What do I do help?

[Metriosisgirl]

So I have already had a op last year 2018 to remove stage 4 Endo and cysts. I got pregnant soon after my op in 2019. My endo returned soon after stage 4, my ovaries are stuck together, one of my tubes is damaged, I have endo on my Bowel wall. I have a large vaginal nodule and endometriosis on my rectum. My dilemma is what do I do?

1. Have my ovaries removed and a hysterectomy and the endo on my bowel taken away?

2. Just have the endometriosis that’s there taken away leaving my organs

[Abbbb]

Hi metriosisgirl,

I would say it totally depends on whether you want more children.

I have 3 children and I had a total hysterectomy including ovaries and cervix in May 2019 due to rapid regrowth endometreosis. I couldn't cope in the constant pain anymore n wanted to be fit to look after my kids and to work. I also couldnt afford a laparoscopy every 6 months and the nhs waiting list was always at 18months.

I've had it, I'm happy ive had it. I still wanted another child but we have discussed adopting in a few years.

The HRT is tricky. Endometreosis feeds off estrogen, but estrogen creates new cells that we desperately need, so you will have to have a small dose of HRT. Very hard to get right, I'm not there yet myself.

And theres no getting away from the fact the endo could still come back, as there could be microscopic cells not visable to the eye left which eventually get enough estrogen to re-produce. And if course endo can create it's own supply of estrogen in the right conditions. So it also means sticking to the low inflammation endo diet to reduce chances of it coming back, forever.

I'm not goin to say it was easy but the OP was ok. I had it laparoscopic and vaginally.

I know it was right for me and I'm adjusting but it's a big thing. Considering the severity of your endo - me personally I think it's worth a shot. Stage 5 endo starts fusing bones together - there no real coming g back from that. I've heard people wheel chair bound, having dozens of operations including removing parts of the bowel and scraping other organs. That's why I made the decision I did. But it's so personal, every scenario is very unique.

Theres always a chance that one more laparoscopy to clear it all, combined with hormone suppressant could switch it off for you, for 5 even 10 years, at which point youd be closer to a natural menopause age and HRT would be less of an issue.

Sorry for ridiculously long reply, it's a hard decision and theres little info out there. Please check hystersisters, it's a US forum with absolutely everything you could ever want to know about having a hysterectomy and reality of living with it after. Please also PM me if you have any questions or want to discuss further. It's a tough decision for anyone at anytime, if theres anything I can do to help I'd be glad xxxx

[Metriosisgirl in reply to Abbbb]

Hi thanks for the reply. I have a few appts coming up one with a bowel specialist and another to see a gynaecologist to discuss what to do.

I don’t want to keep having op after op. I’m just really confused what to do. There seems to be loads happening.

Did you ever have any bleeding from your stools and did you have bowel endometriosis or any cysts?

I wasn’t aware that there was a stage 5 of endometriosis? Not heard of that before.

I am so exhausted at the moment. I have a 4 month old baby and just finding it hard.