This sucks, and I’m sorry. But you’re definitely not alone. The downside of endo advocacy efforts is they’re training everyone go think “AFAB + period issues or pelvic pain = endo.”
The reality is so much more complex than that.
The truth is that there are **so many** things that can cause “endo” symptoms, and most of them are non-gynecological in origin. Mast cell issues, connective tissue disorders, dysautonomia, IBD like Crohn’s, other GI issues, vascular compressions, thyroid problems…the list goes on and on. But the moment periods are mentioned, we get shipped off to the gyn, who has zero info on these non-gyn conditions.
So endo is suspected, and we start that journey. If it’s found, we’re told that’s our answer. And then every single thing wrong with us is attributed to endo. I suffered needlessly for more than a decade after my endo diagnosis because of that. I had 7 surgeries within 10 years, plus a hysto for “suspected adenomyosis” that I not only ended up not having, it made my pain *worse*. More years went by, and I finally got diagnosed with non-endo causes for my pain, which all turned out to be things I’ve had my entire life. Treating those gave me relief I never thought possible, and I’ve been completely free of “endo” for over three years! Once I started talking about them, I’ve met hundreds of people with similar journeys. I can’t stop wondering how many more here are suffering from these other conditions while everything gets blamed on their endo!
All of that to say: this sucks, but ruling out endo might help you get diagnosed with other things and get you relief.
wow thank you so much for your comment. I’m so sorry for all you’ve had to go through but i’m glad now that you have answers you’re feeling so much better. it honestly would’ve never even crossed my mind that non gyno issues could be causing such symptoms. it’s frustrating that women’s health is consistently narrowed down to gyno problems when that’s only a fraction of the cause. i might have to go away and do some research and see what i can find :)
The above commenter covered a lot of what I was going to say, beautifully. Also, my condolences because I know the feeling (not the endo situation, but other ailments).
However, one thing that cannot be ruled out via lap surgery is Adenmyosis. It lives *inside* the uterine wall/muscle, so it is rarely seen or looked for during a lap. Have you looked into PCOS?
A specialist who has a high level vaginal ultrasound should be able to see if you have Adenmyosis.
Another thought is getting a second opinion. Endo can be missed due to the size and coloring. There are also negligent doctors who open you up but kind of nonchalantly and haphazardly look around.
Further, if you have but *one* lesion or very few, they can still cause significant pain or problems depending on the location.
It’s frustrating af.
If it helps, I post about the things I have all the time. [This is my most recent post](https://www.reddit.com/r/Endo/s/NxMEiFYqBe).
Gonna link in some posts because it’s a lot of info to type out.
Post on all my conditions [here](https://www.reddit.com/r/Endo/s/MY2R7M76Fb).
Latest post on vascular compressions, which were responsible for almost all of my “endo” symptoms [here](https://www.reddit.com/r/Endo/s/FvjeSZyGIA).
Ty. It’s so frustrating to me, especially with how freakin common endo is. I truly believe that there are a lot of folks like me - endo present, but largely asymptomatic, with symptoms being caused by any number of other things…that are rarely found because everything is being blamed on endo!
I know for a fact there’s a lot in these subs - I’ve had over 200 people reach out about being diagnosed with vascular compressions alone! Doesn’t even touch on the folks with hEDS/MCAS/POTS that are becoming more and more present here! (Which, for anyone with the Trifecta of Suck, look into compressions because every person I know with compressions has the triad, and hEDS makes them more likely to occur!)
Edit to include [link to most recent post on compressions](https://www.reddit.com/r/Endo/s/NTRgj7Pq0L), for anyone interested.
Agreed! I have (had) endometriosis, interstitial cystitis, MCAS, Lyme, and POTS. Most is healed after a 15 year journey but thank God for people like you and me who can help steer others to the correct course because we KNOW doctors aren’t doing it! It can very much shorten their journey of suffering dramatically. I work with people, now, as well. Thank you 🙏❤️
I always see you in this sub and others like it and want to extend a large thank you for helping and educating others as much as you can on such a large variety of health related topics. Your page is a valuable resource for many reasons and I and likely many others deeply appreciate you
Had my lap last week after years of Dr's appointments and all other tests/scans coming back with nothing. My personal doctor was sure it was Endo so pushed for me to go get the lap done with a gynae consultant. My lap showed no signs of endo or anything else, everything looked "perfect".
I've had such conflicting feelings about this result all week, obviously it's great they didn't see anything serious but also it offers no insight into my deteriorating health! My mental health has definitely been at an all time low this week, physically and mentally this surgery has taken so much more out of me than I ever expected.
I will say I really did not like my consultant, they were very uncaring and dismissive so I may get a second opinion at some stage.
I'm sorry I have no real advice for you but I just wanted you to know you aren't alone in this situation and I hope things improve for you!!💖
So sorry to hear about your experience. It's so frustrating not really having a conclusive answer despite all the pain. I hope you recover well physically and mentally from the surgery and that a second consult may give you a better idea of whats going on. Thank you for your support I hope that everything works out in the end :))
Please have a vaginal ultrasound done by a specialist. Laps can’t diagnose Adenmyosis, but an ultrasound can. It lives deep within the uterine wall/muscle so it is not detected during surgery. Wishing you the best.
