Prostap side effects??: Hey guys, been on... - Endometriosis UK

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Prostap side effects??

lisaevans2912 profile image
7 Replies

Hey guys, been on prostap for 6months now, started hrt livial in December. Hysterectomy due in March. up until now, i think iv done ok but the past 2-3 weeks i have no idea i feel like i am loosing my mind!!

I can hardly sleep for more than 2 hours a time without waking up sweating, my anxiety is thro the flipping roof and the pain im feeling in my lower back is beyond anything iv ever dealt with. Stomach bloating daily, i look pregnant half the time and the pressure between my legs makes it uncomfortable to walk. Don't even get me started on the moods, i went from fine to literally sobbing thinking i needed to ring the crisis team and i had no idea why!! Someone please tell me this isn't me loosing my mind.

Just feeling completely lost, lonely and a little scared

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Jd27 profile image
Jd27

Iv been on them for 4 years ☹️

It not in your head

All of what you have said is me from day one

I’m coming off them now my god it’s been a living hell

Mood swings

Being sick

Pain all over

Headache

Living on the loo

Can’t sleep

Can’t eat

I hope you find peace xxx

ccsmith profile image
ccsmith

Yes sorry. I think you may be like me where the drug is wearing off so your having surges of your ovaries starting to wake and then the medication! I’m on Livial as well but night sweats recently have not been fun (I’ve been on it about a year now). This weekend my mood/anxiety and a bit of paranoia was horrendous! I’ve been waiting for hysterectomy too and they’ve told me April 🤞🏻🤞🏻🤞🏻🤞🏻 it was meant to be December !

Not long now - have you got a date?

mrsmcbain profile image
mrsmcbain

You are not loosing your mind! I had my hysterectomy four years ago & was on Prostrap for six months prior to my op. In my opinion it is a dangerous drug and people need to be more informed before taking it. I had all the symptoms you list and all whole heap more but the worst being I actually became suicidal. Sobbing for hours on end with no idea why, but feeling that my life was not worth living.

I would warn anyone contemplating taking Prostap to do their homework first & if possible avoid at all costs. The ironic thing was it didn’t really help with gynae symptoms at all.

If you ever feel alone & scared please reach out. This is only a temporary crappy phase in your life, things will get better

Take care xx

NoEndoInSight profile image
NoEndoInSight

Hello, so sorry to hear you are having such a tough time at the moment, but please rest assured that you are definitely not loosing your mind. This is going to be a bit of a long reply, but I really hope it helps and reassures you.

The symptoms you describe are all well established side effects of Prostap treatment - many woman taking this drug experience exactly the same type of side effects (myself included). Sadly hormone treatments like Prostap can be a bit of a gamble side effects-wise: I've had two courses of Prostap - the first worked fine and suppressed my Endo symptoms without any severe side effects, the second course was sadly a completely different experience and I experienced lots of severe and debilitating side effects.

Prostap is a GnRH Analogue/Agonist. This class of drugs suppress your body's production of oestrogen / progesterone and thereby your monthly cycle. This can bring relief from cyclic endometriosis symptoms because oestrogen feeds the progression of endometriosis. However, oestrogen does not just feed endometriosis, it is also plays an integral and invaluable role in many other of the body's processes - like your body's metabolism of serotonin and dopamine (the "happy hormones") and melatonin (the "sleep" hormone).

Are you being prescribed “add-back” HRT alongside Prostap? If not then it might be worth asking your specialist to prescribe some to help lessen the severity of the side effects you are suffering from? Many of the side effects associated with Prostap / "GnRH Analogue/Agonist" treatment are associated with this hypoestrogenic (oestrogen-deficient) state the drug induces - a low maintenance dose of "add-back" HRT could help alleviate your side effects. However, sadly it may be that "add-back" HRT is not suitable for you due to your upcoming operation, in which case you need to speak to your GP and your prescribing Endometriosis Specialist about how else they can support you in dealing with these Prostap side effects up until your operation. As I said above, all of the new symptoms you describe are well established side effects of this type of hormone treatment and it is your GP and your prescribing Specialist's job to help support you in managing/treating them. So please do get in touch with your GP and Specialist asap and let them know how you are feeling.

Have you read the Prostap manufacturer's (Takeda UK's) Summary of Product Characteristics (which is basically their detailed drug and side effect leaflet for patients and for medical professionals)? It lists all of Prostap's established side effects and you can find it online here on the UK's official drug information database Medicines.org.uk:

medicines.org.uk/emc/produc...

If you have a look at section 4.4 of Prostap's Summary of Product Characteristics you will see that significant mood changes (including depression and anxiety) are listed as "common" side effects and given particular attention under the “Special warnings and precautions for use”, so it really is very important that you make sure you advise your GP and prescribing Specialist that you are suffering from mood changes asap. If you look at the general side effects table for female patients further down the page then you will also see that insomnia is listed as a "very common" side effect.

I have found it useful to print a copy of Prostap's Summary of Product Characteristics and have it with me when I attended appointments or telephoned/emailed my GP or Specialist. It allows you to refer to the key sections of the drug manufacturer's advice and keep the conversation focused. So instead of saying "I'm feeling a bit off" you can say "I'm suffering from these new symptoms - they are listed as side effects on the Prostap Summary of Product Characteristics leaflet so how can these side effects be treated/managed?" There are lots of ways and means by which your side effects can be alleviated.

But ultimately do please remember it is the drug making you feel the way you currently feel, you are not loosing your mind. Believe me I really do know how scary such side effects can be - I'd also recommend getting your family and friends to read a copy of the Prostap Summary of Product Characteristics so they too understand what you are dealing with and can help support you better. It can also be reassuring for them to know that it is the drug and not any aspect of your personal relationship with them that is causing you to feel a bit out of sorts while you are undergoing this type of treatment.

I really hope you feel better soon, x X x

BBBOA profile image
BBBOA

When I had to do take similar I felt completely insane! Totally paranoid and all over the place. Felt really ill the whole time. So definitely not in your head!

Good luck with your hysterectomy.

Mazg49 profile image
Mazg49

Been on it 3 months hyrzrectomy March nothing but balance issues Wierd head migraines don't no how u coped 6 months I'm not on HRT till after op

lisaevans2912 profile image
lisaevans2912

Hey guys,

thanks for the replys!! sorry for the lateness of this iv had a week from hell,

yes i have a date 28th march. It cant come soon enough!! I managed to speak to the endo specialist nurse yesterday who said that im prob suffering from ibs as this comes part and package with the rest.....just another to add to the list i guess!!! I did however buy a tens machine and im not sure if my minds just putting me into a false sense of security but....i seem to be able to do things a little better!! AT FUCKING LAST!!!

Lisa xxx

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