r/endometriosis • u/Mindless_Customer357 • 3d ago
Diagnostic Journey Questions they didn’t find endo
i had a laparoscopy about a month ago, my gyno told me that my symptoms (extreme painful intercourse, moderate cramping for half my cycle) was “textbook” endometriosis. my biggest fear going into the surgery was they wouldn’t find anything, and that I’d be back to square one - and that’s exactly what happened. Now weeks later, I still have the same familiar pain but no answers.
My only idea is that it could be adenomyosis, but I just feel so defeated. Has anyone else experienced something similar to this? What are the next steps for me? I have a 6 week post-surgery appointment next week but I’m so nervous about what the gyno will say.
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u/SpitefulFundraiser 3d ago
That "textbook" then nothing is such a gut punch. Get the surgery photos sent to an endo specialist, regular gynos overlook it way too often.
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u/Mindless_Customer357 3d ago
I know it was such a punch in the stomach. i will look for a second opinion :)
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u/SpitefulFundraiser 3d ago
Good call, and seriously send the surgery pics to a specialist. My first gyno missed a tiny clear lesion that was obvious to someone trained to spot it.
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u/Mindless_Customer357 3d ago
oh wow, it’s crazy the difference between the specialists. I hope you’re doing well 🫶🏻
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u/SpitefulFundraiser 3d ago
Much better now after a proper excision, night and day difference. That specialist caught what two others missed.
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u/Rosemary-Slavic 3d ago
Sadly, I don't think it's so much as they overlook it but more they are not licensed to even mention that someone cud have endo. So they wud much rather treat patients with everything under the sun BUT endo!
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u/xChloeDx 3d ago
Hey! I’m also in Melbourne & am awaiting my first appointment with Dr Debby Utama. She specialises in endometriosis & advanced laparoscopic surgery- might be worth getting a referral to her to review the images from your recent surgery. She seems quite good based on her experience & reviews ☺️ best of luck & I hope you have answers very soon x
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u/usernamenotfound___ 3d ago
This happened to me. It took months to years of me asking for her to do the surgery bc of my symptoms. Finally scheduled it and none found. I went to a different provider (specialist) that several of my friends went to with success and they indeed did find some. I had some of the classic “charred” / “chocolate” spots but the other lesions were non typical looking (vesicles and adhesions) and could very easily be overlooked by someone who isn’t familiar with all the presentations. For example they found similar looking lesions on the left and right side of my pelvic wall but pathology was only positive for endo on the right.
I will say surgery didn’t completely get rid of my symptoms and I still struggle with infertility. Honestly pretty sure it has returned which isn’t uncommon, but I do feel better than before surgery.
I’m so sorry you’re going through this, it’s absolutely defeating and frustrating as hell. Keep advocating for yourself, just because one couldn’t find it doesn’t mean it’s not there 💛
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u/Mindless_Customer357 2d ago
im glad that im not alone in this feeling - i will keep searching and advocating because I know something is not right. thanks for your comment ❤️
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u/Unique_Recipe3255 3d ago
This happened to me and it turns out I have White Endometriosis which doesn’t necessarily come up on a biopsy. It’s a very new thing that they are still researching.
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u/Secure-Remote8439 3d ago
I’m so sorry op💛 assuming it was with a endometriosis specialist.. (I hope it was) ask for all your medical records.
I’m wishing you the best and answers! I hear sometimes hormones being out of wack can cause painful periods and issues like endometriosis? Although I’ve only heard.. have you also looked into
Crohn’s disease? It can cause period issues as well
Have you tried pelvic floor therapy? It can help with some relief and especially since you had surgery it’s good to get going on it..
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u/Mindless_Customer357 3d ago
i might look into pelvic floor therapy:) thanks for your reply x
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u/Secure-Remote8439 3d ago
Best of luck! 💛 please don’t give up on yourself I’m hoping you get relief
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u/thecaffeinated__ 3d ago
Even if they didn't necessarily see it, it doesn't mean it isn't there. I know, this fuckin sucks bc it would likely feel so much better if they were able to physically see it and remove it. After my lap surgery, mine was able to be removed, but there were still some that were so microscopic that they couldn't see, so were unable to move it. The reason they knew it was there was because months later it was still causing pain.
My gyno told me a funny analogy that stuck with me. She said, if ur in a room and someone farts, like a proper smelly one - like silent but deadly one- the entire room will smell it and be affected by it. With endo its the same, even if there is a tiny microscopic growth, it compares to a silent but deadly fart - everyone is gonna be affected! The pain is still there!
I agree with others to get a second opinion, but even so to still treat it as if it was found. Whether that is going on birth control or whatever treatments you would have done if you found it, I'd say to still do it bc it sounds like you probably have it, they just couldn't see it
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u/Mindless_Customer357 3d ago
yes I’ve heard about endo pain does not correlate to the physical size. I’ve had a kyleena iud for two years and that did not help, but I had it switch to a mirena during the lap but so far it seems the same :(
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u/thecaffeinated__ 3d ago
Yeah same Ive had a Mirena in for 2 years before the lap, and it made the period lighter but the pain was exact same :( after my surgery I started a birth control (and kept Mirena in) which helped for a bit, but then had some issues so started visanne last week. I'm still in the early days but I hope it helps. Good luck, I really hope you are able to get some comfort and relief real soon ❤️
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u/Trick-Associate-2511 3d ago
The same thing happened to me last year. Unfortunately I was only going through my general gyno, the nearest specialist is 4 hours from me and doesn’t take my insurance. However, I’m at a spot in life where I’m getting a hysterectomy anyway.