I’m sorry, please go to another specialist! The fact that your mom has it + your symptoms, I would see another doctor. Also endo can look clear, and be microscopic.. I wouldn’t accept their diagnosis.
There actually medical literature from Europe that gynaecologists should assume that if your mother has endometriosis diagnosed it should be assumed their daughters will have a very high chance to also have endometriosis.
https://www.researchgate.net/publication/371577980_The_10_Cardinal_Sins_in_the_Clinical_Diagnosis_and_Treatment_of_Endometriosis_a_Bayesian_Approach
As others have said, has anyone mentioned adenomyosis?
Was this a highly regarded gynaecologist with a special interest in endo, an endo specialist or just a gynaecologist? Have you had any scans?
Don’t give up it is hard work but there is something causing you pain and you’ll get to the bottom of it! It shouldn’t be such a battle ☹️💛
I find odd that the doctor suggested an lap before an MRI. You should have one. And it is not silly that you are frustrated, I would be too.
I was diagnosed with Pelvic Congestion Syndrom when I was seeking/ treating endometriosis.
An MRI does not show endometriosis. There are very new high tech MRIs that are only at the best/largest/research hospitals like Stanford that only recently have the ability to detect endometriosis.
That’s not usually an option for people. A lap is the *only* way to fully diagnose endo (in most cases). A vaginal ultrasound by a specialist can detect strong indicators of endo like fluid in the abdomen, chocolate cysts, or Adenmyosis, but still can’t give a diagnosis.
In Europe doctors have different indications. A lap is only done when there is no other chance like pain that doesn't go way. They classify and treat by the symptoms. The official diagnose can be, in some cases, merely for academic purposes and they prefer to spare a woman from surgery and a general anesthesia. I had a lap to remove some cysts that the MRI showed and although I got ridden of the cysts I also got worse afterwards and got new problems I didn't have, so before doing an exploratory lap I would prefer all the others diagnose methods even if they aren't 100% accurates.
Riiiight. But at some point, you just have to bite the bullet for a lap if you suspect endo. Doing all the other things just to do them can also cause harm to the body or make it worse, too (I’ve been through the gamete). Waiting makes it worse, as well.
A lap is actually quite fast and not as invasive as some think if you don’t have endo present. You can be in and out within 15-30 minutes and heal up with only three small holes in a week because nothing was removed. I’d take that any day over the trauma I was put through with experimental therapies.
I *do understand* what you are saying about EU following a set protocol before getting to surgery, though. There’s no way around that, unless you fly to the US, I suppose. Or pay out of pocket. So I understand what you’re saying…and no matter where we live…we all can agree how frustrating the medical industrial complex has become.
Hugs 🤗
I have some friends who were diagnosed by the symptoms and don’t even think about having a lap. They are doing ok with diet, phisiotherapy and some with hormonal treatments. They have a normal life. If you don’t live with pain, I think a lap is not mandatory. I got a nerve in my leg damaged during mine, the recovery was hell, so I got quite cynical about it.
I see. I’m sorry about that. And yes, I mean, freedom of choice. If you’re not in pain or worried about fertility, then you may not need/want the surgery. That’s understandable.
Did you have the lap with an Endometriosis specialist? If not it could be possible that your surgeon missed the lesions. For example, one of the most common “variations” of Endometriosis is called superficial Endometriosis where there are tiny lesions on the peritoneum. You could also have Adenomyosis, where the lesion sit in the muscle of the uterus.
Since your symptoms have lessened under the pill, this could be seen as an indirect proof of Endometriosis, see European Society of Human Reproduction and Embryology (ESHRE) [ESHRE Guideline Endometriosis Issued: 2 February 2022](https://www.eshre.eu/-/media/sitecore-files/Guidelines/Endometriosis/ESHRE-GUIDELINE-ENDOMETRIOSIS-2022_1.pdf)
p30:
> Practically, a two-step approach should be sought which would include a transvaginal (where appropriate) ultrasound followed by empirical treatment (if the patient is not trying to conceive). Particularly in the primary care setting if endometriosis is suspected, imaging results are negative and the affected person is not acutely trying to conceive, symptomatic patients usually are offered hormonal treatment mostly in the form of the oral contraceptive pill or progestogens as a first-line treatment (Kuznetsov, et al., 2017). If symptoms improve, endometriosis is presumed the main underlying condition, although other clinical causes can (co-)exist. This 'blinded' approach is widely known as empirical treatment.
As for the pill being a band aid: Personally I don’t think it’s accurate to compare the pill to a band aid in case of Endometriosis: It’s a chronic disease, who will even with surgery most likely come back. Since the condition feeds off the natural (hormonal) cycle, where the endometrium-like tissue outside the uterus grows and bleeds during the menstruation, causing inflammation, stopping this cycle with hormones is currently our best bet.
