Prostap and ME/CFS: Hello everyone... - Endometriosis UK

Endometriosis UK

51,572 members42,302 posts

Prostap and ME/CFS


Hello everyone,

Following my hysterectomy, with conservation of ovaries, and excision of 'visible' endo (at a BSGE Centre), I'm in worse pain than ever.

The surgeon seemed as disappointed as I am and has suggested a 3 month trial of Prostap before we consider removal of the ovaries, to see whether they are the cause directly/indirectly of the pain.

My ME/CFS symptoms have been gradually worsening since the op and I'm terrified of what the impact of the Prostap might be...

Does anyone have any experience of this please?

I realise everyone's different but it would be good to hear from someone who struggled with the same issue.

Many thanks x

4 Replies

Hi, I saw your post. Sorry to hear that surgery has not brought relief. How far along in the recovery are you? I have weathered a couple major surgeries and can only say be gentle with yourself. I would say mine were really just recovery time for first 6 months. But everyone is different.

I am not familiar with prostap but don't react well to many hormonal medicines. Is it an injection or something you can take as a pill and go off if it feels like things are getting worse with CFS? Good luck

mylady77 in reply to Hope264

It's just over 3 months since my surgery and I am perhaps panicking a bit as my current problems are affecting my ability to walk, drive and therefore work. I'm a single mam trying to keep up with mortgage repayments...

I've managed my ME/CFS so well over the years (first diagnosed at 11, 39 now) by being super careful about all aspects of life. I've avoided most medications, hormonal or otherwise, as my system is so easily upset.

This will be a course of three injections, one every 28 days. The BSGE surgeon said they have other patients on Prostap who have ME/CFS and cope well.

I think it's a gamble I may just have to take.

Thanks so much for your reply!

Best wishes x

Hope264 in reply to mylady77

Hello, how did you go with your injections? I hope your ability to walk & drive has improved. I can relate, it is a very scary prospect losing independance for daily living and at age it does not fit with people's expecttions of your abilities. Hope it went well for you & things are more manageable.

Hello there,

Unfortunately I developed other health issues (strange symptoms, latest theory is it could be Myasthenia Gravis...?) during the time I was trying to make the decision about the injections. My GP refused to administer them until we get to the bottom of what's going on with me.

Currently 'enjoying' a bout of shingles.

It's been one infection after another recently and the 'endo' pains, if that's what they are, are still causing me grief every month.

How about you? I hope things are going well...?

It's very kind of you to check in again - thank you!!!! Means a lot :)

You may also like...