prostap

[Lothead01]

hi

I’ve had 1 shot of Prostap for an operation. My anxiety is through the roof. I have had terrible brain fog to the point I didn’t feel like myself and couldn’t even think properly. I’m now on week 3 since the injection and for a couple of hours I will feel like myself then I get overwhelming anxiety that lasts for ages..

has anyone else experienced this and how long does it take the side effects to subside…

I was told it stops working at 4 weeks and will then just come out of my system but I’m struggling to convince myself I will get back to my usual self.

Thanks

[Mindfullness4791]

You poor thing. The problem is that it switches your ovaries off and puts you into a chemical menopause abruptly. A lot of people benefit from add-back hrt. Have you contacted your consultant? X

[Lothead01 in reply to Mindfullness4791]

Hi, thanks for responding. Yeah I did but they have said as it’s just one injection to wait it out as adding hrt or an antidepressant could disrupt things more.

My dr said most people only get mild symptoms. This is definitely not mild

I wasn’t even told this is what the injection does :-s I was told it softens things up that’s it. I wasn’t expecting to feel like this at all.

[Sez73]

I feel for you terribly. I absolutely hated these injections. Doctors never tell you the whole story & continually play down what can be horrific side effects (there’s a surprise). They also seem to convince themselves that because it’s a monthly injection, it’ll ‘wear off’ after 4 weeks if you stop after a month, all will go out your system. I asked my consultant when my periods would restart after stopping injections after the third one, he said periods would usually return in a month or so as essentially they’re monthly injections so wear off. For info, it took 7 months for my period to come.

My consultant advised add back hrt - I tried to ride it out without it but symptoms were horrific. I could barely move, whole body severely ached, couldn’t even pick up a kettle tendonitis in elbows/Achilles so bad, joints sore, brain fog, horrific anxiety, you name it. I thoroughly researched so many peoples feedback on these injections and deep down knew it probably wasn’t right but I had tried everything else and I think sometimes if you’re seen to be refusing treatment options, it can give the sense ‘we’ll you can’t be feeling that bad’ so I reluctantly tried them. Only slight upside endo and adenomyosis pain lessened slightly but the raft of extra side effects made me feel even worse than before so, as I anticipated, they were not worth it.

Don’t worry, you will get back to your old self, it just may take a little longer than a helpful doctor tells you. Once I stopped the injections after a few weeks the horrific anxiety did subside and I had 6 months of a generally feeling in limbo land, had hot flushes, less endo pain and everything felt a bit dream like then I physically started noticing when ovaries were starting to kick back into action , ie rising oestrogen making me mentally feel stronger & anxiety lessened, aches, joint pains & brain fog lessened but with that came the endo pain, fatigue and general feeling of fighting illness and feeling unwell. Like I said, you get rid of one thing and another replaces it and I just don’t know what the answer is. Hormonal treatments aren’t the answer for a lot of women.

As with all treatments, they take things away but give you something in return and it’s a matter of trying to find something which suits. Sadly I’m not a good advocate as I’ve tried everything as well as extreme 9hr surgery yet nothing has got rid of this horrible disease.

I wish you the very best of luck, I can sympathise and empathise with your situation having been through it. I tried add back HRT and it didn’t help, maybe lessened the hot flushes but, again, brought a raft of other unwanted symptoms. Everyone is different, no treatment fits all and the medical professional need to start realising that.

All the very best and I hope you get over things and feel your more normal self very soon. X

[Lothead01 in reply to Sez73]

Thankyou for your reply… can I ask how old you were when you had the injections? I’m 41 and worried to death now that my cycle wont come back… I wasn’t told about any of these side effects I wasn’t even told that it stops the hormone. I was just told it was to soften things up for an ablation which I’m not having now because I have lost all trust and it was only a precaution because they happened to find adenomyosis when looking for a cyst. I’m so cross at myself for being talked into this.

I only have to have the one injection and next Wednesday will be my 4 week mark which I am told it stops working then and things should start to rise back up but there is always that niggling doubt (anxiety talking)

I was going to insist on trying a replacement hrt just so I can function again but then it puts me off with side effects.

The anxiety just consumes you and you can’t do anything about it that’s the bit I think people are struggling to understand. I can get anxiety but I am normally good at exercising and breathing etc but like you said the fog in your head is horrible.

I have lost all my emotions and my appetite completely. I have lost almost a stone because I just have no desire to eat which is not like me… Within 4/5 days of the injections I had prickling and pain in my hands and feet then the anxiety came out of nowhere. The prickling and pain are a lot better now which is something.