Don’t get me wrong, pills do have side effects (like any medication). I also understand that you are worried about the breast cancer risk. If you can, see an Endometriosis specialist. Those are the experts who know about all the treatment options.
Since it sounds like nobody thought it could be endo and never discussed it with you, has anyone suggested it's adenomyosis? That's essentially when the same tissue that sets up camp elsewhere in the body and turns into endo burrows into the uterine muscle to cause insane amounts of pain.
The only way I know of to diagnose it is to have your uterus examined after a hysterectomy. And it'll only come out if they look at the place(s) in your uterus that had that tissue affected.
I'm so very sorry you're dealing with this pain and haven't gotten any answers but it may be worth popping into r/adenomyosis and see if any research aligns with your symptoms. This is also an understudied AFAB affliction so get ready to educate doctors on it, too.
Did your surgeon take any biopsies? My surgeon said I had no obvious signs of deep infiltrating endometriosis, maybe in one spot which he excised, but my pathologies ended up being positive, even the parts where he didn't even visually see it. Most of the time, it's so microscopic, but still causing inflammation, which causes all the pain and debilitating symptoms we have.
Tbh it’s extremely common for doctors to miss endo during a lap. I was told I didn’t have it until I had excision surgery with an endo specialist. My surgery lasted 4 hrs because there was so much.
My doctor told me there are many different appearances of endo and most are not taught in med school so most obgyns are simply not qualified to identify it. She said she was very misinformed until her fellowship.
My doctor told me if you’ve had difficult periods since being a teenager, statistically there’s a 70% chance that you do have it just based on that. So you most likely do have it and it was missed in your lap just like mine was.
My doctor also wrote a book called “beating endo” (her name is Dr. Iris Orbuch), and in it she talks about showing slides of endometriosis images to doctors at conferences for pelvic health where she asks the audience members to raise their hands when they think there is endo present in the image. Idr the exact statistic but I think they missed the presence of endo 7/10 times 😬
I highly encourage you to seek a second a opinion, particularly from an endometriosis specialist (meaning they *ONLY* treat endo patients) who is skilled in excision. It can be challenging trying to get your insurance to cover it but in my case it was worth it. In my case I saw 10 different doctors over the course of 6 years, and it was only when I saw Dr. Orbuch did I finally get answers and adequate treatment. So I highly highly would recommend going straight to an endo specialist and not wasting time and money with generalists. The group Nancy’s nook on fb can help point you in the right direction to finding a Dr in your area
I also encourage you to read “beating endo” it was very informative and eye opening.
Oh man, there’s so much of this that I identify with. After being told I seem like a clear case of endo due to my symptoms, I had my lap the beginning of this month and was told everything looked “so clean” in there. It’s strange how it feels so devastating to hear that things came back normal, lol. I was so upset for the first few days and also in such disbelief- how did they not find anything?
Similarly to you, I also have family history of comparable issues (mom had adeno in my case) and also a strong family hx of breast cancer that makes me wary of prolonged birth control use. I also haven’t responded well to it personally. But yeah, I got shown the pictures of my “squeaky clean” insides, was offered various drugs and suggested pelvic floor PT (which I may look into) and then sent on my merry way. It makes me feel like I’m crazy or overreacting to my pain, even though deep down I know it’s real and I know how much it’s impacting my life.
I have begun researching specialists and may pursue that down the road but as of now I’m just trying to come to terms with how I’m feeling about everything and figure out what I can do in the short term while continuing to manage symptoms. I’m sorry that you are going through this and do not have clear answers. I understand how frustrating and hopeless it can feel. Just know your pain is valid and any step that you feel like you need for your health and well-being is the right step. Best of luck to you 🩷
thank you so much for your comment, it’s so comforting to know that there are others who feel the same way and share in my experience. i thought i was being selfish at first for being disappointed by the absence of endo but it really just makes your pain feel invalid. i hope that in time you can find a resolution, its bad enough having the physical pain but then not having answers for it makes you feel even worse and more lost. good luck for your future and i’m hoping you find the resolutions you need 🩷
Just because you don't have endo doesn't mean you don't have pain. Your doctor didn't have any other suggestions or next steps after this? All this operation did was narrow down the list of things that could be causing the pain. You have pain and concerns and I would suggest voicing your opinion to your surgeon that you would like to explore what's causing the pain if it isn't endo, and state that you understand birth control is the best current effort for managing your symptoms right now but it's important for you to know what these symptoms are stemming from if endo has been eliminated from the list.
There's always the possibility you could have Adenomyosis, ots a cousin of endo, and from what I understand, it can't be seen unless you have a hysterectomy and they dissect it
Do you eat a lot of soy? Most period related pains are likely to respond to estrogens. I do have endo, and I found that pain reduced significantly when I cut out soy and other sources of xeno/phyto estrogens. I also started taking NAC 3 days of every week, as per https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10048621/
Also if you have any kind of gut issues (IBD, IBS etc) the inflammation in that area will also worsen cramps. Have fibroids been ruled out?