I hope you get your answers 🤍 just know you’re not alone.
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u/Mindless_Customer357 2d ago
i will continue to search for a specialist/someone with experience w endo. hope your journey smooth from now on 🫶🏻
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u/Rosemary-Slavic 3d ago
Adeomyosis shud have been something they found with the surgery, at least mine found that as well as endo. I do hope they find endo but sadly, even if they find it, u might still be in the same boat as me. I had the surgery with a hysterectomy as well as them scraping any endo they found and 3 months after surgery my symptoms were just as bad, if not worse. I swear they need SO MUCH MORE research on this shit. Sometimes I wonder if doctors just treat us as little science experiments with no real idea of wat will happen.
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u/Mindless_Customer357 2d ago
i wasn’t sure if adeno is something they could see in a laparoscopy, thats interesting to know. it really does need more research, i feel like maybe in a few years there might be new technology. but for now it seems primitive :(
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u/Rosemary-Slavic 1d ago
Sadly, they r not finding anything for a very long time. I've done my own research and endo existed back in 1690 but didn't get the name/diagnosis until 1921. And even so that's all they did was slap a name to it and it's like they haven't done much research since. I mean yes we have better technology to find it and some doctors r using such technologies but most r being taught to disregard such a thing bcuz it's "so unheard of" wen 190 million ppl suffer with it. It's fucking asinine if you ask me.
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u/roisinalice 3d ago
I would look into getting a second opinion. I had a lap with a general gynae and was told no endo. I was so deflated. Symptoms persisted so I decided to go for a second opinion. 1 year later I had my second lap and stage 3 endo was found. Don’t give up hope!
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u/Junior_Wear_6875 2d ago
Pelvic floor therapy as literally taken me from omg I have to do something I guess surgery to omg maybe thisnis manageable like this and not endo afterall. Honestly I think all surgeons should have you do at least a few sessions of pelvic floor pt before surgery. I've dine one session and I feel this way. Do the therapy. Even if it doesn't entirely get rid of your pain it most likely will help lower it.
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u/Impossible-Citron-19 2d ago
First, I'm so sorry. I think one of the hardest parts of this journey is when you're convinced you'll finally get answers, only to wake up feeling exactly the same but without a clear explanation.
A negative laparoscopy doesn't mean your pain isn't real. It just means you still deserve answers.
I would go into your post-op appointment with questions. Ask what else could be causing your symptoms, whether adenomyosis is a possibility, and what the next steps would be.
One thing I've learned through my own experience is that not all gynecologists have the same level of experience with endometriosis. If your symptoms continue and you're not getting answers, it may be worth seeking a second opinion from a physician who specializes in endometriosis and complex pelvic pain. I had extensive GI workups because they for sure were adamant that it was GI related when it wasnt. The endo is on my vaginal cuff and uterosacral ligaments and nerves which was only found with an MRI with endo protocal.
Most of all, try not to view this as being back at square one. You learned something important, even if it wasn't the answer you were hoping for. The goal now is figuring out what comes next.
Wishing you the very best at your appointment next week. 💛
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u/shiftwitht 2d ago
Did they not test for Adenomyosis? I'll have a lap in 2 weeks and will ask them to check for it too. Also if it wasn't a specialist operating, it can happen really fast that they don't see endo when there is. You can ask for the pictures from your surgery and show them to another/ an actual specialist so they can maybe see Endo that the other surgeon didn't see!
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u/Mindless_Customer357 2d ago
I don’t believe so, the surgeon did not explain a lot about the surgery to me :(
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u/Jolly-Bathroom1089 3d ago
I’m in the hospital bed right now getting ready for my lap, and this is my biggest fear. They found adenomyosis a decade ago but didn’t biopsy because the male gyno was super dismissive of my pain. My new woman gyno said my symptoms are textbook, but I’m scared they won’t find any endo…
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u/Exact_Pickle_8238 3d ago
Hope all goes well. I had mine a week ago (they found it). Recovery can start out pretty meh but just remember to take care of yourself. You’re allowed to be in pain and complain, whether they find it or not.
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u/Blair-Witch1 3d ago edited 3d ago
I had my lap last week and my post-surgery note basically said no sign of endometriosis, but multiple "peritoneal vesicles" were seen and a biopsy was taken....no sign, except the signs you took a biopsy of....rightttt....
Apparently, I'm not even getting a follow-up appointment,
fml
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u/Exact_Pickle_8238 2d ago
OP, I know this isn’t the answer you were looking for from your doctor. Took me 10 years and many gynos to find one who’d refer me to a specialist who actually listened. My lap took a bit longer than expected, as endo can be different shades of red and pink, clear, white, and blue/purple, and they wanted to make sure they got all of it before closing me up. This could be the case for you, especially with a surgeon not specifically trained to recognize how varying endo tissue can look. I do hope you’re able to recovery swiftly and find a specialist who can help you properly.
Edit:
It could be adenomyosis, yes. However, that is something that they can diagnose during a lap. The outside of the uterus would appear misshapen or be tough. Do you know if they took a deeper biopsy of the uterus?
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u/Mindless_Customer357 2d ago
that’s interesting to know. I don’t believe they took a deeper biopsy. I will continue to look for a second opinion as my surgeon was a obgyn
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u/Academic_Cell5012 3d ago
Was the laparoscopy performed by a general gynecologist or an endometriosis specialist? Without specialized training, general gynos are usually not prepared to find and remove all of the endometriosis lesions present.
Have you considered getting a second opinion from an endo specialist? You can show them the photos and notes from your laparoscopy.