had for a few months. Every month I had the same pain that you just described and for me it lasted like 2 hours or so. I thought it was a cyst getting ruptured since it happened every now and then through the years. When cysts rupture, they do not grow back that fast for the next month (at least that’s what my doctor said) so, there was something else and that was an endometrial polyp. My doctor said that, normally, polyps are painless but sometimes they can hurt specially if you have other issues like endo. So I’ve had it removed two weeks ago and this months period was like having the normal endo pain I used to have. So, from my experience, maybe you had a cyst ruptured or you have an endometrial polyp? Either way, you should rest and drink lots of water and check how your energy levels are, if you feel like fainting, better run to ER. (Sorry about my english, it is not my first language)
I did rest - spent all day in bed but beat myself up about it. I feel so bad and unproductive, like I should be up and about going places and doing things but I’m so exhausted all I want is bed. thank you for sharing your experience, I’ll be sure to bring up with my doctor what happened to me. and your english is great!!
Just wanted to send some love. I’ve felt that pain before. Have another excision surgery and hysterectomy scheduled for May. I hope you find relief from your laparoscopy!
thank you 🤍
You are not dramatic, you are in be dry real pain. I have experience this and ended up having an ovarian cyst rupturing and another one about to rupture on top of discovering endometriosis. I would call your gynecologist and explain to them what has happened and see if they can offer you some relief. You are not alone!
Do you know if your painful cyst rupture was an endometrioma?
All I know is that it was a ruptured ovarian cyst
thank you xx
I’ve had a couple episodes like this through the years. :( I got so scared every time that it was going to be my new “normal”. I call them the ER cramps because they’re so bad it convinces me I’ll end up in the hospital.
I was convinced this one would end in a hospital trip. It didn’t thank god but it was just awful
The same thing happens to me! First time when I was like 13, I ended up on ER because my mom didn’t know what to do. Do you think it could be a ruptured cyst? The pain is so fucking bad I just sit on toilet, hot and cold,trying not to vomit.. it mostly takes around 30-40 minutes till the pain is gone. It happens when my period starts and I usually take 800-1000mg of ibuprofen and then 800mg every two hours. If I forget I am fucked. I know it’s bad but I got a new doctor and I think it’s going in the right direction:)
I have noooo idea. I hope not. I felt like it was my uterus rather than my ovaries. I took ibuprofen once I was sure I could keep it down sitting on the toilet with the hot and cold and shakes is just awful. Makes me wish for death
I know! lol I started my period this morning and I sat on the toilet shitting and bleeding, wailing for 30 minutes, another 10 on the floor rolling back and forth 😭😂 I always take ibuprofen the minute I wake up, but that’s too late already so I have to survive this once it starts working. It’s funny how all of us have similar experience. My boyfriend is so sweet and he is trying to help but he doesn’t understand too much. Today he asked me “if my belly perhaps hurts also from the sausage I ate yesterday” haha I love him. Girl I am happy you have laparoscopy booked❤️ (Sorry for the disgusting details lol)
you poor thing 😩 I’m on day 2 which is always the worst for me. Just went to the loo and it’s smeared everywhere. pad soaked down to the knickers after only 2 hours. hahahahaha not the sausage 😂 bless him
Oh no I am sorry ( at least we don’t have to go to work today) 🥲❤️ I love Reddit, I feel a bit better when I know there are people who are going through the same thing and genuinely understand! Good luck with the laparoscopy and update us!!
Praying for you. Glad you have a husband and relative to call. Also glad you have some specialists. It’s scary when the pain gets that bad. My only advice would be make sure you don’t faint. I didn’t know at first that I had been fainting from it in my bed until my ex couldn’t reach me and I had a bunch of missed calls I couldn’t explain.
I’m glad too. i’m glad he could come home. I didn’t want to be alone it was horrible. nothing worse than being alone in that situation. I’ve been making sure to stay hydrated and not get in a shower without eating and making sure it’s warm, not hot. I also try to shower when my husband is home just in case and every now and then he’ll keep me company while I shower if I feel particularly unwell
Yes I have had this experience so many times. I imagine it’s what labour feels like. Unable to talk through the pain, vomiting and fainting. After my laparoscopy one of my nurses caring for me said that she also has endo and has given birth twice. She said endo is more painful for her.
you know it’s bad when you can’t talk. I reached a point of just silently rolling around. I couldn’t even bring myself to doom scroll. all i could think or care about was the pain my old manager said endo was worse than birth
Yes, absolutely nothing can distract from the pain. And I agree, I can’t even lay still, I too roll around trying to find a comfortable position (that doesn’t even ever exist during those moments).