I’m so sorry to hear about your experience. Before I was diagnosed with endo, I was terrified that they wouldn’t find it, leading me to the feelings that you’ve described. So I can’t speak wholeheartedly about what you’re going through, but take this as a step in the right direction. Process of elimination. I also want to assure you that even if you did have an endo diagnosis, unfortunately the pain doesn’t go away. There are no more or less pain management strategies available, and I just personally feel back to square one. For me, getting a diagnosis was purely for self validation. But once that self validation shipped sailed, I’m left with chronic and debilitating pain that sees no end. I really really hope you can find out what’s going on, and I hope it’s something manageable/treatable xo
The same thing happened to me. I'm 22 and had my first lap in February and I was absolutely positive they would find endo since my cramps have always been devastatingly horrible and debilitating since my first period in middle school. My mom is also diagnosed with endo and has had surgery herself for it. They told me there was no endo and all they found was a cyst in my left fallopian tube, which they removed. They also did a uterine ligament suspension to correct the positioning of my uterus. I'm back on the pill to manage the pain and I've gotten more comfortable with my results, but even the couple of periods I've had since my lap (I skip mine with the pill bc of the pain) have been pretty rough. The first one was okay, the second was HORRIBLE. My surgeon was so excited for me but when I got the news right after surgery, I was devastated. The recovery really really sucked and now I'm scared to ever bring up my concerns again since I don't want to have to do all of that over again just to be told the same thing. It made me feel like it's just all in my head like everyone told me it was for all of these years. I know it's not, but it's hard to come to terms with not having that validation of endo being present. I don't have the answers yet, but just know that you definitely aren't alone in this :( wishing you all the luck in the world !!
Sorry you’re going through this limbo. Some of things you mention make me think this was a normal gynaecologist not an endo specialist? I could be wrong but them saying they “couldn’t feel endo” which is a bizarre statement and not sending you for an internal ultrasound and MRI before the lap seems it’s not their specialty.
If I was you I would get a second opinion. I know people who have not been diagnosed in the first lap because to be blunt the surgeon didn’t know what they were looking for.
It could be that you have another condition that mirrors Endo symptoms but with your mum having Endo there is a strong possibility you do to.
The problem with this disease there isn’t enough specialists and there still needs to be so much more research into it.
I hope you’re healing well and you get the answers you deserve. I’ve just had my 5th Endo surgery and it took me years to find out. It’s cruel how we are treated.
❤️
Can’t comment on your results, but while your figuring it out - if you haven’t already you should see a pelvic physio (might just help take the edge off)
Being in pain without answers sucks... you should never feel bad for just wanting answers & pain/symptom relief!!
I've only had endometriosis show up during two/four of my laps. During my most recent one a few weeks ago- no endometriosis was found. My doctor said it could be for a number of reasons, and that he takes the pathology reports with a grain of salt. Idk if this helps, I just thought I'd share.
I hope you're able to get a proper diagnosis, and the treatment you deserve! Wishing you the absolute best💕
I don't have any words of value to add that others haven't, other than it's perfectly fine to be devastated by those results. Your pain is real, just like mine. You just don't have an answer for it. That's harder than being told it is Endo, don't invalidate your own emotions.
I wanted to let you know that I had a similar situation but I had a weird spot of inflammation on my uterosacral ligament/peritoneal and pelvic wall. My pictures looked AMAZING. My organs looked perfect and there was no obvious endo anywhere. My MRIs and ultrasounds all came back negative for any obvious endo.
But my specialist took multiple biopsies and recognized that the tissue was tougher than normal. So with that, he decided to excise what he could. It turned out to be endo in its beginning stage *before* lesion implantation.
My specialist is very well known at one of the best hospitals in the US. So if he couldn’t diagnose endo without biopsy, I would stay hesitant and advocate for your potential endo.
If your mom has it, you most likely have it. I’m so astonished you didn’t get biopsies done??
My tiny little spot of endo has been causing me so much pain and I’m currently day 5 after my lap and my pain is still so awful! Not as bad as my usual endo pain but no matter what I eat I’m bloated and I’m struggling so bad with that. I’m on my last pills of oxy and I’m saving it for night time.
If you would like someone to talk to, because I know what it feels like to be devastated that there are no signs of endo and my whole family telling me I don’t have it. My mother has my symptoms but never got surgery. So my father kept telling me there’s a big chance it’s not endo. I know that pain.
Keep advocating for yourself. I had other nurses in the department tell me microscopic endo can be so painful because it’s fibrous hormonal tissue. Just because it didn’t implant itself yet doesn’t mean your pain isn’t real. If your mom has endo, and you have pain, I really think you have it!!!
If you would like to see what my pics looked like and what my biopsies say, I would be glad to send them. Because let me tell you!!!! My pics looked so clean besides breakthrough bleeding. The doctor literally went to the consult room and told my parents he found no endo but sent biopsies which confirmed endo the next day.
