Prostap

Hi everyone, hope you are all ok :)

Sorry for the rant, I am just feeling so hopeless and don't know where to turn.

I had my 3rd Prostap injection on Friday and I keep hoping the side effects will get better. I have been pain free for the last couple of months which is amazing, but I'm so drained.

The hot flushes and night sweats are horrible and disturb my sleep and I constantly feel like I have no energy. I am beginning to feel like a broken record at work. I have booked a few days off here and there, had some working from home days and come in late when I struggle in the mornings but I feel like they must be getting sick of it. They have been so helpful and understanding so I am sure this isn't the case, but all I keep hearing is myself saying how tired I am, same excuse every time.

I have thought about trying HRT but I am worried the pain will start coming back if I do. I just feel so fed up. I am normally active and energetic but I just can't find it in me right now. It feels like I am letting everyone down.

Providing the Prostap injections continue to take the pain away, I am looking at another surgery toward the end of the year ( I had my first Oct 16). I am so sick of all of this, and you guys are the only ones who properly understand how I feel.

I would like children more than anything (I'm 30) but my long term boyfriend keeps telling me he is not ready to start trying yet. It has already been explained to me that I could struggle to conceive and get to full term, so I am trying to get through this as quickly as possible to see if my other half has a change of heart by the time I've had my next surgery (as time is of the essence), which is why I'm reluctant to try HRT - I don't want anything to delay their decision for a second lap.

Has anyone got any tips as to how I can perk myself back up while I'm on Prostap so I can stop making weak excuses and start trying to live my life again?

Sorry again for the rant, I just don't know where to turn :(

xxx

10 Replies

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  • Hi hun please stop the prostap injections the side effects just get worse. Put it this way I'm disabled now because of it and so are alot of other ladies. [edited to comply with our code of conduct] #lupronvictims take care hun πŸ’– xxx

  • Hi, thanks for your reply.

    I am not really in a position to stop the Prostap - I have heard plenty of success stories (and obviously plenty of horror stories!), but I am just happy that it has stopped the horrific pain I was in previously.

    I will definitely check out your Facebook group though, thanks for sharing :) xxx

  • Are you the lady that replied to a post of mine about being disabled from the injections. Can you tell me more as you didn't reply but let us know more detail of how you got disabled?

    I'm super curious as I've not heard anything like that and it got me really terrified so it would be helpful to all if you shared your experience of why it happened, and how it led up to you becoming disabled

  • I had 3 months of prostap earlier this year without HRT and it is tough. Could you try the HRT and see what happens? You can always stop taking it if it doesn't help. I had decapeptyl last year and did take tibolone with it and I didn't have the sweats/flushes so it can be really helpful.

  • Hi, thanks for your reply.

    I have toyed with the idea of HRT, but basically we are using Prostap as a test. I had surgery last year and my consultant said they had removed all visible endo, however, the pain is still very much present. He explained that it could go much deeper but he had no reason to look. If the Prostap stops the pain, he said he would go ahead with a second surgery.

    I am worried if I have HRT and the pain starts to come back, they will tell me it's something else and I'll be back to square one. I know there is something wrong, I have done for years, but no one has taken me seriously until now.

    I am so scared that I will end up not being able to have children that I don't want anything to get in the way of getting this sorted. Does that make sense?

    I think though that I may have to opt for HRT though, the tiredness and lack of energy is getting me down so much.

    Are decapeptyl and tibolone forms of HRT? How are your symptoms now?

  • Decapeptyl is another drug similar to prostap, and tibolone is a synthetic form of HRT which is sometimes used with it. Is your consulant basically saying that if prostap stops the pain, it's definitely endo?

    I had 5 months of decapeptyl and 3 months of prostap, and I had pain with both drugs, both with and without the HRT. There was never any suggestion that because I still had pain while I was on them that I didn't have endo. You really need to know exactly where he looked and exactly what he found and what he did - if the endometriosis was ablated (lasered) or excised (cut out). Simply telling you he might have missed some but he didn't look everywhere is pretty rubbish. Did he give you any idea of staging - how severe your disease is?

    This gives you some information about the NHS approach to severe disease:

    england.nhs.uk/commissionin...

    This is a list of specialist endo centres in the UK, most of which are NHS

    bsge.org.uk/centre/

    Although the centres mainly treat women with severe disease, you can also be referred to one if other treatments have failed.

    Taking the HRT is important as it helps to slow down bone thinning which is a side effect of prostap, so its for more than just the sweats, and I personally would take it unless given a very specific reason not to.

    I had a hysterectomy with removal of tubes and ovaries and excision of all my endometriosis 3 months ago and so far this seems to be working for me but obviously this wouldn't be appropriate for you right now. I had had other surgeries and numerous drug treatments before that.

    Hope this helps. x.

  • Thank you so much for this.

    He said he found endo on both ovaries but didnt suggest a stage. He said he had removed all he could see. At my follow up when I told him the pain was still very much there, he explained that in order to see if the endo goes deeper, he would have to cut away healthy tissue which can cause more harm than good if they are not certain, which is why he is trying me on Prostap.

    I just feel completely lost. I was so full of hope when I woke up from my op and he said it all went well and I shouldn't experience further problems.

