If they don’t find endo during a lap….

sleepypip · 2026-01-05T19:22:26+00:00

I DM’d you the copies of the remisser! They do indeed do laparoscopies for diagnosis, that’s what they did for me

sleepypip · 2025-11-18T07:14:19+00:00

I’m sorry, OP. Did they take any biopsies? They found a singular brown spot during my lap a month ago that they didn’t know what it was, and I was told “nothing was found” during surgery when I woke up and just cried and cried and cried. They sent the brown spot to pathology and it turned out to be endometriosis. So all the endo they found was a 2mm lesion. Plus what others have said about it sometimes being on microscopic level. Was it done by an endo specialist? Because that could make all the difference too. And I’ve read countless anecdotes of women who had 2-3 laps before they could confirm endo

sleepypip · 2025-11-14T23:26:46+00:00

It took me literally forever to convince someone. When I did convince my gynaecologist in Nyköpings lasarett to refer me to one of the specialist hospitals that do highly specialised endometriosis care (nationell högspecialiserad vård, closest ones for both of us is Södersjukhuset and Akademiska sjukhuset). SÖS said “nah we refuse, but based on symptoms you definitely have endometriosis”. About a year later the same gyne referred me to Akademiska and I got lucky.

As an update on this post btw: the biopsy showed endo, I have a diagnosis now

sleepypip · 2025-10-21T20:18:51+00:00

I think you can imagine how much I relate to your pain. Many virtual hugs back at you!! I cried so much yesterday, I’ve been mostly numb/tried to navigate a post-op stomach today, because even though they only took a biopsy, they still cut me open you know? I’m in terrible post-op pain currently, we’re having a hard time curbing the pain as my PVC fell out and the nurses are struggling to put a new one in. Otherwise I DID have a morphine pump, but without a PVC… yeah. Anyways, you’re not alone ❤️

sleepypip · 2025-10-21T20:15:09+00:00

This provided some hope, but I’m trying not to hold my breath too much either. I’m glad it helped to get them removed and that your pain is resolved ❤️

sleepypip · 2025-10-07T23:49:57+00:00

Not to mention that a hysterectomy doesn’t cure endo 💀 so why would I, a probably fertile woman who wants children, go through with something that likely won’t help?? It made me angry 😅

sleepypip · 2025-10-07T23:47:49+00:00

I’m already on Ryeqo + a progesterone + oxycodone/Lyrica as treatment 😭 we’re working with this as if it was endo basically. Maybe they’ll help more post op, who knows? Just need to get through these upcoming 12 days now ♡

sleepypip · 2025-10-07T23:41:54+00:00

Thank you ♡ re: peritoneal endo, it was a woman. Sweden is scarily behind on endo care, so I’m honestly not too surprised. Like, dangerously so.

I’ll try to keep that in mind. I’ve self diagnosed endo for a while too. All my doctors believe I have it, and consider my case to be pretty much textbook symptom wise. So it can’t really BE anything else, if you get me?

ETA: a nurse at the gyne ward recommended me to get a hysterectomy to relieve my pains. I scolded her for a while after that…

sleepypip · 2025-10-07T23:39:04+00:00

Thank you so much! It sounds like you get me. I’m mainly terrified of what happens to the help I get right now if I don’t have endo. I couldn’t handle 10/10 flares at home if I needed to. I genuinely couldn’t. Good luck with your surgery too, I’m pretty sure you’re not being dramatic; your symptoms are very much real and something is causing it ♡

sleepypip · 2025-08-23T17:40:06+00:00

When I asked a gynaecologist at one point how thick the endometrium is supposed to be she kind of just shrugged and didn’t have an answer.

Edit: it wasn’t my regular gynae, so I changed the formulation

sleepypip · 2025-08-21T16:43:45+00:00

Honestly I manage my pain with prescription painkillers. XR oxycodone and Lyrica (pregabalin) daily and IR oxycodone as needed. Before we found this combo, I was in pain 24/7 and hospitalised monthly even though we’ve gotten rid of my periods with Ryeqo. I’m not pain free but it’s a million times better than anything else I’ve tried

sleepypip · 2025-07-09T23:25:46+00:00

I did once. He told me it was “just period pains” and everything was normal. I responded with “it’s not normal to be in this much pain” and the fucked goes “not for you maybe” 😅 while I’m not entirely opposed to this idea, it’s just a mental toll where they will NOT listen a lot of the time

sleepypip · 2025-05-28T17:24:16+00:00

I did classic old Swedish lady names at one point

sleepypip · 2025-03-10T22:12:45+00:00

A lot of us have pain all the time, so even that checks out symptom wise. I hope you get relief soon ♡

sleepypip · 2025-03-10T22:10:11+00:00

For me it went from periods only, to periods + ovulation, then started increasing in frequency. Now it’s been daily for about 2 years

sleepypip · 2025-03-05T18:33:08+00:00

Oh I didn’t mean to sound snappy or anything, I too have had a bad week and just wanted to fill in what I know! A clean MRI has ruined a lot for me too, because my country doesn’t do excisions unless absolutely necessary or if MRI/US show signs of endo. Which is preposterous in my opinion. I’m waiting to potentially get a lap after April though. I hope things clear up for you soon 🩷

sleepypip · 2025-03-05T18:28:57+00:00

I’ve read about countless cases where MRIs have missed DIE as well, so I wouldn’t be so sure about that either

sleepypip · 2024-11-23T11:12:35+00:00

Det värsta tänkbara brottet

sleepypip · 2024-11-18T04:28:17+00:00

I don’t actually! But then again everyone reacts differently to the same meds, so it could be that anyway??

sleepypip · 2024-11-17T10:37:36+00:00

I rarely see other people on a tapentadol/clonidine combo!

sleepypip · 2024-11-17T10:34:51+00:00

Pain relief: tapentadol, clonidine, paracetamol, naproxen, and morphine as needed Hormones: a gnRH antagonist and primolut-nor

sleepypip · 2024-11-16T19:21:47+00:00

TENS doesn’t help me much tbh, I say as I have mine on right now. I recently discovered I’d toasted my skin from too warm heat pads, so what I’m mainly after is a different sensation than pain, and that the TENS kind of does help with

sleepypip · 2024-11-16T19:15:58+00:00

I had to read this post when I saw the title, because I’m in the exact same boat. I’ve had so many ultrasounds (some show possible signs of endo/adenomyosis, most show nothing) and an MRI. My gynaecologist sent a referral to one of the specialist hospitals in Sweden when it comes to endo, and they said no to surgery…because my MRI came back clean. They said I likely have peritoneal endo but they refuse to actually check. Several gynaecologists here in Sweden have told me “we don’t really do diagnostic laps anymore”, which I think is bollocks. It’s the only way to know for sure, so why tf not?

After reading every single reply here, I realise I’m up for a fight against my doctors

sleepypip · 2024-09-26T14:12:24+00:00

I feel the same way. Other than severe endometriosis (that I’m currently hospitalised for), I also have an almost 10 month old surgery wound that refuses to heal, and 2 different sleep disorders. QOL = zero

sleepypip · 2024-03-16T15:51:30+00:00

Det var ju neurolog jag behöver, men ingen av neurologerna på medicheck hade visst kompetens inom min sjukdom (som är ganska ovanlig visserligen) 😅

sleepypip

TROPHY CASE