I’m 38 with stage 3/4 endo with cysts and fibroids- had laparaoscopy and hysteroscopy on Jan 31st and consultant says everything was successfully removed. However... the pain didn’t improve after my op so after 5 months on cerazette the consultant prescribed 4 months of Prostap monthly injections.
I am just about to have injection no 4 on Friday but went back to see the consultant today as over the past week I’ve felt progressively worse- severe migraines that make me vomit multiple times, increasingly worsening insomnia and hot flushes at night.
Not sure what I was expecting him to say but he said I’m too young for a hysterectomy so wants me to do an additional 3 months of injections with the addition of HRT...
He has put me on Ellesse Solo 1mg a day and I was wondering if anyone had had any experiences of HRT with Prostap- how long did it take to work, did it get rid of/improve your side effects/menopause symptoms.....
and what steps did you take after the course of injections?
Any advice would be greatly appreciated- feeling a bit lost and overwhelmed right now... want we want more than anything is a baby but we seem to be moving further and further away from that goal!
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LadyB1984
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I’m 41 and have been on zoladex 10 months now. When I first started it I felt really unwell (similar symptoms to you) and stopped it after 2nd injection. I had a month off & then Consultant encouraged me to try again with HRT and majority of my symptoms eased significantly. I still get hot flashes, memory loss and hormonal surges. I’m now awaiting a hysterectomy as my endo has eased significantly and i do not want to stay on Zoladex forever. I’m not cured but I can cope better day to day and pray hysterectomy will put me in a similar state.
Sorry just saw the end of your message. A lot of people take this treatment to shut everything down and then when they stop they get pregnant. I’m so sorry how your feeling as I was there 9 years ago. I’m very lucky and fell pregnant with my daughter after 6 years of trying and about to start IVF. My friend had zoladex after egg collection with her IVF and then fell pregnant when it was stopped.
Thank you for your message, and your encouraging words. Nice to hear that there might be some light at the end of the tunnel. I just want to feel well again, but a baby would really be the cherry on the cake! If you don’t mind me asking why have you waited for the endo to ease before having a hysterectomy? Xx
The consultant said if being in medical menopause helps then a hysterectomy may help. If I still have pain in menopause then I may need a different type of surgery! I must admit I have been trying to avoid big surgery up until now but I have got to the point that I don’t care any more. My endo is all over with loads on my bowel, I’ve also got fibroids and frozen pelvis. He initially said I was too young for a hysterectomy even though I’m not too young for a medicine induced menopause!!! I’ve just had an MRI so I’m hoping it can all be removed & bowel sorted.
It’s never easy to know what is right to do and it’s especially hard when you are craving a child.
That makes sense, and I really hope it works for you. It is so difficult isn’t it- so much risk associated with each decision you make and so many unknowns. I wish you all the best x
After doing much research on prostrap as I was given this too, I found out that 1. They give this injection to men with prostate cancer. 2. The injection shuts off your ovaries, sending you into early menopause. 3. The biggest and worrying one for me at 29 is, when having this injection there's a high possibility that it can make you infertile once stopping the injection. So not sure why they have said your too young for a hysterectomy but here we'll give you this injection that sends you into early menopause anyway. Also the injection last for 3 months, how come they have advised to have it every month?
For some reason I was never given the HRT and found it horrendous, the pain is still just as bad, at least when I was on microgynon I kinda knew when the pain was coming and could prepare myself. Safe to say I defo won't be having any more injections of prostrap! Xx
There are 2 types of Prostap injection- one lasts 3 months and the other is given every 28 days- the consultant thought the monthly injection would be best for me as not such a heavy initial dose and flare up. Also meant if I didn’t get on with it I only had to suffer for 28 days rather than 3 months.
I must say we asked exactly the same question- how can it be ok for me to be in medical menopause but not actual menopause at this age- his response was vague to say the least!
The injections have definitely helped with the pain and have given me some quality of life back- just hoping the HRT will balance out the side effects for me.
Best of luck with your journey and sorry Prostap didn’t work for you x
What is HRT? My dr wants me to try lupron which sounds the same as Prostat...anyone know which is better or they both horrible cancer drugs. This all stinks...
All of the symptoms you mention - the migraines, hot flushes, and the insomnia - are all known side effects of Prostap treatment (as you can see in the manufacturer’s published Summary of Product Characteristics):
Prostap supresses Endometriosis by completely suppressing your body’s production of oestrogen (and progesterone incidentally along with with), but you need these hormones for many vital bodily functions - particularly oestrogen. So the longer you are prescribed Prostap the greater a severity and variety of side effects you may potentially suffer, which is why most consultants prescribe it alongside a dose of “add-back” HRT (adding back some vital oestrogen and progesterone).
It is worth bearing in mind that there are various different types of HRT - different brands and formulations of hormones - and obviously different doses. And there is no “one size fits all” as every woman is different - some women find they need just a low dose of HRT and some need a lot more.