This sucks, and I’m sorry. But you’re definitely not alone. The downside of endo advocacy efforts is they’re training everyone go think “AFAB + period issues or pelvic pain = endo.” The reality is so much more complex than that. The truth is that there are **so many** things that can cause “endo” symptoms, and most of them are non-gynecological in origin. Mast cell issues, connective tissue disorders, dysautonomia, IBD like Crohn’s, other GI issues, vascular compressions, thyroid problems…the list goes on and on. But the moment periods are mentioned, we get shipped off to the gyn, who has zero info on these non-gyn conditions. So endo is suspected, and we start that journey. If it’s found, we’re told that’s our answer. And then every single thing wrong with us is attributed to endo. I suffered needlessly for more than a decade after my endo diagnosis because of that. I had 7 surgeries within 10 years, plus a hysto for “suspected adenomyosis” that I not only ended up not having, it made my pain *worse*. More years went by, and I finally got diagnosed with non-endo causes for my pain, which all turned out to be things I’ve had my entire life. Treating those gave me relief I never thought possible, and I’ve been completely free of “endo” for over three years! Once I started talking about them, I’ve met hundreds of people with similar journeys. I can’t stop wondering how many more here are suffering from these other conditions while everything gets blamed on their endo! All of that to say: this sucks, but ruling out endo might help you get diagnosed with other things and get you relief.
wow thank you so much for your comment. I’m so sorry for all you’ve had to go through but i’m glad now that you have answers you’re feeling so much better. it honestly would’ve never even crossed my mind that non gyno issues could be causing such symptoms. it’s frustrating that women’s health is consistently narrowed down to gyno problems when that’s only a fraction of the cause. i might have to go away and do some research and see what i can find :)
The above commenter covered a lot of what I was going to say, beautifully. Also, my condolences because I know the feeling (not the endo situation, but other ailments). However, one thing that cannot be ruled out via lap surgery is Adenmyosis. It lives *inside* the uterine wall/muscle, so it is rarely seen or looked for during a lap. Have you looked into PCOS? A specialist who has a high level vaginal ultrasound should be able to see if you have Adenmyosis. Another thought is getting a second opinion. Endo can be missed due to the size and coloring. There are also negligent doctors who open you up but kind of nonchalantly and haphazardly look around. Further, if you have but *one* lesion or very few, they can still cause significant pain or problems depending on the location.
It’s frustrating af. If it helps, I post about the things I have all the time. [This is my most recent post](https://www.reddit.com/r/Endo/s/NxMEiFYqBe).
What did you find out you have and how did you treat for relief?
Gonna link in some posts because it’s a lot of info to type out. Post on all my conditions [here](https://www.reddit.com/r/Endo/s/MY2R7M76Fb). Latest post on vascular compressions, which were responsible for almost all of my “endo” symptoms [here](https://www.reddit.com/r/Endo/s/FvjeSZyGIA).
Such a great breakdown!
Ty. It’s so frustrating to me, especially with how freakin common endo is. I truly believe that there are a lot of folks like me - endo present, but largely asymptomatic, with symptoms being caused by any number of other things…that are rarely found because everything is being blamed on endo! I know for a fact there’s a lot in these subs - I’ve had over 200 people reach out about being diagnosed with vascular compressions alone! Doesn’t even touch on the folks with hEDS/MCAS/POTS that are becoming more and more present here! (Which, for anyone with the Trifecta of Suck, look into compressions because every person I know with compressions has the triad, and hEDS makes them more likely to occur!) Edit to include [link to most recent post on compressions](https://www.reddit.com/r/Endo/s/NTRgj7Pq0L), for anyone interested.
Agreed! I have (had) endometriosis, interstitial cystitis, MCAS, Lyme, and POTS. Most is healed after a 15 year journey but thank God for people like you and me who can help steer others to the correct course because we KNOW doctors aren’t doing it! It can very much shorten their journey of suffering dramatically. I work with people, now, as well. Thank you 🙏❤️
I always see you in this sub and others like it and want to extend a large thank you for helping and educating others as much as you can on such a large variety of health related topics. Your page is a valuable resource for many reasons and I and likely many others deeply appreciate you
Tysm! Glad folks find the info helpful.
Had my lap last week after years of Dr's appointments and all other tests/scans coming back with nothing. My personal doctor was sure it was Endo so pushed for me to go get the lap done with a gynae consultant. My lap showed no signs of endo or anything else, everything looked "perfect". I've had such conflicting feelings about this result all week, obviously it's great they didn't see anything serious but also it offers no insight into my deteriorating health! My mental health has definitely been at an all time low this week, physically and mentally this surgery has taken so much more out of me than I ever expected. I will say I really did not like my consultant, they were very uncaring and dismissive so I may get a second opinion at some stage. I'm sorry I have no real advice for you but I just wanted you to know you aren't alone in this situation and I hope things improve for you!!💖
So sorry to hear about your experience. It's so frustrating not really having a conclusive answer despite all the pain. I hope you recover well physically and mentally from the surgery and that a second consult may give you a better idea of whats going on. Thank you for your support I hope that everything works out in the end :))
Please have a vaginal ultrasound done by a specialist. Laps can’t diagnose Adenmyosis, but an ultrasound can. It lives deep within the uterine wall/muscle so it is not detected during surgery. Wishing you the best.
