Abdominal hysterectomy to treat adenomyosis & Endo - anyone have experience to share?

[Username12345678]

Hi,

Hope someone has similar experience and could help me today. I had an unexpected call with my consultant yesterday who was trying to reach patients due to cancellations. I was diagnosed years ago with stage 2/3 widespread Endo and since then adenomyosis. I've tried most treatments and finally found that Prostap worked as it stopped my periods etc. However as its not recommended for long term use (I'm 44 and had 18 months of treatment) I opted to try the mirena. Fast forward a year, and the periods, are back, longer than ever and I'm back to back pain, headaches, cramps spotting etc. As I wasn't expecting the call from my consultant I wasn't prepared for her suggestion that the best next step would be Abdominal hysterectomy to remove the uterus (leaving the ovaries) and back to prostap in the meantime. This has thrown me a bit. I have full confidence in my consultant, she's a straight talker and for me is the first person to give me hope and answers. However the hysterectomy is such a big step (with no going back) so I'd appreciate any thoughts from ladies who've experienced similar. I should also add that I lost my mum 15 months ago and this situation is really highlighting my loss. If only I could speak to her, I'm sure I'd feel better.

[AllthatGlitters]

Hi. So sorry for the loss of your mum. I am the same. My next step is hysterectomy. A few days ago I started a thread about it too, maybe have a look.

It’s such a big decision isn’t it. I also have both conditions like you but I believe if you have a hysterectomy, you will still get endometriosis pain.

Why are they saying you need open surgery? I was told vaginally or open if there are complications in the surgery xx

[Username12345678 in reply to AllthatGlitters]

Thank you for replying.

I was told it wouldn’t be open (keyhole I think) and just the uterus. I guess from my symptoms that my doc feels that will certainly help.

I know from a previous lap that I had widespread endo and I had to have my appendix removed as it was being crushed by the endo so I guess it’s likely that it won’t completely eradicate it.

I’ll definitely take a look at the thread, thank you.

Are you on Prostap as you wait for the op?

[AllthatGlitters in reply to Username12345678]

Hi I am currently taking northusterone as trying to stop my bleeding as bled for over a year now without a break. Nothing seems to stop it as also on the pill and tried tranexamic acid. Not on the list yet for a hysterectomy as just had endometrial ablation x

[dawntildusk]

hiya, i had a total laproscopic hysterectomy when i was 37. they removed everything except one ovary and also did excision of endo at the same time. i have stage 4 endo, which was also on my pelvic wall, uterosacral ligaments, and ureters. i also had adenomyosis and pelvic congestion syndrome, and this was my third op in 3 years. I too had Prostap twice before this. Hysterectomy is a huge decision, and originally my surgeon wanted to put it off until i was at least 40 but my symptoms and health couldnt hold off any longer. It isnt always a solution, and i am mindful that it is likely to rear its head again, but for me the hyster gave me my life back. it is a hard recovery but it was worth it for me. i do have moments when i feel a little sad, but thats normal. my uterus had a lot to answer for. Im sorry that you dont have your mum to talk to but i have found forums like this have helped me through some of my darkest days. The members are very supportive, and we're are all on the same page. Any questions just ask x

[Username12345678 in reply to dawntildusk]

Thank you for replying. My consultant suggested that following the hysterectomy I could expect to feel similar to how I did whilst taking Prostap. Was it like that for you?

[dawntildusk in reply to Username12345678]

To be fair my experience of Prostap wasnt a great one as it didnt eradicate all my symptoms and the side effects were quite bad. I havent gone into menopause yet as i still have the ovary. They were going to take it all but decided last minute to leave it and in fairness it was a godsend. The instant relief of the chronic pain and heavy bleeding was such a weight lifted. Its surprising how much it had affected my mental state as well as physical.

[Username12345678 in reply to dawntildusk]

I hear you. We end up just getting so used to the pain and managing that it’s not until you actually get some relief that you realise just how much you’ve been dealing with. Glad to hear you had a positive outcome. Thanks for sharing x

[dawntildusk in reply to Username12345678]

If you do go ahead please ensure that they do full excision of endo at the same time too. This will give you the best possible long term outcome. x

[Username12345678 in reply to dawntildusk]

Good advice. Thank you 😊