had my post op follow up yesterday - Endometriosis UK

Endometriosis UK

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had my post op follow up yesterday

4 Replies

Everything went really well, the consultant was very pleased with how things are going. I've been given tibolone (livial) to try for a couple of months initially, but he said there were better forms of HRT available and said that I could switch to oestrogen patches in a few weeks, which in his opinion are better than tibolone. I've now been discharged by the hospital and won't have to go back unless I start to have further problems (in which case they said to get in touch with them and they will see me no questions asked).

I'm feeling really well - I can't remember the last time I needed painkillers. Sex doesn't hurt any more. My bowel issues (chronic constipation) are slowly improving and I'm not needing laxatives every day. I know there is a possibility that the disease might return in the future but for now I'm feeling very positive and pleased with my decision to have the surgery.

The key thing I would say, especially if you have severe disease and a hysterectomy is being offered, is to really be aware quite how serious this surgery is and make sure that you see the best possible surgeon, even if it means waiting a bit longer (and I know how hard this is). I had my surgery at the big bsge centre in London and I'm really pleased with the outcome.

Take care everyone. x.

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tmc182 profile image
tmc182

That's great news. Thanks for the update. Can ask did Prostap (Or similar) make an improvement in symptoms for you? For me the Prostap is wonderful, but my consultant is still saying I'm too young for a hysterectomy, despite me trying everything else. Prostap is working, my family is complete (and I've been sterilised, so no questions there), if i could stay on Prostap I would!!

I hope it is the end of your problems for good :)

in reply totmc182

It's a tricky question to answer really - I had 5 months of decapeptyl (which is similar to prostap) last year with HRT addback. I still had periods and it was abandoned just after the 5th injection because I ended up in A&E with a massive pain flare. I had 9 weeks of prostap without HRT prior to the surgery and although this did stop the bleeding, I still had cyclical pain. I did see some improvement with it but I wasn't pain free on it as I know a lot of women are however this surgery has really made a difference. Everything was so stuck together that I guess there was only so much the prostap could do to help.

I had initially been told I would be able to stay on the decapeptyl longer term if it had worked and i had been able to tolerate the HRT, but obviously this didn't happen so the surgery was pretty much my only remaining option.

tmc182 profile image
tmc182 in reply to

I guessed it wouldn't be straightforward, nothing is with endo, but thank you for replying. Good luck with the HRT, and best wishes for a pain free future.

I'm pleased you're doing well 😊👍🏻

Thats great news xxx

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