Prostap side affects : Hi Everyone Hope... - Endometriosis UK

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Prostap side affects

Skyhigh20 profile image
6 Replies

Hi Everyone

Hope you are all keeping well. I really need some advice. I’ve been on Prostap for 8 months now as I’m waiting for surgery. I’ve been feeling fatigued and also have been getting headaches and can feel feel this pressure in the back of my eyes and my vision is sometimes blurry I know these are all side affects. I feel I can’t carry on with the treatment anymore.

Has anyone else had this experience and have you got any advice as I’m so tired and don’t know what to do. I’ll be calling the GP i the morning to discuss but at the same time know that there is no alternative at the moment and I don’t know how long I’ll be waiting for surgery.

Thanks

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Skyhigh20
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6 Replies
Lindle profile image
Lindle

Prostap is only licensed for 6 months' use as the long term side effects are unknown. If taking it for longer off license the consultant who prescribed it must go through all the unknown risks and get written consent from you to agree to take it longer. It can be hard if this relieves pain and there is a long wait for surgery, especially now with Covid, but I would be vert wary of taking it any longer with neurological symptoms.

Skyhigh20 profile image
Skyhigh20 in reply toLindle

Thank you for replying I really appreciate your response . I had no idea about the consent form and the long term affects were not discussed with me only the hot flushes etc. At the time I felt as though I no other choice but to take the treatment due to surgery but I know this will take longer now.

wanwood profile image
wanwood

So sorry to hear this and that your surgery has been delayed.

I was on Prostap with HRT for 9 months between surgeries and had a good experience on it in terms of my endo, but I didn’t develop any side effects that were as concerning as yours.

You are right to contact the GP but I think you should also contact your consultant (perhaps ask for a phone call?). They should have explained the potential risks of Prostap to you better.

It’s possible that your ovaries are suppressed enough that you won’t start your periods again for several months anyway if you stop Prostap now. You may have had enough benefit from it already to make the next operation easier.

Lofty1589 profile image
Lofty1589

I’m currently on Prostap and have been for 4 months now. I get severe migraines pretty much every few days and it’s hell on earth 😅 Since I used to get them very rarely before, I can only assume it’s because of the Prostap

Tanaka2001 profile image
Tanaka2001

Oh ii feel you, i was due my 7th prostap injection today due to waiting for a date for surgery hysterectomy for fibroids. During my 6th injection I have fallen into a deep depression, never had before. I have just told my consultant I did not want another injection especially when there is no date for surgery due to covid, i could not believe it when she said “oh yes that is one of the side effects “ she had not told me this before. So I asked if this will affect my surgery wish she just informed me there are dates in January, and she said no it will not , fibroids would have shrunk by now, but do get back to us if you experience heavy bleeding and because prostap is a slow release injection you might not have a period until January “.

What i learnt today was do not always accept what treatment on offer. A support worker came with the injection at the reception to tell me I should have it and yet the appointment was to have a consultation with the Consultant i declined and demanded to see the consultant

Skyhigh20 profile image
Skyhigh20

Thank you all for your replies. I feel some relief now I thought I was losing my mind. I don’t feel myself the hormone treatment has completely wrecked me. I was due my Prostap injection this morning but refused due to my symptoms and have asked this to be investigated. I also asked the nurse if I should be monitored and how often this is required and if we need to have blood tests. ? She said she has no idea only that she can administer the depo but understood my concerns and will be speaking to docs this afternoon and I’ve left a message at the gynaecologist clinic to call me back as it’s only answerphone due to COVID.

If anyone else is on this treatment please check online for side affects it’s not always provided at appointments. I’ve attached the link below (in particular check the other side affects section) the nurse I spoke to this morning did not know about these side affects she had to look through the leaflet!

cancerresearchuk.org/about-...

Hope everyone is keeping well x

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