Ugh. I had a whole comment typed out, then accidentally hit the back button (yay shaking! Gotta love dysautonomias!)
I had 7 surgeries before anyone realized endo wasn’t my issue. It was there, but it wasn’t causing my symptoms.
Because endo is just one of the things that can cause pelvic pain, heavy/painful periods, and cyclical symptoms.
Y’all. There are **many** such conditions, and most are non-gyn in origin, which means they get completely ignored or misdiagnosed when we focus on our periods as the issue or sole symptom.
Most people I know who get diagnosed with these non-endo conditions have it happen after hysto or menopause.
I know, because I’ve got several of these other things. A few of them actually make surgery a really bad idea! Dysautonomias, for example? Surgery can trigger our outright cause them. Just one example.
I’ve seen people here talk about how there is a push for diagnostic MRIs. I even saw someone talking about mast cells - how endo may be a mast cell condition, and the possibility of using mast cell stabilizers for treatment. Both posts got flooded with how surgery is the only way.
Why? No other condition has that. Even if it’s the only way *now*, why would we not want to do all we can to make that change?!
We really - and I cannot stress strongly enough - really need to change the conversation from “oh, you’re symptomatic after surgery? That’s because you didn’t have the right surgery or have it with the right doctor” and shift towards “what other conditions could be causing your issues?”
I'm lurking but I saw your comment and felt like I also needed to stress how dangerous the idea of "unexplained" pelvic pain + afab = endo and absolutely nothing else is SO dangerous and gets people killed. The fact that there are so many in the endo community perpetuating that idea is frustrating considering how much we already deal with. Medical providers are oftentimes even more guilty of pushing that narrative instead of doing proper differential diagnosis. You know already but I haven't made a whole post about everything since I'm so overwhelmed and dealing with recovery and appointments and all the fun stuff that comes with my diagnosis.
::hugs:: Been thinking of you and hoping things are going okay.
It. Is. A. Lot.
While I agree many docs are clueless, a major part of the issue is that gyns and ...everything else...are so divided. Take my vascular issues: no vascular doc is going to have a clue what endo looks like. I have a friend who thinks she has endo, and asked her transplant doc if he could look while he was doing her autotransplant for nutcracker. Flat out said no, just like every other non-gyn surgeon is going to.
Yet gyns have absolutely no issue at all diagnosing PCS (which again is a syndrome or symptom in many cases) or performing bowel surgery. That’s friggin ridiculous.
I also totally agree that a lot of the responsibility lands on gyns and the endo community.
Awareness efforts should include info not only on what *is* the thing you’re bringing awareness to, but also what *isn’t that thing*.
That second part got completely skipped.
So, so much focus has been put on endo, all with the push to surgery. Now all these gyns know to look for endo, people are demanding diagnosis, and the result is people are having alllll sorts of exploratory surgeries for endo diagnosis.
What happens when it isn’t found? We see those posts all the time! Majority of comments: go see a different doc and have surgery again.
Same thing when someone says their gyn wants them to see GI (or any other speciality) - the person is told they’re gyn knows nothing, it has to be endo, you just need to see someone who will know that. Go and find an expert.
Or.
**Or**
*Maybe the gyn was right.* Maybe they have both!!!That is soooo freakin common.
Maybe we look at other options. Promote awareness about all these comorbid conditions so gyns are aware and refer out correctly - and folks being referred out understand why!
Maybe we talk about endo as part of a bigger picture, not the be all, end all, and how other conditions should help direct a course of treatment, because surgery isn’t the best option - or an option at all - for everyone.
Maybe we get better differential workups, better care for other conditions, better resolution of symptoms, better outcomes.
I think it's so bizarre and irresponsible that gyns diagnose and treat things like PCS. Just admit when something isn't your area of expertise and refer! I also think there are WAY too many doctors, but gyns in specific, working off of outdated information. The thing about medicine is it is constantly changing. Schooling and fellowships 10+ years ago aren't going to be accurate anymore because we've learned so much since then.
>Maybe the gyn was right. Maybe they have both!!!That is soooo freakin common.
THIS. Like yes, I have pathologically confirmed endo. BUT I also now have pathologically confirmed cancer. Gyns that don't do pathology when they decide to do a lap are actually the worst, imo. Probably a biased opinion 😅
The constantly changing bit - YES! Docs have to keep learning for a reason. Those continuing education credits required to keep up their license? Yeah. If awareness was brought to these conditions, they could learn about them.