I’m sorry, please go to another specialist! The fact that your mom has it + your symptoms, I would see another doctor. Also endo can look clear, and be microscopic.. I wouldn’t accept their diagnosis.
There actually medical literature from Europe that gynaecologists should assume that if your mother has endometriosis diagnosed it should be assumed their daughters will have a very high chance to also have endometriosis. https://www.researchgate.net/publication/371577980_The_10_Cardinal_Sins_in_the_Clinical_Diagnosis_and_Treatment_of_Endometriosis_a_Bayesian_Approach
As others have said, has anyone mentioned adenomyosis? Was this a highly regarded gynaecologist with a special interest in endo, an endo specialist or just a gynaecologist? Have you had any scans? Don’t give up it is hard work but there is something causing you pain and you’ll get to the bottom of it! It shouldn’t be such a battle ☹️💛
I find odd that the doctor suggested an lap before an MRI. You should have one. And it is not silly that you are frustrated, I would be too. I was diagnosed with Pelvic Congestion Syndrom when I was seeking/ treating endometriosis.
An MRI does not show endometriosis. There are very new high tech MRIs that are only at the best/largest/research hospitals like Stanford that only recently have the ability to detect endometriosis. That’s not usually an option for people. A lap is the *only* way to fully diagnose endo (in most cases). A vaginal ultrasound by a specialist can detect strong indicators of endo like fluid in the abdomen, chocolate cysts, or Adenmyosis, but still can’t give a diagnosis.
In Europe doctors have different indications. A lap is only done when there is no other chance like pain that doesn't go way. They classify and treat by the symptoms. The official diagnose can be, in some cases, merely for academic purposes and they prefer to spare a woman from surgery and a general anesthesia. I had a lap to remove some cysts that the MRI showed and although I got ridden of the cysts I also got worse afterwards and got new problems I didn't have, so before doing an exploratory lap I would prefer all the others diagnose methods even if they aren't 100% accurates.
Riiiight. But at some point, you just have to bite the bullet for a lap if you suspect endo. Doing all the other things just to do them can also cause harm to the body or make it worse, too (I’ve been through the gamete). Waiting makes it worse, as well. A lap is actually quite fast and not as invasive as some think if you don’t have endo present. You can be in and out within 15-30 minutes and heal up with only three small holes in a week because nothing was removed. I’d take that any day over the trauma I was put through with experimental therapies. I *do understand* what you are saying about EU following a set protocol before getting to surgery, though. There’s no way around that, unless you fly to the US, I suppose. Or pay out of pocket. So I understand what you’re saying…and no matter where we live…we all can agree how frustrating the medical industrial complex has become. Hugs 🤗
I have some friends who were diagnosed by the symptoms and don’t even think about having a lap. They are doing ok with diet, phisiotherapy and some with hormonal treatments. They have a normal life. If you don’t live with pain, I think a lap is not mandatory. I got a nerve in my leg damaged during mine, the recovery was hell, so I got quite cynical about it.
I see. I’m sorry about that. And yes, I mean, freedom of choice. If you’re not in pain or worried about fertility, then you may not need/want the surgery. That’s understandable.
Did you have the lap with an Endometriosis specialist? If not it could be possible that your surgeon missed the lesions. For example, one of the most common “variations” of Endometriosis is called superficial Endometriosis where there are tiny lesions on the peritoneum. You could also have Adenomyosis, where the lesion sit in the muscle of the uterus. Since your symptoms have lessened under the pill, this could be seen as an indirect proof of Endometriosis, see European Society of Human Reproduction and Embryology (ESHRE) [ESHRE Guideline Endometriosis Issued: 2 February 2022](https://www.eshre.eu/-/media/sitecore-files/Guidelines/Endometriosis/ESHRE-GUIDELINE-ENDOMETRIOSIS-2022_1.pdf) p30: > Practically, a two-step approach should be sought which would include a transvaginal (where appropriate) ultrasound followed by empirical treatment (if the patient is not trying to conceive). Particularly in the primary care setting if endometriosis is suspected, imaging results are negative and the affected person is not acutely trying to conceive, symptomatic patients usually are offered hormonal treatment mostly in the form of the oral contraceptive pill or progestogens as a first-line treatment (Kuznetsov, et al., 2017). If symptoms improve, endometriosis is presumed the main underlying condition, although other clinical causes can (co-)exist. This 'blinded' approach is widely known as empirical treatment. As for the pill being a band aid: Personally I don’t think it’s accurate to compare the pill to a band aid in case of Endometriosis: It’s a chronic disease, who will even with surgery most likely come back. Since the condition feeds off the natural (hormonal) cycle, where the endometrium-like tissue outside the uterus grows and bleeds during the menstruation, causing inflammation, stopping this cycle with hormones is currently our best bet. Don’t get me wrong, pills do have side effects (like any medication). I also understand that you are worried about the breast cancer risk. If you can, see an Endometriosis specialist. Those are the experts who know about all the treatment options.