    I have asked multiple times for my surgery notes as I believe it could be on my bowel too but the keep sending me my follow up appointment letter regarding the prostap. I don't know how the endo was removed, but they removed an 8cm cyst at the same time.

    I am being treated by reproductive medicine by an infertility specialist. Although I am frustrated, it is much better than when I was under general gynae. I have scoured the internet trying to work it all out but my next consult isn't until Sept and I don't know where to turn.

    Like I said, I am so worried about my potential to have children. I have tried in the past with a previous partner when I was younger but in the 18 months we were trying, nothing happened. My current boyfriend reluctance to try is a worry which is why I want answers sooner rather than later so he can try to understand the position we are in. He has been very much 'head in the sand' over it all.

    I wish people understood what we have to go through, mentally and physically :(

    Thank you so much for your advice though, and I am glad you are starting to feel better after years of surgeries etc x

  • If you think you may have bowel endo then you definitely need to be referred to a specialist centre. Do you have bowel symptoms? Other symptoms like deep pain during sex can indicate rectovaginal/bowel endo. I'm not quite sure what your specialist meant when he said he'd need to cut away healthy tissue to see if there was endo underneath, it would be interesting to know exactly where he was planning to cut! Can you see your GP to see if they have more detailed notes about what was done? Your GP can also refer you on to a specialist centre.

  • I am on month free too. My dr gave me livel from the start and I've have no side effects. I was worried about the pain too but the hrt is such a small amount of hormones that it hasn't made pain any worse at all. It's amazing

    So glad you are pain free and hopefully if you try hrt it helps. You could always try and then stop taking the hrt if it doesn't changev

  • Hello, really sorry to hear that you are having such a tough time at the moment. I'm sorry that this might be a bit of a long reply, but I hope it is helpful.

    When surgeons operate to remove endometriosis they are operating by eye and, although they do use magnification lenses to help them carry out laparoscopic surgery, they are often unable to remove tiny microscopic deposits or deep endometriosis that has permeated a patient's abdominal organs and GnRH Analogues/Agonists (like Prostap) are often prescribed to chemically shrink back any endometriosis left behind. 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 growth of endometriosis. I've always thought about it a bit like tackling a garden overgrown with brambles - first you go in and cut everything you can see back with a hedge trimmer, then you apply weedkiller to the roots...

    However, oestrogen does not just feed endometriosis, it is also plays an integral and invaluable role in many other of the body's processes. Consequently many of the side effects associated with Prostap / "GnRH Analogue/Agonist" treatment are associated with the hypoestrogenic (oestrogen-deficient) state "GnRH Analogues/Agonists" induce; including hot flushes, sleep disturbances, fatigue, potential loss of bone density, brain fog (memory problems/poor concentration), and significant mood changes (including depression and anxiety).

    This is why many specialists prescribe Prostap along with a complementary dose of "add-back" HRT - the idea being to "add-back" just enough oestrogen to ease some of Prostap's more unpleasant side effects without reactivating the growth of Endometriosis. But as every women's body is unique and it can take a bit of experimentation to find the right "add-back" HRT dose - some women need just a low dose of HRT, while others find that their body requires a much higher dose of HRT "add-back". Similarly, some women find different brands and recipes of HRT suit them better than other - it is all sadly again just a case of trial and error until you find what works best for you.

    Have you spoke to anyone about how you are feeling? GnRH Analogue/Agonist (Prostap) treatment is known to impact upon mood and it is important that you keep your specialist and also your GP informed about how you are feeling. Both should be able to offer you some emotional support to help you cope with the side effects of Prostap treatment, but if you feel that they are not up to speed with the neurological and physiological side effects that Prostap can induce then you need to refer them to the "Summary of Product Characteristics" published by the drug's manufacturer.

    Prostap is manufactured by a company by Takeda Pharmaceuticals UK. You can download their published guidance regarding Protap's actions and side effects here:

    medicines.org.uk/emc/medici...

    Also, although they do not provide direct advice to patients, all of the big drug companies employ pharmacologists whose job it is to advise Specialists, GPs and other medical professionals about their products, the potential side effects of those products and how they can best help their patients in managing any side effects. Takeda Pharmaceuticals UK contact details can be found here:

    takeda.co.uk/contact/

    Being prescribed a treatment to manage a condition is not the same as being prescribed a cure and it can be very difficult for the people around you - be they employers, friends, or loved ones - to keep that in mind. Every treatment, even the successful ones, can still have side effects that you may have to learn to accept and live with. It does sound as though you have a very supportive network of people around you, but if you are tired of struggling to find your own words to describe the impact Prostap is having upon your quality of sleep, and energy levels etc... then you could just print off the "Summary of Product Characteristics" and ask your employers, partner, family, and friends to read that too. Then maybe you won't feel that you need to make excuses about how you are feeling because you will know that they have concrete evidence from the manufacturer that what you are experiencing is not unusual?

    Finally, have you ever been offered an Pelvic MRI? Like everything they have their strengths and weaknesses, but they can provide a very good picture of any deep infiltrating endometriosis that your specialist was not able to see / remove during your laparoscopy. It might be something to ask for? An MRI mapping any residual endometriosis and deep deposits should help your specialist assess any potential impact that might have upon your fertility and also serve as an invaluable resource for any future surgery.

    Sorry that was such a very very long reply, but I hope it's a helpful one.

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