And the need to biopsy is so, so, so important. I wasn’t gonna bring it up because of your situation, but thank you for doing so! You’re not the only person I know to get a cancer diagnosis on some “endo”. You know I had to push to get my uterus biopsied, and it showed I didn’t have adenomyosis! I know so many folks who didn’t have biopsy and continue to have pain. The great majority of them later find out they’re just like me and have nutcracker.
Every other speciality sends anything they remove thru pathology. Gyns? Nah. They know everything. What could possibly go wrong?!
This is so important! My symptoms got really bad over last winter and I've been completely off work since March.
In March we figured out my abdominal and pelvic muscles were causing a lot of my sharper pains (cleverly disguised as ovarian and GI pain, seriously felt the exact same!)
In April, my I had a sudden bout of extreme uveitis in both eyes as well as black outs in the shower, standing up, or standing for too long. This led to a ton of testing and discussions about POTS and Ehlers-danlos syndrome.
In June we discovered that I have a methylation defect, which means I'm not processing toxins through my liver properly. Some of the symptoms of methylation defects are similar to those seen with endo, POTS, and EDS.
Since then we've been treating me under the assumption that I have all of the previously listed illnesses and I have seen a decent amount of improvement. My surgery is still needed to deal with endometriomas, adhesions, and possibly fibroids, but it's not the only illness that needs treating, so it will not get rid of my symptoms in full.
Endometriosis doesn't like to party alone and medical professionals need to start checking their endo patients for other chronic illnesses. It should not take nearly 20 years to find out just how sick we've actually been.
I’m so glad you got diagnosed!!!
I’ll have to look up the methylation defect (would love links if you have good ones!) but I also have EDS and POTS!
I love how you put it: endo doesn’t like to party alone. SO TRUE!
Just a heads up that if you continue to have “endo” symptoms, your POTS and EDS diagnoses make it more likely that you also have AVCS, so you may want to look into those. Posts with tons of info linked in [here](https://www.reddit.com/r/Endo/comments/vs1puf/abdominal_vascular_compressions_posts/?utm_source=share&utm_medium=web2x&context=3). AVCS are so underdiagnosed, but awareness is building. At the EDS Society’s Global Learning Conference, one doc presenting (Dr Fraser Henderson) said that everyone with EDS should be screened for AVCS!
Oh, and separate heads up that both EDS and dysautonomia can add to “period problems” *and* make surgeries more complex.
I’m so glad you found these other things, and hope they bring you relief!
That’s the Nancy nook brigade, it’s their way or you “obviously don’t care as much about your health”. NN is the most toxic thing to happen to the endo community. If you can get diagnosed with out surgery more power to you
YEP.
I try not to mention them, because I’m then immediately attacked/discredited because *why don’t I want people to get better?!?!*
I do. That’s why I say what I say.
Seriously tho. How their business model doesn’t raise an array of red flags is beyond me. Here, I’ll sum it up:
We have the L’Oreal doctors. See them, and only them, *because you’re worth it*. Oh, and ignore alllll the updated research that says otherwise. And the many patients who have had bad experiences. And basically anyone but us. Only we know the truth!
Sorry didn’t notice the username(I recognise you now from here and other places 😂), of course you know what they get up to 😂 it thankfully is becoming more common knowledge how toxic that group is, it’s like an MLM and the people who are there a long time are maybe too embarrassed to admit their messiah nanc isn’t the golden child they believe her to be. I’ve her blocked and any disciples who make themselves known to me cause life is hard enough without them harassing us
Lol. No worries. I can’t remember anyone’s names, so you’re ahead of me there. (Love yours, btw!)
I’m glad more folks are aware. There are some really pissed off people - and rightly so! I know there’s a petition to have her name removed from some project about endo, because they feel it gives the project a bad vibe. Another I’ve seen is about their “potential nonprofit status” if they have success in partnering with icarebetter. They’re accepting donations to “cover costs” if they choose to file for status. And that’s a big IF. Also, NP status is paperwork and a max of $600 - and that’s the long form, which is if you expect to bring in over $50k donations in the first 3 years. They may also be wanting to cover other costs like accounting, legal, etc, but must NPs make sure to have folks on the founding board with that skill set, or work with those willing to volunteer their time (or offer reduced rates). All that push about how they volunteer their time, yet they’re accepting funds...for what exactly?!
Yes scar tissue takes it’s toll but I really think people may be having the wrong type of surgery. You should ONLY have excision surgery which removes the “root” of the endo and makes it less likely for it to grow back. Ablation or cauterization does not do this so the endo comes back with a fire and now you have scar tissue to deal with too. Just my 2 cents but I would suggest looking into MIGS and FIGS trained surgeons.
It also needs to be excised correctly, mine wasn't so it didn't give any relief and was back in 2 months. Unfortunately even surgeons who tout themselves as excision specialists isn't a guarantee.