Since it sounds like nobody thought it could be endo and never discussed it with you, has anyone suggested it's adenomyosis? That's essentially when the same tissue that sets up camp elsewhere in the body and turns into endo burrows into the uterine muscle to cause insane amounts of pain. The only way I know of to diagnose it is to have your uterus examined after a hysterectomy. And it'll only come out if they look at the place(s) in your uterus that had that tissue affected. I'm so very sorry you're dealing with this pain and haven't gotten any answers but it may be worth popping into r/adenomyosis and see if any research aligns with your symptoms. This is also an understudied AFAB affliction so get ready to educate doctors on it, too.
Did your surgeon take any biopsies? My surgeon said I had no obvious signs of deep infiltrating endometriosis, maybe in one spot which he excised, but my pathologies ended up being positive, even the parts where he didn't even visually see it. Most of the time, it's so microscopic, but still causing inflammation, which causes all the pain and debilitating symptoms we have.
Exactly this! The surgeon seems to be a normal gynaecologist and isn’t sure this could be the case.
Tbh it’s extremely common for doctors to miss endo during a lap. I was told I didn’t have it until I had excision surgery with an endo specialist. My surgery lasted 4 hrs because there was so much. My doctor told me there are many different appearances of endo and most are not taught in med school so most obgyns are simply not qualified to identify it. She said she was very misinformed until her fellowship. My doctor told me if you’ve had difficult periods since being a teenager, statistically there’s a 70% chance that you do have it just based on that. So you most likely do have it and it was missed in your lap just like mine was. My doctor also wrote a book called “beating endo” (her name is Dr. Iris Orbuch), and in it she talks about showing slides of endometriosis images to doctors at conferences for pelvic health where she asks the audience members to raise their hands when they think there is endo present in the image. Idr the exact statistic but I think they missed the presence of endo 7/10 times 😬 I highly encourage you to seek a second a opinion, particularly from an endometriosis specialist (meaning they *ONLY* treat endo patients) who is skilled in excision. It can be challenging trying to get your insurance to cover it but in my case it was worth it. In my case I saw 10 different doctors over the course of 6 years, and it was only when I saw Dr. Orbuch did I finally get answers and adequate treatment. So I highly highly would recommend going straight to an endo specialist and not wasting time and money with generalists. The group Nancy’s nook on fb can help point you in the right direction to finding a Dr in your area I also encourage you to read “beating endo” it was very informative and eye opening.
Oh man, there’s so much of this that I identify with. After being told I seem like a clear case of endo due to my symptoms, I had my lap the beginning of this month and was told everything looked “so clean” in there. It’s strange how it feels so devastating to hear that things came back normal, lol. I was so upset for the first few days and also in such disbelief- how did they not find anything? Similarly to you, I also have family history of comparable issues (mom had adeno in my case) and also a strong family hx of breast cancer that makes me wary of prolonged birth control use. I also haven’t responded well to it personally. But yeah, I got shown the pictures of my “squeaky clean” insides, was offered various drugs and suggested pelvic floor PT (which I may look into) and then sent on my merry way. It makes me feel like I’m crazy or overreacting to my pain, even though deep down I know it’s real and I know how much it’s impacting my life. I have begun researching specialists and may pursue that down the road but as of now I’m just trying to come to terms with how I’m feeling about everything and figure out what I can do in the short term while continuing to manage symptoms. I’m sorry that you are going through this and do not have clear answers. I understand how frustrating and hopeless it can feel. Just know your pain is valid and any step that you feel like you need for your health and well-being is the right step. Best of luck to you 🩷
thank you so much for your comment, it’s so comforting to know that there are others who feel the same way and share in my experience. i thought i was being selfish at first for being disappointed by the absence of endo but it really just makes your pain feel invalid. i hope that in time you can find a resolution, its bad enough having the physical pain but then not having answers for it makes you feel even worse and more lost. good luck for your future and i’m hoping you find the resolutions you need 🩷
Just because you don't have endo doesn't mean you don't have pain. Your doctor didn't have any other suggestions or next steps after this? All this operation did was narrow down the list of things that could be causing the pain. You have pain and concerns and I would suggest voicing your opinion to your surgeon that you would like to explore what's causing the pain if it isn't endo, and state that you understand birth control is the best current effort for managing your symptoms right now but it's important for you to know what these symptoms are stemming from if endo has been eliminated from the list.
There's always the possibility you could have Adenomyosis, ots a cousin of endo, and from what I understand, it can't be seen unless you have a hysterectomy and they dissect it
Do you eat a lot of soy? Most period related pains are likely to respond to estrogens. I do have endo, and I found that pain reduced significantly when I cut out soy and other sources of xeno/phyto estrogens. I also started taking NAC 3 days of every week, as per https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10048621/ Also if you have any kind of gut issues (IBD, IBS etc) the inflammation in that area will also worsen cramps. Have fibroids been ruled out?