I’m so pleased to hear you are back to yourself though and you are completely right the drs do not give you a full picture (mine gave me no picture) a friend is very interested in hormone health and conditions and she said about seeing a private hormone specialist so that might be the next route once I feel back to myself x

[Sez73 in reply to Lothead01]

There is no one size fits all with these conditions sadly. Like EvilEdna, I have stage IV endo, bowel stuck to uterus and ovaries, and ovarian cysts alongside ureter involvement. Treatment such as Prostap seems to have worked for one person and not the other yet with similar sounding issues. I think the main thing which concerns me across the board is the attitude of doctors. I’ve been through the NHS system and paid extortionate costs privately and there are always similar issues. Male consultants often underplaying the severity. All I want is full transparency and I believe as patients we deserve to be told the full picture. Whether treatment is successful for one person and not the other can be terribly frustrating, but not getting full and proper information from so called experts can also be demoralising. Our bodies, we deserve to know exactly what treatment does what and full explanations of side effects, from my experience there is a real lack of communication which often breeds more worry and mistrust. All the very best to you x

[EvilEdna77]

Everyone is different and our bodies can have massively different reactions to medications. I have had a very different and positive reaction to prostap. I am 46 and have been on monthly injections since June following a stage 4 endo diagnosis with large ovarian cysts and fused bowel, I'm on the list for a full hysterectomy. It has stopped my continuous bleeding, not a drop after the first week and no more agonising pain now only take a couple of painkillers a week, rather than continuosly maxing out dosages. I haven't felt this good in years. I have started on hrt patches as I was getting hot flushes and some insomnia but again these have helped reduce the severity of them. Trust your gut, speak to your doctor, and experiment on different options until you find which works for you. I had an ablation 4 years ago and wasn't given any drugs before or after. The ablation did help reduce bleeding and pain for about a year before it gradually returned. Good luck to you and hopefully you can find an option that works for you soon.

[Sez73]

I had just turned 49. Like you, I was worried at my age that the injections would just plunge me into menopause and keep me there. They were such a shock to the system, my last injection was start of March and I had my first period early Oct, however a month prior to that I just knew in myself things were returning to ‘normal’. Funnily enough the horrid anxiety lessened a lot quite quickly after stopping the injections, but other side effects took longer to go.

Please don’t beat yourself up about being talked into anything. You make decisions like this purely on the basis of the desire to get well and lead a normal life. The fact that doctors don’t give correct info or full info is unfortunately one thing we can’t control. Like me, you were probably thinking ‘I’ll try anything to help’ and you feel you need to me seen to helping yourself. Doctors give limited information, I’ve done 9 rounds of IVF and had countless surgeries and never once have I felt fully informed. It has been an eternal battle over 20 years and I don’t ever see it changing for women which is very sad. We deserve so much more.

Funnily enough one doctor actually suggested giving limited knowledge as the less we know the less we worry. It’s quite frankly laughable.

For you not to be told properly that key hormones were effectively being switched off is disgraceful. It’s your body yet for some reason that doesn’t seem to matter much to the medical professional. I believe there is still an underlying patronising tone in what they tell you. Just be a good girl and take the medecine and listen to what the clever doctor tells you, no need to ask any intelligent questions. That’s what it feels like to me.

Everytime I show knowledge or ask in depth questions I get the eye roll, it is beyond patronising and thoroughly degrading. They have no idea what additional damage it does to your mental health when we’re already stretched to the limits on a daily basis.

I was led to believe HRT was the wonder solution which would take all the nasty side effects of the injections away. It doesn’t. I tried to go cold turkey initially to see if u could manage without as I wanted to test what treatment was giving me what symptom, the consultant was cross with me saying no wonder I was feeling awful being plunged very fast into menopause, I questioned him how was I supposed to tell which treatment gave me which side effect if I took everything together. He didn’t answer that.

I totally understand what you are getting it re the anxiety. It was off the scale. Hormonal imbalances can cause horrific anxiety and this is not just ‘butterflies in your tummy’ anxiety, this is not being able to move anxiety, it paralyses you and it is so poorly misunderstood.

Like you, I lost all emotion, felt totally flat and had neurological symptoms in prickling/nerve pain in hands/feet. I believe it all part and parcel of those awful injections as that has tended to settle now. I really do think it will hopefully be the same for you once youve had sufficient time for the drugs to work out your system.

I am funnily at the stage you’re probably getting to of looking into hormone health specialists as I believe they may have some more understanding of the impact of these imbalances. Having adenomyosis and endo, like yourself, causes so many extra things kicking off in your body both mentally and physically as it’s such a multi faceted, horrifically misunderstood illness. I cannot believe the medical professional show no true dedication into researching more and governments addressing the extent of the issue, everyone seems happy to continue doling out the same hormonal based medications and simply pushing all the horrendous side effects (which often give worse issues than the conditions they’re treating) under the carpet. So much has to change and it gets beyond demoralising thinking about it. We are failed, simple as that. You’ll laugh, but I regularly do the Euromillions in the hope I will win, not be buy a nice house/clothes or whatever, but to set up a foundation for endometriosis and adenomyosis sufferers to offer all the support and access to help as possible. I dream of making that happen.

All the very best, fire away with any questions whenever you need to and I really hope you feel a bit brighter soon x