Staying on Prostap?: My second round of... - Endometriosis UK

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Staying on Prostap?

Rae253 profile image
8 Replies

My second round of Prostap along with Tibolone has been for 9-10 months now. My first round was for 6 months then I had a year off in between. First time around I felt great. This time, not so great! The last 3 months at least I’ve been so down and ready to punch practically everyone for even breathing 🤦🏻‍♀️ And now I’m getting so achy, my hips have always been a problem. Now I am hurting on right shoulder, right arm, knees, back! I haven’t asked my consultant yet but I think I might just stop having the injections? But I’m doing that will it make the endo more likely time reappear? I already have a cyst that has grown (saw consultant Jan 2020). Next consultant appointment should be July 2020. Not sure what to do? Fed up feeling like this! I’m constantly taking cocodemol daily. Feel drained and feel like I am constantly moaning! X 💛

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Rae253
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8 Replies
Jasmin24 profile image
Jasmin24

Hi Rae253

I'm also currently on prostap. Only been on it 3 months, still got another 3 months to go!

I'm getting similar symptoms as you, I don't know whether to come off it. I'm not on tiolone.

I'm on antidepressants, has I'm really struggling with my emotions as well as the pain, that's feels like a flare up in my pelvis, all over achiness.

Would it be best to ring your consultant? To bring your appointment forward?

I'm sorry, I m not much help to you.

Rae253 profile image
Rae253 in reply toJasmin24

Hiya yes I’m thinking to try and get hold of consultant too, although they are hard to reach sometimes.

Can’t believe you’re not on HRT?! You must feel awful? Bless you x

Jasmin24 profile image
Jasmin24 in reply toRae253

I feel like, a piece of crap to be honest...I've got to laugh.

Currently of work, as I can not function around children, or function in general. I did a consultant in Feb, but she said the syptoms will ease after a few more injections.

If I be honest, I don't understand endometriosis, one consultant said I need to see a specialist, another said prostap will stop the endo.

Prostap was my choice, as I had it before 4 yrs ago after having an ablastion. I was ok then.

I don't want to go on the pill, been on it on and off for 20 odd years.

I feel the could will be too painful, especially with all tbe adhesions I have.

Would HRT work?

I don't get hot flushes, only every now and again. It's just the achiness and the stabbing pain, the emotions, forgetfulness. I can't think sometimes, or I can't get my words out.

I'm sorry I'm going off on a rant. I'm meant to be helping you with your question x

Rae253 profile image
Rae253 in reply toJasmin24

Haha don’t worry that’s fine, we all need help! I’ve tried without the HRT and I’m much better in it. I felt awful without it, hot flushes especially at night and mood swings were terrible. Saying that I think it’s been too long now and I’m starting to feel similar to how you have been feeling. My consultant first said to only have injection for 6 months and then I saw another one and he’s kept me on it for 10 months now. I’m just surprised they did not tell you to take HRT alongside the injection! It wasn’t a choice for me, my consultant said this is what you have to do, so I’m doing it!

I am always up and down with my moods and it is basically pissing me off now and probably my family/partner too! I hate work, I hate the thought of going out, I hate being around other people 🤦🏻‍♀️ It’s not right! A few people have said to go on anti depressants but my GP said no as they can be addictive. So not sure now?

Jasmin24 profile image
Jasmin24 in reply toRae253

Hahaha.... you do sound like me!

I'm just holding back, using polite words...I'm pissed with everything. I just don't understand any of it....I just want to scream at the top of my lungs!

I was hesitant about anti depressant, never liked the side effects of it, and yes being addicted to it. But I have got to say my emotions are a little in check, but I don't want to stay on it......arghhh why can't this thing be easy to deal with.

I know my GPs are pissed with me, but give me the care that I require

Apparently there is a q&a seminar in Birmingham, I might go to that, to see if I can get some answers

Rae253 profile image
Rae253 in reply toJasmin24

I’m with you with the screaming but! Haha!

I think I will go back to the GP then, maybe speak to another one. The thought of anti depressants scared me before but now I just want to feel “normal” again and not like a moaning, aching old lady!! I think the last GP thought I was just over reacting a bit!

I also look about 5-6 months pregnant at the mo too so that’s great! Ffs!

I live in Kent so a bit too far for me to go, but definitely go if you get the chance then.

I have joined a local endo group on Facebook and they arrange get togethers etc, so I will try and force myself to go I think as there’s others out there that understand what we all go through x

Jasmin24 profile image
Jasmin24 in reply toRae253

Very true...we will get through it!

The support groups help, I've joined one, but is a ball ache to drive there....yes still moaning, haha! 😂

No satisfying me lol

But to go to the doctors, it is there duty of care, to help patients! ....

Let me know how you go, if you do decide to go into antidepressants...I don't agree with it, but I'll do anything just to be a little normal

Take care Rae253 x

Shelly085 profile image
Shelly085

Hi I’m currently on Prostap but I’ve only had 1 month dose just to get my next but my g.p has told me to leave it an he is gonna try get me seen earlier. I aching all over an sometimes can barley move, I’m constantly tired just wanna sleep all day, the migraines an everything else that comes with it. Also I’ve had 3 periods in 5 weeks. I just don’t know what to do as I literally have tomorrow to make my mind up, I just know I can’t cope with my endo pain an this has made it better, but I also can’t cope with these side affects feel like a zombie 24/7

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