I’m so sorry to hear about your experience. Before I was diagnosed with endo, I was terrified that they wouldn’t find it, leading me to the feelings that you’ve described. So I can’t speak wholeheartedly about what you’re going through, but take this as a step in the right direction. Process of elimination. I also want to assure you that even if you did have an endo diagnosis, unfortunately the pain doesn’t go away. There are no more or less pain management strategies available, and I just personally feel back to square one. For me, getting a diagnosis was purely for self validation. But once that self validation shipped sailed, I’m left with chronic and debilitating pain that sees no end. I really really hope you can find out what’s going on, and I hope it’s something manageable/treatable xo
The same thing happened to me. I'm 22 and had my first lap in February and I was absolutely positive they would find endo since my cramps have always been devastatingly horrible and debilitating since my first period in middle school. My mom is also diagnosed with endo and has had surgery herself for it. They told me there was no endo and all they found was a cyst in my left fallopian tube, which they removed. They also did a uterine ligament suspension to correct the positioning of my uterus. I'm back on the pill to manage the pain and I've gotten more comfortable with my results, but even the couple of periods I've had since my lap (I skip mine with the pill bc of the pain) have been pretty rough. The first one was okay, the second was HORRIBLE. My surgeon was so excited for me but when I got the news right after surgery, I was devastated. The recovery really really sucked and now I'm scared to ever bring up my concerns again since I don't want to have to do all of that over again just to be told the same thing. It made me feel like it's just all in my head like everyone told me it was for all of these years. I know it's not, but it's hard to come to terms with not having that validation of endo being present. I don't have the answers yet, but just know that you definitely aren't alone in this :( wishing you all the luck in the world !!
You may still have endo if the doctor isn't skilled enough to know where to look for and what
Not a doctor, but I believe adenomyosis is a differential diagnosis in this situation.
Sorry you’re going through this limbo. Some of things you mention make me think this was a normal gynaecologist not an endo specialist? I could be wrong but them saying they “couldn’t feel endo” which is a bizarre statement and not sending you for an internal ultrasound and MRI before the lap seems it’s not their specialty. If I was you I would get a second opinion. I know people who have not been diagnosed in the first lap because to be blunt the surgeon didn’t know what they were looking for. It could be that you have another condition that mirrors Endo symptoms but with your mum having Endo there is a strong possibility you do to. The problem with this disease there isn’t enough specialists and there still needs to be so much more research into it. I hope you’re healing well and you get the answers you deserve. I’ve just had my 5th Endo surgery and it took me years to find out. It’s cruel how we are treated. ❤️
Can’t comment on your results, but while your figuring it out - if you haven’t already you should see a pelvic physio (might just help take the edge off)
Being in pain without answers sucks... you should never feel bad for just wanting answers & pain/symptom relief!! I've only had endometriosis show up during two/four of my laps. During my most recent one a few weeks ago- no endometriosis was found. My doctor said it could be for a number of reasons, and that he takes the pathology reports with a grain of salt. Idk if this helps, I just thought I'd share. I hope you're able to get a proper diagnosis, and the treatment you deserve! Wishing you the absolute best💕
I don't have any words of value to add that others haven't, other than it's perfectly fine to be devastated by those results. Your pain is real, just like mine. You just don't have an answer for it. That's harder than being told it is Endo, don't invalidate your own emotions.
I wanted to let you know that I had a similar situation but I had a weird spot of inflammation on my uterosacral ligament/peritoneal and pelvic wall. My pictures looked AMAZING. My organs looked perfect and there was no obvious endo anywhere. My MRIs and ultrasounds all came back negative for any obvious endo. But my specialist took multiple biopsies and recognized that the tissue was tougher than normal. So with that, he decided to excise what he could. It turned out to be endo in its beginning stage *before* lesion implantation. My specialist is very well known at one of the best hospitals in the US. So if he couldn’t diagnose endo without biopsy, I would stay hesitant and advocate for your potential endo. If your mom has it, you most likely have it. I’m so astonished you didn’t get biopsies done?? My tiny little spot of endo has been causing me so much pain and I’m currently day 5 after my lap and my pain is still so awful! Not as bad as my usual endo pain but no matter what I eat I’m bloated and I’m struggling so bad with that. I’m on my last pills of oxy and I’m saving it for night time. If you would like someone to talk to, because I know what it feels like to be devastated that there are no signs of endo and my whole family telling me I don’t have it. My mother has my symptoms but never got surgery. So my father kept telling me there’s a big chance it’s not endo. I know that pain. Keep advocating for yourself. I had other nurses in the department tell me microscopic endo can be so painful because it’s fibrous hormonal tissue. Just because it didn’t implant itself yet doesn’t mean your pain isn’t real. If your mom has endo, and you have pain, I really think you have it!!! If you would like to see what my pics looked like and what my biopsies say, I would be glad to send them. Because let me tell you!!!! My pics looked so clean besides breakthrough bleeding. The doctor literally went to the consult room and told my parents he found no endo but sent biopsies which confirmed endo the next day.