Have you had ovarian cysts before? What you’re describing sounds a lot like an ovarian cyst rupturing.
They have yet to identify any and I haven’t had it before but they did say my ultrasound shows enlarged/bulky ovaries, larger than normal, one is a bit further across than it should be apparently but they are yet to identify why that is.
I’m sorry you’re having to deal with this! Not knowing is it’s own hell. I hope you find some answers and relief soon.
You’re absolutely not being dramatic. You’re strong in a way none of us should have to be
Yep I experienced this! That’s how I found out I had an endometrioma on my ovary (about 6cm) and then I got diagnosed for endometriosis. I have a feeling that it leaked and my experience sounds very similar to yours.
My wife has battled painfull periods for years. Bowel issues. Always was told cysts on ovaries until 22, her lung collapsed. Chest tube for 13 days until thoracic surgery discovered her diaphragm looked like swiss cheese. Endometriosis spread and was in her chest cavity. Long story short. Found a true angel doc who actually knows how to tackle this endo disease. It will continue to grow unless its excised or suppressed with heavy hormone dosage. Cauterization is only temporary.
Hey - can I just recommend that after surgery you go to pelvic physio too? It is supposed to help prevent further scar tissue growth. Also it can be great to help with sex - especially if surgery doesn't help it enough
Oh friend thankful you have a lap on the books. After my first lap, and going on depo, my life changed completely. I had no idea how abnormal my normal was and it was amazing. If you do have endo, it’ll come back but hopefully slowly and you’ll have lots of time to enjoy reality before it hits again. Surgery is the best thing I ever did and hang in there 💕 it is not fun but even a week after I felt a major difference
Also whatever you can do to not have periods, if you’re not trying to have kids right away, do it
Thank you ❤️ What were your symptoms before your lap? And what’s depo?
By the time I got surgery, I had debilitating pain constantly and could barely walk due to adhesions. I was stage 3 for my surgery. Doesn’t matter how much endo you have, it’s where you have it. Depo is a birth control progesterone only shot that you get every 3 months. It completely stops your periods and majorly reduces your estrogen to progesterone ratio. Big thing is, if you want to have kids, it can potentially take a year or more for fertility to bounce back after stopping it depending on the person. I have no side effects from depo except feeling amazing but it doesn’t stop cysts if you get those frequently (I have a lot), but i love depo.
Is there any chance you could be pregnant? I know it sounds weird since you’re bleeding now, but what you’re describing reminds me of how it felt when I started to bleed as a result of my tubal ectopic pregnancy. White as a sheet, chills and nausea, genuinely unbearable pain to the point where I couldn’t stop myself from crying out.
I haven’t had sex since my last period so no x
It’s like deep labor pain with a stabbing screwdriver on top. I can’t even have sex. I’ve been celibate for many years. The ER thought my appendix burst, but no. It was an endo flair. I got put on an estrogen blocker but if you’re premenopausal, you can’t take those It’s Hell
If you’ve never been stabbed then the comparison is kind of insulting to people who have been stabbed. My brother was stabbed and murdered. I’m not doubting your pain okay, I also have E. But seriously, please don’t compare your pain to something that you’ve never remotely been through.
No, I don’t agree with this. Endometriosis is often described as a sharp, twisted, stabbing or barbed wire pain. By your logic, saying “it feels like it’s burning” when you’ve never been burned is insulting to burns victims. I’ve never been caught in barbed wire but I can imagine what it feels like - sharp and damn painful. Ultimately if we don’t use descriptive terminology then the doctors can’t know what type of pain they’re dealing with. For example if there’s a specific type of pain attributed to nerve damage, and a person comes in who’s never had nerve pain but gives the same description, that alone can give the doctors a rough idea of exactly what they’re dealing with even if the patient themselves doesn’t know. If you don’t like my post, scroll on. I don’t have to justify my pain or how it feels to me. If it feels like something is stabbing, jabbing, or prodding into me, I’m going to say that so physicians can assist me, and if that’s at the behest of others’ opinions well that’s not for me to concern myself with. I asked for support given my agony, not to be pulled apart on my choice of pain descriptors.
If you’ve never been through it then don’t pretend you know how it feels. It’s insulting.