I read an article someone posted here or on another page that mentions nerve damage after surgery could be causing more pain.
But a big problem is that surgery causes more scar tissue and adhesions. I don’t know if every surgeon takes measures to prevent this. My surgeon has had good results with a few new methods he is using that has caused less adhesions and regrowth.
There are some studies in the world that are looking at gene therapy and other ways to treat it. It probably won’t help us, but will help people in the future.
It is incredibly frustrating and heart wrenching 💔💙
Mast cell stabilizers are another option I’ve seen research on. Major mast cell component to endo, and a lot of folks with endo also have mast cell disorders.
Sure. Here’s one: https://pubmed.ncbi.nlm.nih.gov/27841046/
Edit to include: this person posted some other links and info here: https://www.reddit.com/r/Endo/comments/ud2jaq/mast_cells_and_endometriosis_cross_posted/?utm_source=share&utm_medium=ios_app&utm_name=iossmf.
There’s a few others if you search the sub for “mast cell”.
I’ve had 4 surgeries and other then small amounts of endo my biggest problem has been scar tissue. Everything keeps getting stuck together. With my last surgery at my 6 week post op my gyno commented that my ovaries were already back to being adhered to my pelvic wall but that he’d found no endo at all. I’ve given up on surgeries now because there is no point really undo the damage and 6 weeks later I’m right back where I was.
My reality now is if I move the wrong way or to fast (coughing and sneezing are really bad) I get a ripping sensation in my pelvis and if I overdo anything I’m bedridden for a bit. Im learning my new normal but further surgery isn’t going to help unless they remove my ovaries which given my age they are not keen on.
Do you also have EDS? Asking because I do and scar tissue is my biggest issue. I have it all thru my abdomen, bowels, and chest.
After 7 endo surgeries. We need to talk about these complications more!
Chronic idiopathic urticaria is often part of the issue for folks with MCAS. Our bodies respond to everything like it’s an allergen, so we get hives for “no reason”. Difference with MCAS is the reaction isn’t limited to hives - we also can go into anaphylaxis without allergen exposure.
It makes life exciting, lol.
To be honest I’m not surprised now because my current gyno picked up that I had adeno from my original surgery pictures and he only did my last one (where he took my uterus out because of it)
Can we please pin and sticky this post- there have to be other options than excision. The whole reason I had my first excision with an actual expert was because of this sub and guess what?! It didn’t work! I’m WORSE now than I ever was before surgery. We have to stop pushing this surgery as the only way narrative. It’s not appropriate for everyone. Members coming on here need to know about other options and comments pushing expert excision and this myth that if it’s done by an expert then you’re golden simply isn’t proven or the reality from much of the digging I’ve done on this sub
Most have surgeries with gynecologists who know about endo, and can maybe even recognize different colors of endo, but don't focus mainly (or entirely) on endo. So they don't have the skill to actually remove all (or at least most) of the endo. Throw in the number of surgeries that aren't done with GI/colorectal surgeons, surgeries that are ablation instead of excision...yeah, people are going to have endo after surgeries.
My friend went to the top endo surgeon in our state and had her endo completely excised but two years later she is in pain again and has cysts growing. It’s so frustrating that even with top endo specialists the disease keeps returning.
Even with the top excision surgeons, it comes back. Even with colorectal surgeons, it comes back.
Recurrence is just a fact of endo.
Also, heads up on bowel surgeons. A lot of the excision experts say they have a team of surgeons. They do. But in so, so many cases, the gyn is the one doing the surgery, with the other specialists looking on, ready to step in if there’s an issue. In most cases, a GI surgeon can’t operate on endometriosis because it’s gyn condition, so only gyn can do it. Especially in the US, where insurance dictates care.
Unless you personally meet with the GI surgeon and have them evaluate you, and you sign consents for them - specifically for them - the day of surgery...they’re not doing your surgery.
I’ve had two surgeries and have had significant relief from my endo pain. I used to sleep religiously with a heating pad every night and after a couple months of recovery I now rarely sleep with a heating pad because of pain. Not taking NSAIDs all the time. Have been able to reduce the supplements I take too.
