HRT / HYSTERECTOMY & OOPHORECTOMY FOR END... - Endometriosis UK

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HRT / HYSTERECTOMY & OOPHORECTOMY FOR ENDOMETRIOSIS

laf1977 profile image
11 Replies

Hello! I'm 42 and having a total hysterectomy in April and about to start prostrap with tibolone. 4 surgeries so far, last was in April and diagnosed with stage 3 endometriosis, now with many bladder complications and suspected thoracic involvement but nothing being doing for lung and bladder issues. So Just looking for any advice on whether to take HRT post hysterectomy as very conflicting information. I'm nervous to go through with such a big op only to have the endo return, especially if there's no formal diagnosis of thoracic involvement and the issues with my bladder are left unresolved. Any suggestions and experience of similar would be much appreciated. Thank you ;)

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laf1977
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11 Replies
Sweetyassi profile image
Sweetyassi

Hi there,

I had stage 4 endo, had hysterectomy done in my 30's then 2 years ago got both my ovaries removed. I took tibolone HRT tablets for a while and it brought back my endo, I regretted ever taking it. For me, because my endo was very aggressive and came back quickly after every operation that I had, I have learnt that HRT isn't suitable for me.

Please do your research, ask loads of questions to your gp and consultant, everyone is different and meds work differently to everyone. For me I wish I never took HRT I should have listened to my own instincts and I didn't.

Just to let you know because surgeon don't mention this, but when you have a long surgery there is a risk factor of developing compartment syndrome in the legs or arms. I didn't know this, and I have had multiple operation in the past. When I went to remove endo and adhesions and both ovaries I developed compartment syndrome in my right calf and and to have 4 operation within a week for my leg. I'm not trying to scare you but I think surgeons should tell you that it can happen like they warn you about other things that might go wrong.

Sweety.

laf1977 profile image
laf1977 in reply to Sweetyassi

Thanks for you reply, interesting to read. The prostap and HRT has been seagulls and I’m refusing to have anymore injections. I’m just having the hysterectomy and will judge HTR afterwards. I hope you’re doing ok x

Sweetyassi profile image
Sweetyassi in reply to laf1977

Hi, just a reminder that hysterectomy isn't a cure for endometriosis. Hope your operation goes well and it works for you.

Sweety.

laf1977 profile image
laf1977 in reply to Sweetyassi

Yes I know! I've done lots of research - thank you! But I also have adenomyosis, which should help significantly. Some women say having a hysterectomy is the best thing they ever did and you just get to a point where you're willing to take the risk as the pain is simply unmanageable.

Sweetyassi profile image
Sweetyassi in reply to laf1977

Hi,

Yes I was at that point where I just wanted the pains to stop, I was suicidal back then and I took a big risk on having a hysterectomy done but that didn't help me at all. The endo still came back.

Sweety

Why are you getting an hysterectomy?? The uterus has nothing to do with Endo, unless you have Adenomyosis as well? It might be wiser to look for a second opinion, with a surgeon that does wide excision?

laf1977 profile image
laf1977 in reply to

Yes I have both adenonyosis and endo and having ovaries removed!

in reply to laf1977

Ok... that's a big thing... I'm trying to keep everything and having the Endo and adhesions excised... I'm getting a nerve resection for the Adeno. No hormones for me... Good luck x

Apple88 profile image
Apple88

I had a total abdominal hysterectomy with BSO when I was 43. After the op it was found I had adenomyosis as well as endo. I have used HRT oestrogen patches since then (past 3 years) and have been fine with it. No recurrence of endo and all previous issues gone. No regrets for me. Not sure if that’s helpful but just wanted to say that for me it was definitely the right thing to do.

Good luck!

laf1977 profile image
laf1977 in reply to Apple88

I am so pleased to hear it helped you! I’m hopeful it will have a similar result for me! Everything crossed ;) thanks for your reply x

Natasha70 profile image
Natasha70

I’m having similar thing how long did you wait for operation

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