PROSTAP Information needed PLEASE - Endometriosis UK

Endometriosis UK

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PROSTAP Information needed PLEASE

staceyannkelley profile image
5 Replies

I am looking into PROSTAP injections but have read all sorts.

Initially for 6 months but possible talk of 3 years (but I am sure I have read that you can only have it for 6 months max) ????. I have Stage 4 Endo and have had Abdominal Hysterectomy but still have 1 Ovary left no tubes. Please could anyone help with their experiences of PROSTAP. Thankyou xx

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staceyannkelley profile image
staceyannkelley
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5 Replies
clairemck profile image
clairemck

Hi Hun,

Sorry to hear about your Endo. I was on Prostap Injections for 6 months, (they only give you them for a period of 6 mths max).....for me personally it was a nightmare, put me into the medically induced menopause which was hell, I piled on lots of weight, hot flushes, night sweats, mood swings galore, it was hell, I ended up taking HRT along with the Prostap. On a positive note the Prostap did take the Endo pains away but I personally could not cope with the side effects of Prostap, so I only took the injections for around 4 months then came off them, but each and everyone of us is different, what works for one may not work for another and vice versa. I really hope that you find something that works for you as Endo is a living nightmare, and not many people really understand the severity of the pain. I have recently had my second child he is three months old and already my Endo is back again :-(, so back down that road of having tests, painkillers you name it.

Let me know how you get on, hope all goes well for you.

With love

Claire xxx

Fletch profile image
Fletch

Prostap has given me a little bit of my life back, so I am very much pro it. But, as the above statement shows; it works differently for different people. It's one of those things that you need to just try to see how you get on with it.

Personally though, I was pretty much bed ridden 4 days out of 7 last year. My pain was horrific. But having Prostap helped me get out the house again. It helped me live again.

Plus, the 6 month thing isnt a max at all. If it really works for you, you'll be able to have them for longer. I've just had my last one, and my consultant has said if I want to continue I can, but I have said no. I want to see how I am without them.

If you do decide to have it it, I would 100% recommend you to have an add back of HRT such as Livial. The side effects of it are quite bad without.

Hope this helps

Katt profile image
Katt

Hi

I have just come off of prostap after 3 injections out of 6 as I was having very similar side effects to Claire. The worst for me was really bad headaches. I was put on hrt but it didn't seem to help much. I would have stuck with it had my endo pains gone but I was still suffering so decided the payback wasn't good enough. However I gave it a go because I have heard really good things about it. My philosophy is give everything a go as it might just work. Good luck x

Kb3rry profile image
Kb3rry

Hi,

I have a similar experience to Fletch. I had the injections for six months and other than feeling a bit nauseous for half an hour or so after getting the injection it was good for me. I too got a taste of life again and was able to go away on holiday without having to worry about pain.

The endo pain is back now with a vengeance but I am hopefully going to start my next course of injections later this month after seeing my consultant, for me anything is better than this pain.

Good luck with whatever you decide.

maryb123 profile image
maryb123

Hello,

I was on Prostap without HRT for 6 months last year, and for 6 months this year I've had Livial as addback therapy along with the Prostap (IVF in between).

Although the side effects without HRT are difficult, for me it was a massive massive improvement on living in agony. I could work again, be out, commit to meeting up with friends etc and not have to cancel because I was at home unable to do anything but pain killers. I was having a lot of pain relief - strong anti-inflammatories, paracetamol and codeine and the pain still cut through (surgery to remove a 10cm endometrioma last year). So I had side affects from pain killers - really bad headaches from codeine, and physical signs of addiction. I was pretty desperate with the pain, even suicidal at times despite having a really great life, lovely husband etc. - it was just too much to bear.

I was scared going onto Prostap but being forced to (because of the endometrioma) was a good thing for me. It took away the decision and I'm so glad I've had the opportunity to try the treatment. Livial really helps the bad side affects and if the consultant will let me my long term plan is to stay on Prostap & Livial. It's a big decision with the side effects etc., but preferable to more surgery or pain. I can't even remember when I had a pain killer! I think I had one ibuprofen about 3 weeks ago, so it's wonderful to leave all of those drugs behind.

I'm really pleased that there is a treatment that seems to stop the aggressive growth of my endometriosis. One thing that's worth knowing is that the way it works is to get worse before it gets better - your body produces more of the hormone at first before it shuts down, so I'm afraid the first 3 - 4 weeks on Prostap might feel worse than before it. I was no different but did lots of reading before hand so knew what to expect. For me the main benefits came with prolonged use.

Good luck with it

Mary

x

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