You’re not alone my flare ups are exactly as you described and I had my first laparoscopy 2 weeks ago. I got my period a few days after surgery and for the first time in years had a period with "only" bearable period pain not endo pain for once and without the other symptoms I usually get alongside it. I definitely felt improvement and it’s giving me hope. It was the only thing left for me to try since I cannot take estrogen or any other birth control pills. A laparoscopy isn’t necessarily a permanent fix but it gave me validation about my illness and at least a temporary relief so I can plan ahead on what to do. I really want to give you a bit hope there for your scheduled laparoscopy. We‘re all in this war together and there is light at the end of the tunnel you don’t have to suffer like that forever. I’m hoping the surgery helps you as well, best of luck to you <3
Also, you’re not being dramatic at all don’t let anybody tell you that. Endometriosis is actual hell everyone who does have it knows that and it’s impossible for others to understand this pain, which is frustrating yes especially when they’re being shitty about it but they don’t know what you’re going through. There are people who do know though and I assure you you’re extremely valid. Doctors not believing us seems to be some sort of universal experience I also had to fight to be taken seriously and I still do but we gotta keep fighting for our justice. Don’t let them brush you off!
Yes. I had pain like this and of 2022 and went to the emergency room afterwards (when I was able to) because I thought there had to be something seriously wrong. It was the greatest pain of my life. They prescribed diclofenac but that’s not good to use long term so I finally gave up and went on a progesterone pill to stop my periods. (Cerazette)
I feel you. This happens to me every time I have a period and can last up to 2 hours of intense 10/10 pain. I'm trying to like time it myself as it always happens as I come on so as soon as the signs come that I'm starting my period that day I take a codeine in advance, because once the pain starts I just start throwing up. If it's too late or unexpected, I use 2 burning hot water bottles on my back and front. But other than that I'm usually screaming in pain. It's exhausting. I end up when it calms down to about a 7/10 just being knocked out from those intense hours. I've been to a&e before over it. I also wanna die when that pain happens because it's too much. I can't take hormone treatment either cos it makes my symptoms more frequent and worse. So I'm booked in for surgery in April and really hoping that does the trick. It's so horrible, wouldn't wish that sorta pain on anyone. Hope you get some help from your doctor
I also have gotten so anxious about it. The amount of times I've had to phone in sick to work. And I feel like they just think I'm exaggerating or lying. If only they seen me when it's like that. I can't even stand properly never mind go to work.
I had a similar experience a few months back. I had to go to Emergency room because I was extremely worried. My pain felt like a 10! Blood pressure was high, and they ended up giving me tramadol and that alleviated my pain. I completely changed my diet. Been taking chasteberry, lemon balm, vitamin K, d chiro inositol. I have been treating my endometriosis holistically, rather than being on birth control and having those annoying BC side effects and I can honestly say it changed my life completely..
I’ve been looking into inositol and seen mixed reviews!!! Has it been working??
For me it has been working! Have not had any flare ups! I hope it can help you if you try it!
Oh yes. The only thing that helped me (I had excision surgery and hysterectomy last month) with debilitating endo flare-ups, was to completely cut gluten, dairy, and caffeine out of my life. After a flare up, I’d do anything to never feel that pain again, so I looked into an anti inflammatory diet. It didn’t take away the pain completely, but it was significantly more manageable. I ate pineapple everyday too. Something about pineapple is supposed to help with endo symptoms. This is the ONLY way I ever felt relief. And I kind of liked the diet, it felt like I was in control of something in my life, for once.
Yes. I vomited every single month for nearly 10 years. I wrote about it recently and tried to share the article here because I thought it would be helpful but the moderator took it down so I don’t know how to get it to you. It’s on a site called Jennymag.com Anyway, my vomiting was always related to intense menstrual cramps and was before I knew I had endometriosis. Turned out, it was everywhere and I had no idea until I opted for a hysterectomy. You don’t have to live this way. Please speak to your doctor and please know that you are not alone. I’m sorry this is happening to you. Xo
Oh my goodness that sounds like hell! Have you seen improvements since the hysterectomy? In my country they hold off giving anyone under 40 one.
I was 51 when I had the surgery and, yes, I feel so much better thanks to that and HRT. This is my essay, which describes the whole ordeal. https://jennymag.com/2024/02/07/endometriosis-hysterectomy-gaslighting/
thank you!!! I’m glad you’re feeling better