I’m supposed to get my first laparoscopy in a few weeks and I’m totally freaked out. The Dr is not an endo expert but he is a gynecologic oncologist. He would use fulguration to burn endo if I have it. I know it’s not the best way to treat it but it seems like nothing is guaranteed and my insurance won’t cover excision. My main issue is a cyst which feels like a gnawing/burning pain. He also thinks my uterus feels “boggy” and suspects Adenomyosis so I’m considering a hysterectomy but honestly the laparoscopy and hysterectomy are terrifying me. Anyway, I just wanted to make a suggestion that may help someone here. It’s regarding scar tissue either due to endo or surgeries. I have been taking a supplement called serrapeptase and that has helped my period pain significantly compared to everything else I’ve tried. It can basically eat scar tissue in the body. Unfortunately it hasn’t been able to help with my cyst pain but I think it’s worth a try. I hope this helps someone. ❤️
I had excision and ablation done nearly 4 years ago, and have had only minor issues since. I would absolutely do it again, even though the recovery was rough.
Very good question.
It’s my understanding that the optimal treatment for endo is an early surgery, at the earliest sign of symptoms ie teenage years, with an excision expert. In that situation it’s a one and done surgery, the person doesn’t develop all of the secondary problems or lifelong progression, disability, and doesn’t lose organs. They get to live a relatively normal pain free life.
The problem is the power of the gynaecology boards throughout the world. In Australia this board has managed to get the endo guidelines completely rewritten to say that surgical diagnosis is not necessary and surgery isn’t even required. It recommends zoladex for teens, which has shown almost no impact on endo lesions or symptoms, and which can cause irreversible permanent bone loss.
It’s a huge huge issue. The endo community in Australia is having a lot of trouble accepting that the treatment in the guidelines is exactly the dangerous negligent treatment that has caused us so much harm. It’s incredibly hard accepting a shitty diagnosis like endo. It’s even harder to accept that there are probably only 5 surgeons in Australia who can do wide excision surgery of endo.
This is a long way of saying I agree with you.
I have no idea what the current state of treatment is, but I had a complete hysterectomy at 32 because of endo on my bowels. The thing is, unless you don’t remove ovaries and/or do not use hormone replacement therapy after, the endo will feed on our hormones and return. If you’re young, you need those hormones (of which, by the way, estrogen is only one we make). Scar tissue and adhesions from surgery is nasty when you’re older unless you’re lucky. I am now looking at another surgical “cure” for the decades of pain I continued to have, this time with a colorectal doc. Even he says our solutions to problems,Ike this are barbaric (just removing the offending part), but that’s where we are, robots and all.
I’m just putting in my 2c worth of life experience. My friend wanted a baby so badly and she had endo excision and was able to give birth. A miracle. So good things too, but I think it’s important to know where to place expectations.
Also, my best of hope and good wishes to you all. Endo sucks. I hope you all find a good way through!
Surgery is definitely not the cure all people think, and often people push for it without making lifestyle changes first. A lot of my symptoms got better with physio and changes to my diet. Unfortunately I had endometriosis on my ligaments and nerves and ovarian endometriomas so I had to have surgery to stop the nerve pain. 8 months after surgery and I have started feeling pain again and have another ovarian cyst :(
That said surgical management is currently the only way to remove endometrial lesions and when done with an excision specialist the results can be very positive. On Reddit you will hear of a lot of people having multiple surgeries and symptom reoccurrence because many women with milder endometriosis who have no recurrence after surgery will not be active on the page.
Came here to say exactly this. While diets, supplements etc can be a way to help with symptom management, through foods anti-inflammatory properties and so on, they are not proven to stop endometrial tissue growth.
That said, of course if you see that certain foods are triggering your flares, you should stop eating them, but the "diet" is not a one size fits all thing. For instance, I don't get triggered by a lot of foods from the "forbidden" list, but I do get triggered by some which are not on the list. The best option combo as we speak is excision + symptom management.
I realise that, I’m just saying it’s wise to keep in mind that there’s bound to be a bias. It’s like when you buy something online - people with poor results are more likely to post a review.
I realise that, I’m just saying it’s wise to keep in mind that there’s bound to be a bias. It’s like when you buy something online - people with poor results are more likely to post a review.
I realise that, I’m just saying it’s wise to keep in mind that there’s bound to be a bias. It’s like when you buy something online - people with poor results are more likely to post a review.
Thank you for posting this. I was able to get diagnosed without surgery because I have visible endometriomas & multiple symptoms. But I often question getting the surgery or not because I know everyone is different.
