endometriosis and hysterectomy

[Prettythings1]

Hello. I very much want a hysterectomy as I have suffered with endometriosis for years I feel like this would be the answer.

I have been on prostap injections for nine months this has reduced the pain a lot as it is completely stop my periods but I am not a fan of the hormone fluctuations which caused me lots of stress

the bloating, and my Endo belly has got much worse

The gynaecologist seems to be happy to let me continue on these injections, even though I am suffering as a hysterectomy is not an option until I am a lot older. Apparently I’m 37

I have had all the children I want to have.

I have a complex medical history, which means I cannot have the mini pill, the implant or the coil, which are usually other avenues to go down to manage endometriosis symptoms

my question is how can I convince the gynaecologist when I see them in a few months to give me a hysterectomy I need to build some kind of case

Thanks

[Gay333]

I feel your pain been asking for an hysterectomy since I was in my 20s. Had my 3rd operation in November for endometriosis. I’m now 41. Pain is starting to get bad again. And I still can’t get an hysterectomy at 41. I thought it should be up to us. But I was told an hysterectomy is not a cure for endometriosis

[Prettythings1 in reply to Gay333]

I have been told the same. It’s so frustrating.

what do they suggest for treatment options instead? X

[Emm10]

I’m so sorry to hear that you are having a tough time and not being listened to by your gynaecologist. I too had years and years of being fobbed off, before I decided to go private in December 2022 (through my husband’s insurance). The consultant was incredible and really listened to everything I said, went through all of my notes thoroughly and as I had explored all of the medical avenues (coil, pills etc) he suggested a total hysterectomy with bilateral salpingo-oophorectomy as I am 38 and my children are 9 and 11 and I no longer want any more children. I had my surgery 2 days ago which was really successful and he removed all traces of Endo from my other organs too (it was most severe on my bladder) - I am in quite a bit of pain but so relieved it is done and dusted and hopefully the start of a better quality of life for me. I would suggest writing out a list of all of your symptoms, when they occur and how often so it’s all very clear in black and white - I had 2 sheets of A4 when I went to my appointments and took copies of them so the consultant / gp could keep copies as well - I also had a list of all treatments that I had tried and the results so they could see that they hadn’t worked as expected. Hope this helps, and I do hope you have some success at your next appointment xx

[Prettythings1 in reply to Emm10]

Thank you so much for your reply. I will definitely write everything down before I go.

I have tried going down the private route because of my complex medical history. I need to have the operation in a hospital that has an intensive care unit. Apparently just in case something goes wrong in the surgery they won’t risk operating on me

I just feel like I’m going to be stuck in-this limbo for the next 20 years

[Bubblepoppy]

Hi I had a abdominal hysterectomy age 39 for my endo they left the overies which I was told would be taken out also, it did take me a long time to get there though, I kept nagging and nagging the only time I was told yes was when I saw a endometriosis specialist fast forward to now I'm 40 still in pain with the endometriosis waiting on another referral back to square one the waiting game it's really annoying I need a jet wash in there and some really good weed killer as they describe it like a weed just keeps coming back when you don't want it to, so my answer to you is keep nagging xx

[Prettythings1 in reply to Bubblepoppy]

Thank you so much for your reply. I’m so sorry it keeps coming back x

[Chooklady]

Sorry to hear your frustration. I was 36 years old 12 years ago and offered a hysterectomy by my gynea without even asking, she just blurted it out! I had the lap to investigate instead and they found a small amount of endo and 2 x 5cm cysts on my right ovary. These were ablated and aspirated and it's only now that I'm thinking that my symptoms have returned.

I'm kind of glad that I didn't go through with such a life changing op back then. In fact I declined because of work and family commitments and they didn't give me all the info on why I should have it removed.

Maybe there is an option for a second opinion? Have you looked at an endo specialist treatment where it is incised and not just ablated?

[Prettythings1 in reply to Chooklady]

Thank you very much for your reply, I had a second opinion from a private clinic who would not treat me because of my past medical history, as I’m not an easy case.

Ive tried to see the doctor my GP who told me over the phone that they could not prescribe HRT because of my medical history, and the only option for me is counselling (as this could help with my frustration of not getting HRT)

Ive since asked for another appointment with a different doctor 4 weeks time though.

Do you regret your hysterectomy? X

[Chooklady in reply to Prettythings1]

I understand, this sounds like a very confusing situation to be in. I hope that the appointment goes well with the second doctor.

I didn't have a hysterectomy in the end, I didn't have any information to go on and went with an investigative lap to remove the endo/cysts.

[Prettythings1 in reply to Chooklady]

thanks it sounds like you made the correct decision for you at the time

I don’t know whether a hysterectomy would be the right choice for me if it is offered or not Alternatively, I do not want to be on prostapinjections for 10 years. So I think I’m leaning more towards a hysterectomy. X