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AIBU?

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Endometriosis

79 replies

SCeee · 23/08/2025 17:30

Hey,

I am feeling desperate and looking for guidance. For the last 3 months, I’ve been in agony with stomach bloating, lower abdominal pain, sharp lower back pain, heavy/clotty periods, nausea + vomiting, and exhaustion. I’m constipated for a few days then have explosive dihorrea the next. TMI but during my cycle my dihorrea is awful and so irratic. Had bloods done in May which showed low folate so thought maybe this was contributing to my symptoms. My period all my life has usually been regular and to the day, but for the last 3 months it’s been completely irregular and out of sync. It’s starting to affect everyday life - all month round. My stomach is so distended for my entire cycle, worsening during my period. I feel so sick, minimal appetite and just so exhausted by all this. The pain in my lower back and stomach is unbearable - sometimes I feel like I’m going to pass out. I’ve also tested my urine on 2 separate occasions which has shown blood in my urine but as per usual - GP’s don’t care. This was done prior to period starting so understand this could have caused traces of bloods.

I took matters into my own hands and booked a private ultrasound which showed nothing. Have had routine bloods done at GP (I’m a nurse, and believe the blood tests they’ve taken aren’t appropriate for my symptoms) which also came back normal. I’ve contact the GP constantly and all the can offer me is a telephone consultation in 3 weeks. I’m at my wits end, I’m in so much pain and feel so miserable - does this sound like endometriosis? Every single month it’s getting worse :( I have a 3 year old too and it’s breaking my heart that I don’t have the energy to be able to give him my all at the moment.

OP posts:
Shmoigel · 27/08/2025 20:24

This sounds exactly like my endo. It took until the age of 40 to be diagnosed.

hazelowens · 27/08/2025 20:34

TheLivelyViper · 27/08/2025 20:21

Just to say you can still have endometriosis tissue grow without periods, new research has found that endometriosis tissue can produce its own oestrogen and progesterone, as well as its own steroids, so can grow whenever.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11720315/?
https://www.jci.org/articles/view/188787/version/1/high-res-pdf/render.pdf?

You can also still get excision surgery if you're not pregnant (I haven't got kids and never want to have them, but endo and other conditions have disabled me it doesn't mean they can refuse to treat me in various ways including surgery). Perhaps file a complaint with the ICB or PALS because it can give them a kick up the but.

I did not know that you could still get endometriosis without periods, the surgeon that told me to get pregnant straight away it was 24 yrs ago so possibly the surgeon wasn't up to date on those things then.

I need to get my GP to listen to me again properly to get me seen by a gynae. Though I am waiting on a transvaginal scan so maybe I might get somewhere with that.

TheLivelyViper · 27/08/2025 20:37

hazelowens · 27/08/2025 20:34

I did not know that you could still get endometriosis without periods, the surgeon that told me to get pregnant straight away it was 24 yrs ago so possibly the surgeon wasn't up to date on those things then.

I need to get my GP to listen to me again properly to get me seen by a gynae. Though I am waiting on a transvaginal scan so maybe I might get somewhere with that.

Yes it is new research from the last 10ish years - so your surgeon was just going by the info at that point, definitely when you were 24, I don't think the research had gotten to that point.

Don't get me wrong, because you'd had excision you did have the best chance to get pregnant. See how the transvaginal scan goes, can you also get another MRI as well. How are you managed? Like meds etc, that sort of stuff.

hazelowens · 27/08/2025 20:43

TheLivelyViper · 27/08/2025 20:37

Yes it is new research from the last 10ish years - so your surgeon was just going by the info at that point, definitely when you were 24, I don't think the research had gotten to that point.

Don't get me wrong, because you'd had excision you did have the best chance to get pregnant. See how the transvaginal scan goes, can you also get another MRI as well. How are you managed? Like meds etc, that sort of stuff.

In the last year I have had 4 MRI 's but they were for my brain but I did have a full body CT scan that only showed lumps in my boobs which thankfully were just lumpy boobs. No one is interested in my fibromyalgia or FND unless they are just looking for something to blame for my broken body. I also have arthritis all over my body so I am not only sore but I snap crackle and pop when I move.

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