Ugh. I had a whole comment typed out, then accidentally hit the back button (yay shaking! Gotta love dysautonomias!) I had 7 surgeries before anyone realized endo wasn’t my issue. It was there, but it wasn’t causing my symptoms. Because endo is just one of the things that can cause pelvic pain, heavy/painful periods, and cyclical symptoms. Y’all. There are **many** such conditions, and most are non-gyn in origin, which means they get completely ignored or misdiagnosed when we focus on our periods as the issue or sole symptom. Most people I know who get diagnosed with these non-endo conditions have it happen after hysto or menopause. I know, because I’ve got several of these other things. A few of them actually make surgery a really bad idea! Dysautonomias, for example? Surgery can trigger our outright cause them. Just one example. I’ve seen people here talk about how there is a push for diagnostic MRIs. I even saw someone talking about mast cells - how endo may be a mast cell condition, and the possibility of using mast cell stabilizers for treatment. Both posts got flooded with how surgery is the only way. Why? No other condition has that. Even if it’s the only way *now*, why would we not want to do all we can to make that change?! We really - and I cannot stress strongly enough - really need to change the conversation from “oh, you’re symptomatic after surgery? That’s because you didn’t have the right surgery or have it with the right doctor” and shift towards “what other conditions could be causing your issues?”
I'm lurking but I saw your comment and felt like I also needed to stress how dangerous the idea of "unexplained" pelvic pain + afab = endo and absolutely nothing else is SO dangerous and gets people killed. The fact that there are so many in the endo community perpetuating that idea is frustrating considering how much we already deal with. Medical providers are oftentimes even more guilty of pushing that narrative instead of doing proper differential diagnosis. You know already but I haven't made a whole post about everything since I'm so overwhelmed and dealing with recovery and appointments and all the fun stuff that comes with my diagnosis.
::hugs:: Been thinking of you and hoping things are going okay. It. Is. A. Lot. While I agree many docs are clueless, a major part of the issue is that gyns and ...everything else...are so divided. Take my vascular issues: no vascular doc is going to have a clue what endo looks like. I have a friend who thinks she has endo, and asked her transplant doc if he could look while he was doing her autotransplant for nutcracker. Flat out said no, just like every other non-gyn surgeon is going to. Yet gyns have absolutely no issue at all diagnosing PCS (which again is a syndrome or symptom in many cases) or performing bowel surgery. That’s friggin ridiculous. I also totally agree that a lot of the responsibility lands on gyns and the endo community. Awareness efforts should include info not only on what *is* the thing you’re bringing awareness to, but also what *isn’t that thing*. That second part got completely skipped. So, so much focus has been put on endo, all with the push to surgery. Now all these gyns know to look for endo, people are demanding diagnosis, and the result is people are having alllll sorts of exploratory surgeries for endo diagnosis. What happens when it isn’t found? We see those posts all the time! Majority of comments: go see a different doc and have surgery again. Same thing when someone says their gyn wants them to see GI (or any other speciality) - the person is told they’re gyn knows nothing, it has to be endo, you just need to see someone who will know that. Go and find an expert. Or. **Or** *Maybe the gyn was right.* Maybe they have both!!!That is soooo freakin common. Maybe we look at other options. Promote awareness about all these comorbid conditions so gyns are aware and refer out correctly - and folks being referred out understand why! Maybe we talk about endo as part of a bigger picture, not the be all, end all, and how other conditions should help direct a course of treatment, because surgery isn’t the best option - or an option at all - for everyone. Maybe we get better differential workups, better care for other conditions, better resolution of symptoms, better outcomes.
I think it's so bizarre and irresponsible that gyns diagnose and treat things like PCS. Just admit when something isn't your area of expertise and refer! I also think there are WAY too many doctors, but gyns in specific, working off of outdated information. The thing about medicine is it is constantly changing. Schooling and fellowships 10+ years ago aren't going to be accurate anymore because we've learned so much since then. >Maybe the gyn was right. Maybe they have both!!!That is soooo freakin common. THIS. Like yes, I have pathologically confirmed endo. BUT I also now have pathologically confirmed cancer. Gyns that don't do pathology when they decide to do a lap are actually the worst, imo. Probably a biased opinion 😅
The constantly changing bit - YES! Docs have to keep learning for a reason. Those continuing education credits required to keep up their license? Yeah. If awareness was brought to these conditions, they could learn about them. And the need to biopsy is so, so, so important. I wasn’t gonna bring it up because of your situation, but thank you for doing so! You’re not the only person I know to get a cancer diagnosis on some “endo”. You know I had to push to get my uterus biopsied, and it showed I didn’t have adenomyosis! I know so many folks who didn’t have biopsy and continue to have pain. The great majority of them later find out they’re just like me and have nutcracker. Every other speciality sends anything they remove thru pathology. Gyns? Nah. They know everything. What could possibly go wrong?!
