u/Familiar-Tip2974

Hello! I posted in here a couple weeks ago about missing endo on emergency diagnostic lap and I was really grateful to those who responded. Essentially I had an emergency lap last year due to ovarian torsion. I had a 5cm dermoid that started to become hemorrhagic (which is about as painful as it sounds) so they removed it laparoscopically and untwisted my ovary. In the weeks leading up to the torsion I was in and out of the ER and my gyno later told me it was due to my ovary torsing and detorsing intermittently which makes sense.

While the same level of excruciating torsion pain hasn't returned (thankfully) I have experienced a lot of dull chronic one-sided pain on the same side where I had the original pain. I've been continuously told by gynecologists that dermoids don't cause pain unless they're very large and pressing on other organs which mine isn't. Yet I had pain for about a year before I was even diagnosed and that pain has continued after my detorsion/cystectomy surgery.

I've now had an MRI which has come back as saying I have an irregular shaped focus on my ovary. It's small, only 1.3cm in diameter, and it's hyperintense on imaging so it likely contains fat and is the residue of the dermoid - which I have been saying since shortly after my surgery, but no one would listen to me. I haven't had my gynecologist appt just yet, so I'll see what she says. I wonder if she'll say that due to my history of torsion they will prioritize removing it, but I genuinely think she might also say that we should do watchful waiting despite my level of pain (which has now prompted my primary doctor giving me stronger pain meds, a higher dose of codeine/paracetamol).

My other concern is that the gyno might still attribute my pain to something else which she did previously. And I really don't know. Would the remnants of a teratoma truly cause the level of pain I'm in when it's so damn small? Or is there a chance that there could be endo behind my ovary that is causing that level of pain? Because I am seriously considering salpingo-oopherectomy so I don't have to worry about this damn dermoid recurring in the future. And I do wonder if maybe getting rid of the ovary will reveal potential endo or a better explanation about my pain levels, because if my gyno is to be believed (and to be fair what I've read of dermoids in general) a dermoid in itself shouldn't cause this level of pain.

Also just to note. After my surgery they did histology on the dermoid and a load of fragments. They noted there was a lot of friable tissue and in the surgery report they noted my ovary was 7cm and hemorrhagic so I'm not even entirely sure if my ovary was hemorrhagic or the cyst was, and I know the chances of dermoids rupturing are very low (1%-2%). Maybe the reason for my current pain is because of inflammation due to residual tissue especially if it's fatty in content?

Maybe I'm just going on a wild goose chase regarding the endo. I've had 2 laps now and admittedly 1 was an emergency so it could have been missed there, but the first one I had didn't show any endo (though as I mentioned the gyno who performed that surgery had a fertility specialty not endo). I imagine I won't be operated on by an endo specialist and won't be able to advocate for that, but given I have a lot of symptoms of endo I really do wonder if I might have it.

Sorry this is all a lot! I would like to know if anyone's had similar experiences say in oopherectomy revealing endo behind it, or where you've had a dermoid removed and then had residual tissue was left behind. What did you do with it?

I'm still new to Reddit so I'm not sure if I'm doing this correctly - if I have made any mistakes please tell me.

A while back I had ovarian torsion. I had clean ultrasounds for ages where my gyno told me it was a good thing that they couldn't visualise my ovaries (lmao) because if I did have any cysts or problems they would have shown up. I can't tolerate transvaginal (which btw I still don't fully understand bc I can tolerate more fun stuff up there if you know what I mean) so I demanded an MRI which lo and behold found a dermoid cyst, just under the threshold where torsion is around 15-20% likely to happen. Not long after I got that diagnosis I started getting really bad one-sided abdo pain but despite multiple visits to the ER the drs kept saying it was literally anything else - kidney infections, UTIs, kidney stones. Finally they diagnosed torsion after my 6th visit where I basically just Ubered to the hospital and promptly collapsed screaming. Without a doubt the worst pain of my life.

They managed to untwist my ovary and removed the cyst, but months post surgery I'm still struggling with the same one-sided abdo pain - not as bad, mind, but still significant enough that I need almost daily heat pads and I have marks on my skin to prove it. I take a lot of OTC codeine/paracetamol and NSAIDs and it definitely gets worse during and leading up to periods.

The reason I'm posting here is that I've long since suspected endometriosis. I've had really bad period pain for as long as I can remember as well as gastro symptoms for many years (tmi but I poop at least 5 times a day). I've previously had a diagnostic lap that didn't find anything except polycystic ovaries. I read the report on my detorsion surgery and it said no abnormality detected in the liver, pouch of Douglas, other ovary and uterus, so based on this my gyno has said that if I have endo it's so "mild" that it can't be seen on lap therefore not able to be treated surgically. She's said the only option is birth control and if I refuse to go on that (which I have bc I've been on it before and had really bad side effects) and my latest MRI comes back normal then she's gonna refer me to a pain clinic and treat it as unexplained pain. Aka she's gonna say it's all in my head.

She's also a urogynecologist and I've had urinary symptoms since last year, so she's saying the pain I've been having could just be bc of UTIs that weren't adequately treated (as typically antibiotic courses are pretty short for UTIs where I am). So endo isn't her speciality, and more importantly she just has zero bedside manner with me and is straight up rude and dismissive when I try to explain my symptoms and their impact on my everyday life. I am currently taking meds for the urinary stuff and tbh they haven't really been helping, I'm still peeing during the night which at my age I shouldn't be (30s).

Here's the thing. When I had that emergency and my ovary was shades of red and black and hemorrhaging (literally I was unlucky enough to be in the 2-4% of people with a hemorrhagic dermoid cyst as well as a torsed ovary) my thinking is that the surgeon was probably more concerned with saving my ovary and removing the cyst on there, rather than taking an in depth look at my uterus or other areas for endo. I'm wondering if the emergency situation meant it was possible for them to miss endo, especially as I don't believe the surgeons were endo specialists and in theory endo lesions can be really subtle if you don't know what to look for?

Anyway this is just my very elongated way of asking y'all if anyone has experience with something similar - having an emergency or unrelated lap surgery for gyno reasons and the possibility that endo could be missed? Any suggestions on how I should go about advocating for myself in this situation? My MRI report is due to come in soon and I'm hoping that will give me some answers, but it could very well come back clean the way my ultrasounds post surgery have been, yet I'm still dealing with a lot of pain that they can't get to the bottom of.

I also took a long long time to recover from the emergency surgery even though it was only a lap, probably because of a lot of traumatic things that happened in the ER and afterwards. I obviously don't want to have yet another surgery but if it can help with my symptoms and I don't have to be put on medication that gives me unpleasant side effects, I'll take it. There's also the chance that this pain could be due to incomplete cyst removal (a possibility maybe given the cyst was hemorrhagic?) and therefore the cyst has grown back, in which case I'd need another surgery eventually esp with my history of torsion. But my gyno doesn't want to order a diagnostic lap to rule out endo at this stage given I only had a lap last year and they didn't find anything endo related. So I'm really torn about what to do next and obviously a lot hinges on the MRI results - I very much doubt my MRI will show anything definitive endo wise though. Previous MRIs I've had have shown my ovaries being slightly adhered to my pouch of Douglas but I never fully understood what that even meant.

Thank you guys, I've been lurking on this sub for a while but didn't really have the courage to post, I would love to hear if anyone's had a similar experience.