Recent surgery surprise!

[Kittie5117]

Hello everyone,

I wanted to give an update on my situation, as I have been posting on here with 101 questions over the past 3 years!

I strongly believed that I had Endometriosis until recent days. I will try to summarise my situation - age 40, living in Scotland, issues for past 3 years with very heavy period bleeding, pelvic pain. Hysteroscopy for suspected polyp, nothing found. Tried on various hormones to manage symptoms (Norethisterone, Provera). Still heavy bleeding and pain like a cricket ball in my tummy. In past 9 months, pain in bowel, pain emptying bowel and bleeding. Checked for haemerrhoids/Colonoscopy but nothing inside the bowel.

I have been on a waiting list for a Hysterectomy for 2 years. Had the surgery last week. Had to get second operation to address post operative internal bleeding.

I have a lot of bruising from the ribs to my vagina and my abdomen is very swollen. The most interesting thing is that the surgeon did not find any Endometriosis inside of me!

Womb will be sent off for testing in the lab and I should get results. It is too soon to know if my longer term pain will be gone but I am hopeful that the "cricket ball" feeling has gone.

Does this experience sound familiar to anyone? Am wondering now if it will be diagnosed as Adenomyosis rather than Endo? Or could it be something else?

Thanks in advance,

Kittie 5117

[Hoopy587]

Hey Kittie,

I’ve had something similar recently, but I have previously been diagnosed with stage 4 endo & had lots of previous surgeries for it. My last one was 2020 & removed lots of disease plus a tube & ovary. My pain returned quicker than normal, so after being on zoladex & waiting for surgery I had a hysterectomy on 1st March.

Despite the fact I had the exact same pain as my endo pain previously (I’ve had endo for 20+ years) they did not find any active endo in my surgery! & endo patches on my diaphragm left in my last surgery had gone. I’m left confused as I know my body & know my pain but wonder too if it’s Adenomyosis.

I really hope & pray for you that this does help your pain long term 🙏🏻 It’s horrible when you know you’ve had pain but then they don’t find anything & it makes you feel crazy! Xx

[Kittie5117 in reply to Hoopy587]

I agree Hoopy587, Probably the most difficult part of these health conditions is feeling that we aren't being believed, or that there is no single, obvious cause to blame!

I will post on here again once I get my results. If they come back "normal" I will be very confused!

Thanks

Kittie5117

[Hoopy587 in reply to Kittie5117]

Yes totally agree Kittie. It’s horrible when you feel you aren’t being believed or that there’s no obvious reason for your pain 🥺

I will do the same regarding my results. I hope we’re not both left confused.

Take care,

Emma x

[Kieraface]

could be adenomyosis. I have adenomyosis and I bleed really badly to the point I’m anaemic and have to take iron tablets. Been lucky that I haven’t need led a transfusion as yet. Bled for almost 12 months with only a few weeks out of the year when I didn’t bleed. Adeno is the evil twin sister of endo. Hopefully your hysterectomy will of cured the issues and the pathology comes back with answers for you x