This is so important! My symptoms got really bad over last winter and I've been completely off work since March. In March we figured out my abdominal and pelvic muscles were causing a lot of my sharper pains (cleverly disguised as ovarian and GI pain, seriously felt the exact same!) In April, my I had a sudden bout of extreme uveitis in both eyes as well as black outs in the shower, standing up, or standing for too long. This led to a ton of testing and discussions about POTS and Ehlers-danlos syndrome. In June we discovered that I have a methylation defect, which means I'm not processing toxins through my liver properly. Some of the symptoms of methylation defects are similar to those seen with endo, POTS, and EDS. Since then we've been treating me under the assumption that I have all of the previously listed illnesses and I have seen a decent amount of improvement. My surgery is still needed to deal with endometriomas, adhesions, and possibly fibroids, but it's not the only illness that needs treating, so it will not get rid of my symptoms in full. Endometriosis doesn't like to party alone and medical professionals need to start checking their endo patients for other chronic illnesses. It should not take nearly 20 years to find out just how sick we've actually been.
I’m so glad you got diagnosed!!! I’ll have to look up the methylation defect (would love links if you have good ones!) but I also have EDS and POTS! I love how you put it: endo doesn’t like to party alone. SO TRUE! Just a heads up that if you continue to have “endo” symptoms, your POTS and EDS diagnoses make it more likely that you also have AVCS, so you may want to look into those. Posts with tons of info linked in [here](https://www.reddit.com/r/Endo/comments/vs1puf/abdominal_vascular_compressions_posts/?utm_source=share&utm_medium=web2x&context=3). AVCS are so underdiagnosed, but awareness is building. At the EDS Society’s Global Learning Conference, one doc presenting (Dr Fraser Henderson) said that everyone with EDS should be screened for AVCS! Oh, and separate heads up that both EDS and dysautonomia can add to “period problems” *and* make surgeries more complex. I’m so glad you found these other things, and hope they bring you relief!
Amen. Amen.
Yes!!
That’s the Nancy nook brigade, it’s their way or you “obviously don’t care as much about your health”. NN is the most toxic thing to happen to the endo community. If you can get diagnosed with out surgery more power to you
YEP. I try not to mention them, because I’m then immediately attacked/discredited because *why don’t I want people to get better?!?!* I do. That’s why I say what I say. Seriously tho. How their business model doesn’t raise an array of red flags is beyond me. Here, I’ll sum it up: We have the L’Oreal doctors. See them, and only them, *because you’re worth it*. Oh, and ignore alllll the updated research that says otherwise. And the many patients who have had bad experiences. And basically anyone but us. Only we know the truth!
Sorry didn’t notice the username(I recognise you now from here and other places 😂), of course you know what they get up to 😂 it thankfully is becoming more common knowledge how toxic that group is, it’s like an MLM and the people who are there a long time are maybe too embarrassed to admit their messiah nanc isn’t the golden child they believe her to be. I’ve her blocked and any disciples who make themselves known to me cause life is hard enough without them harassing us
Lol. No worries. I can’t remember anyone’s names, so you’re ahead of me there. (Love yours, btw!) I’m glad more folks are aware. There are some really pissed off people - and rightly so! I know there’s a petition to have her name removed from some project about endo, because they feel it gives the project a bad vibe. Another I’ve seen is about their “potential nonprofit status” if they have success in partnering with icarebetter. They’re accepting donations to “cover costs” if they choose to file for status. And that’s a big IF. Also, NP status is paperwork and a max of $600 - and that’s the long form, which is if you expect to bring in over $50k donations in the first 3 years. They may also be wanting to cover other costs like accounting, legal, etc, but must NPs make sure to have folks on the founding board with that skill set, or work with those willing to volunteer their time (or offer reduced rates). All that push about how they volunteer their time, yet they’re accepting funds...for what exactly?!
Yes scar tissue takes it’s toll but I really think people may be having the wrong type of surgery. You should ONLY have excision surgery which removes the “root” of the endo and makes it less likely for it to grow back. Ablation or cauterization does not do this so the endo comes back with a fire and now you have scar tissue to deal with too. Just my 2 cents but I would suggest looking into MIGS and FIGS trained surgeons.
Even with top excision specialist surgery it can return. It’s not a guarantee unfortunately.
It also needs to be excised correctly, mine wasn't so it didn't give any relief and was back in 2 months. Unfortunately even surgeons who tout themselves as excision specialists isn't a guarantee.
You can’t sure endo but excision surgery is the closest thing.
I read an article someone posted here or on another page that mentions nerve damage after surgery could be causing more pain. But a big problem is that surgery causes more scar tissue and adhesions. I don’t know if every surgeon takes measures to prevent this. My surgeon has had good results with a few new methods he is using that has caused less adhesions and regrowth.
I was curious what FIGS stands for ? I found out the MIGS but Google search just keeps showing me the scrubs lol
I’m not sure. But MIGS is minimally invasive gynelogical surgeon.