I tried three different types of “add-back” HRT and ended up requiring almost four times the originally prescribed HRT dose to suppress my Prostap side effects. There is a lot of trial and error, and even then there may come a point where you decide that (with or without HRT) Prostap’s side effects outweigh its benefits.
You mention in your post that you tried 3 types of HRT. Can u ask which ones you tried? What side effects did you experience?
I tried Femoston Conti 1/5 but felt awful, and my consultant told me to go with the lower dose of 0.25/2.5. I'm afraid of making things worse. Just had my 3rd decapeptyl injection, and the headaches and hot flushes are unbearable at this stage.
Kliovance and Indivina to start with - both not great. I ended up on bio-identical estradiol gel HRT daily with a monthly course of utrogestin (progesterone). It took quite a bit of experimenting to find a dose that worked functionally well.
Still hunting for something that works right for me, but ever hopeful. And remember - every single person is different so what doesn’t work for one might be just what another needs. Best of luck, x ❤️ x
Hi there, I’m taking my first 6 month course of zoladex which is said to be the equivalent of prostrap. I too have found the pain has t subsided but recently had a scan which showed no regrowth of endo after excision but now I have fibroids.
I suffer from a lot of lower back pain and pressure and sharp stabbing pains in my lower abdomen. I also bleed ridiculously heavily and for a long time.
With the zoladex I am taking hrt from the start of the injections - tibalone. I have had a few migraines, no significant hot flushes and a little bit of sleep disturbance. My main complaints have been terrible aches and swelling particularly of the hands and feet, terrible fatigue, empty headed ness, weakness and the worst part has been a very changeable mood from very depressed and anxious to excitable, angry and energetic.
I have bipolar disorder too so that is probably why I’ve been more effected by the impact on my mood. Im finding it very hard because if this. And as I wait now for my next implant at the surgery, no. 3, I wonder if I’ll survive the next month. I’m also not sure why we do this to ourselves. What about controlling our hormones in other ways that arent so drastic?
I am exhausted and wish more than anything for a break from all of this, the pain, the disruption, the change to me and my body and the horrible treatments. We wanted a child too. But now I’m 43 and I’m sure it won’t happen. I think trying some of the lifestyle changes like diet, exercise, stress reduction and clean living are my next stop.
It sounds like you're having such a tough time of it. Hopefully the hrt will help.
I just wanted to share a possible alternative for you to consider if you don't get anywhere with this treatment. I was offered zoladex with low dose hrt and it just instinctively didn't feel like the right option for me so I've been looking into what my alternatives are. I'm very debilitated by my symptoms, mostly fatigue and back pain. I thought I'd do anything to feel better but this just didn't seem like my answer.
I came across the theory of estrogen dominance which rung true to me. It's based on the work by Dr John Lee (books what the doctor may not tell you about peremenopause and he does one about menopause and breast cancer too) which is for me totally mind blowing and feels such an acceptable explanation for what's going on with me. In a nut shell, it says that estrogen and progesterone work as a balancing act, with progesterone always moderating the levels of estrogen. For some people estrogen can keep rising (there are a lot of theories about why this happens which is quite mind blowing in itself) and the progesterone just can't keep up so you end up with too much estrogen, which leads to growing of all the unpleasant things... Endo, fibroids etc. It can also happen if there's too much cortisol (stress hormone) produced, the body will focus on producing cortisol over progesterone which is fine short term but if you're like me and had a very stressful life, then you're constantly producing cortisol and not enough progesterone and so estrogen is too high causing all the issues. (I have fibroids too)
The 'treatment' for estrogen dominance is using bio identical progesterone cream. No side effects and no issues with using it long term. You still ovulate, you don't shut anything down. It just helps replace what your body isn't producing enough of.
You can also do a saliva test to measure your progesterone and estrogen to see.
I've only discovered all of this in the past 2 weeks and I've done my saliva test, just waiting on my results. I will start the cream in the next few weeks, it's got too be started at a particular time in the cycle. I'm going to be sharing how it goes with me. Some people have a complete resolution of symptoms. I hope I'm one of those!
I'm in no way telling you what to do. I'm just sharing this info as it is was all be to me. It's given me hope when I felt completely hopeless and unhappy with the options the Dr's were giving me. I believe we need to become experts in our own bodies and really listen to what our body is trying to tell us.
Oh wow, that’s really interesting. Thank you for sharing your experience and I will definitely look into what you’ve suggested. I wish the doctors were more forth coming with suggestions such as these- everything they offer is so severe! Best of luck, I hope it offers you the relief we are all craving x
I'm still having decapeptyl injections on number 11 now on list for full abdo hysterectomy in November I've not taken livial I tried it brought my periods straight back and pain was worse than ever . I no my only option is hysterectomy even tho I'm only 38 I want my life back good luck
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