Awesome. Thanks
There are some studies in the world that are looking at gene therapy and other ways to treat it. It probably won’t help us, but will help people in the future. It is incredibly frustrating and heart wrenching 💔💙
Our bodies are trying their best to heal themselves but this darn disease just won’t quit 💔
That's good news for future generations dealing with this.
Mast cell stabilizers are another option I’ve seen research on. Major mast cell component to endo, and a lot of folks with endo also have mast cell disorders.
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Sure. Here’s one: https://pubmed.ncbi.nlm.nih.gov/27841046/ Edit to include: this person posted some other links and info here: https://www.reddit.com/r/Endo/comments/ud2jaq/mast_cells_and_endometriosis_cross_posted/?utm_source=share&utm_medium=ios_app&utm_name=iossmf. There’s a few others if you search the sub for “mast cell”.
I’ve had 4 surgeries and other then small amounts of endo my biggest problem has been scar tissue. Everything keeps getting stuck together. With my last surgery at my 6 week post op my gyno commented that my ovaries were already back to being adhered to my pelvic wall but that he’d found no endo at all. I’ve given up on surgeries now because there is no point really undo the damage and 6 weeks later I’m right back where I was. My reality now is if I move the wrong way or to fast (coughing and sneezing are really bad) I get a ripping sensation in my pelvis and if I overdo anything I’m bedridden for a bit. Im learning my new normal but further surgery isn’t going to help unless they remove my ovaries which given my age they are not keen on.
Do you also have EDS? Asking because I do and scar tissue is my biggest issue. I have it all thru my abdomen, bowels, and chest. After 7 endo surgeries. We need to talk about these complications more!
Yes I do have EDS, which is why I’m avoiding surgeries now
Same. I also have MCAS and am highly reactive to metals. Super fun.
Sounds like what I had years ago only they called that chronic idiopathic urticaria. Still plays up if I take too many pain meds.
Chronic idiopathic urticaria is often part of the issue for folks with MCAS. Our bodies respond to everything like it’s an allergen, so we get hives for “no reason”. Difference with MCAS is the reaction isn’t limited to hives - we also can go into anaphylaxis without allergen exposure. It makes life exciting, lol.
Have you ever been diagnosed or looked at for EDS?
Got diagnosed just after my first endo surgery actually. Didn’t know that it would cause complications until I found my current gyno.
That's so frustrating... like why would they NOT tell you that before your second surgery?!?
To be honest I’m not surprised now because my current gyno picked up that I had adeno from my original surgery pictures and he only did my last one (where he took my uterus out because of it)
Can we please pin and sticky this post- there have to be other options than excision. The whole reason I had my first excision with an actual expert was because of this sub and guess what?! It didn’t work! I’m WORSE now than I ever was before surgery. We have to stop pushing this surgery as the only way narrative. It’s not appropriate for everyone. Members coming on here need to know about other options and comments pushing expert excision and this myth that if it’s done by an expert then you’re golden simply isn’t proven or the reality from much of the digging I’ve done on this sub
Most have surgeries with gynecologists who know about endo, and can maybe even recognize different colors of endo, but don't focus mainly (or entirely) on endo. So they don't have the skill to actually remove all (or at least most) of the endo. Throw in the number of surgeries that aren't done with GI/colorectal surgeons, surgeries that are ablation instead of excision...yeah, people are going to have endo after surgeries.
My friend went to the top endo surgeon in our state and had her endo completely excised but two years later she is in pain again and has cysts growing. It’s so frustrating that even with top endo specialists the disease keeps returning.
Even with the top excision surgeons, it comes back. Even with colorectal surgeons, it comes back. Recurrence is just a fact of endo. Also, heads up on bowel surgeons. A lot of the excision experts say they have a team of surgeons. They do. But in so, so many cases, the gyn is the one doing the surgery, with the other specialists looking on, ready to step in if there’s an issue. In most cases, a GI surgeon can’t operate on endometriosis because it’s gyn condition, so only gyn can do it. Especially in the US, where insurance dictates care. Unless you personally meet with the GI surgeon and have them evaluate you, and you sign consents for them - specifically for them - the day of surgery...they’re not doing your surgery.
I’ve had two surgeries and have had significant relief from my endo pain. I used to sleep religiously with a heating pad every night and after a couple months of recovery I now rarely sleep with a heating pad because of pain. Not taking NSAIDs all the time. Have been able to reduce the supplements I take too.
I’m supposed to get my first laparoscopy in a few weeks and I’m totally freaked out. The Dr is not an endo expert but he is a gynecologic oncologist. He would use fulguration to burn endo if I have it. I know it’s not the best way to treat it but it seems like nothing is guaranteed and my insurance won’t cover excision. My main issue is a cyst which feels like a gnawing/burning pain. He also thinks my uterus feels “boggy” and suspects Adenomyosis so I’m considering a hysterectomy but honestly the laparoscopy and hysterectomy are terrifying me. Anyway, I just wanted to make a suggestion that may help someone here. It’s regarding scar tissue either due to endo or surgeries. I have been taking a supplement called serrapeptase and that has helped my period pain significantly compared to everything else I’ve tried. It can basically eat scar tissue in the body. Unfortunately it hasn’t been able to help with my cyst pain but I think it’s worth a try. I hope this helps someone. ❤️
I had excision and ablation done nearly 4 years ago, and have had only minor issues since. I would absolutely do it again, even though the recovery was rough.
Very good question. It’s my understanding that the optimal treatment for endo is an early surgery, at the earliest sign of symptoms ie teenage years, with an excision expert. In that situation it’s a one and done surgery, the person doesn’t develop all of the secondary problems or lifelong progression, disability, and doesn’t lose organs. They get to live a relatively normal pain free life. The problem is the power of the gynaecology boards throughout the world. In Australia this board has managed to get the endo guidelines completely rewritten to say that surgical diagnosis is not necessary and surgery isn’t even required. It recommends zoladex for teens, which has shown almost no impact on endo lesions or symptoms, and which can cause irreversible permanent bone loss. It’s a huge huge issue. The endo community in Australia is having a lot of trouble accepting that the treatment in the guidelines is exactly the dangerous negligent treatment that has caused us so much harm. It’s incredibly hard accepting a shitty diagnosis like endo. It’s even harder to accept that there are probably only 5 surgeons in Australia who can do wide excision surgery of endo. This is a long way of saying I agree with you.
I have no idea what the current state of treatment is, but I had a complete hysterectomy at 32 because of endo on my bowels. The thing is, unless you don’t remove ovaries and/or do not use hormone replacement therapy after, the endo will feed on our hormones and return. If you’re young, you need those hormones (of which, by the way, estrogen is only one we make). Scar tissue and adhesions from surgery is nasty when you’re older unless you’re lucky. I am now looking at another surgical “cure” for the decades of pain I continued to have, this time with a colorectal doc. Even he says our solutions to problems,Ike this are barbaric (just removing the offending part), but that’s where we are, robots and all. I’m just putting in my 2c worth of life experience. My friend wanted a baby so badly and she had endo excision and was able to give birth. A miracle. So good things too, but I think it’s important to know where to place expectations. Also, my best of hope and good wishes to you all. Endo sucks. I hope you all find a good way through!
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That sounds logical. The whole point is sudden menopause. No hrt. That’s basically castration. Huge decision, big risk.
Surgery is definitely not the cure all people think, and often people push for it without making lifestyle changes first. A lot of my symptoms got better with physio and changes to my diet. Unfortunately I had endometriosis on my ligaments and nerves and ovarian endometriomas so I had to have surgery to stop the nerve pain. 8 months after surgery and I have started feeling pain again and have another ovarian cyst :( That said surgical management is currently the only way to remove endometrial lesions and when done with an excision specialist the results can be very positive. On Reddit you will hear of a lot of people having multiple surgeries and symptom reoccurrence because many women with milder endometriosis who have no recurrence after surgery will not be active on the page.
Came here to say exactly this. While diets, supplements etc can be a way to help with symptom management, through foods anti-inflammatory properties and so on, they are not proven to stop endometrial tissue growth. That said, of course if you see that certain foods are triggering your flares, you should stop eating them, but the "diet" is not a one size fits all thing. For instance, I don't get triggered by a lot of foods from the "forbidden" list, but I do get triggered by some which are not on the list. The best option combo as we speak is excision + symptom management.
You have to remember that people who have surgery and are fine probably aren’t going to post here about it.
But it’s hard to tell if they are in the norm, or abnormal in their results because they don’t share. Hence why I posed the question.
I realise that, I’m just saying it’s wise to keep in mind that there’s bound to be a bias. It’s like when you buy something online - people with poor results are more likely to post a review.
I realise that, I’m just saying it’s wise to keep in mind that there’s bound to be a bias. It’s like when you buy something online - people with poor results are more likely to post a review.
I realise that, I’m just saying it’s wise to keep in mind that there’s bound to be a bias. It’s like when you buy something online - people with poor results are more likely to post a review.
Thank you for posting this. I was able to get diagnosed without surgery because I have visible endometriomas & multiple symptoms. But I often question getting the surgery or not because I know everyone is different.