I went to see my gynae yesterday after waiting 2.5 years for my appointment (Covid!). I have been struggling more and more with the pain (I am stage 4) and the gynae was horrified I have been coping without any ovarian suppression for the past 4-5 years. I've been letting my periods run naturally (as I also have PMDD) and trying to cope that way. However, she thinks my pain is getting worse and the endo is probably growing. She is running some tests such as an ultrasound, MRI etc to see the extent to which I may have adhesions or organs sticking together but she has suggested I no longer have periods. She has prescribed Prostap for the next 6 months to put me into a chemical menopause while we gather tests and a clearer picture. I'm not ready for surgery yet but she doesn't know being stage 4 whether a surgeon would operate on me with the amount of damage. I have my first injection coming up in the next week or so and I am terrified of how my body might react (physically and emotionally). Ideally she would like to try and keep me on it without HRT ongoing while doing bone density scans but we know this may not be viable for the long term. Could I please have your thoughts on long-term Prostap, how you have reacted to it and also how you have felt on it? I am mainly concerned about my PMDD symptoms and also things like sex drive and depression - I am only 39 and nowhere near menopause yet.
Prostap & Chemical Menopause: I went to see... - Endometriosis UK
Prostap & Chemical Menopause
Prostap can affect people in different ways. I’ve had 2 rounds over the last 7 years of being diagnosed with endometriosis. The first time was fine I had no symptoms. However this time round I had experienced quite a few symptoms, I don’t want to worry you too much as I want to repeat it’s different for different people!
I experienced the hot sweats, brain fog, tiredness and then not sleeping at night. I also suffered with achy bones. I was prescribed Evorel HRT patches but I didn’t take them as the nurse told me it can take up to 12 weeks for them to take affect. I also suffer with PMDD but it really helped to talk to people about how I was feeling I mainly spoke to people outside my family as to me they were easier to talk to.
Thank you for this - I appreciate the positive post. I also recognise it is different for everyone so I am desperately trying to keep an open mind
Hi shoegalclaire. Don’t panic, your body may adjust relatively quickly. I have recently had my 6th injection for my first round of prostap, this one has been a lot better symptoms wise. Mainly hot flushes for me, nothing else. Surgery is a scary thing, yes but you need to make sure you are sorted x
The ideal situation for me would be just to cope with the hot flushes... I think the main concerns for me are depression/mood swings because of my PMDD and also lack of sex drive. How were those for you?
Hi, just a few hot flushes really. My 6th injection was best with next to no symptoms and physically the best I have been in years. 🙂
hiya, I’m 29 and currently on my 5th month of Prostap. It was given to help me cope with symptoms while waiting for my next surgery (already had 2). Honestly I wish they had given this as an option sooner. I know it’s not a treatment per se, but my quality of life increased a lot. I’ve got little to no pain and side effects are much more manageable. mainly hot flushes, gained a bit of weight and I feel it’s harder to lose the extra pounds now but nothing major. I am however on HRT from day1, and honestly don’t think I’d manage it very well without it. I get hot flushes every night, no exception. My dr prescribed an extra oestrogen gel on top of normal HRT but I haven’t got a I’m afraid it might trigger some symptoms back. Hope this helps you make a decision and you feel better soon!
The weight gain is a worry for me as I already worry about my weight ongoing but I am quite active and I also dance so I'm hoping to keep it off! Energy levels are a concern though.
it wasn’t anything major but as I am also very paranoid about my weight, I thought it was something to consider. Since I had my last surgery in May I tried to be more active too and I go gym with my PT 3x week. I feel way less tired than before and my guess is that I was so drained by the pain that now I am on top of the world!! The more active you are the easier it gets anyway.
I’ve been given Prostap for pre surgical reasons too , and initially had some pretty massive mood swings first 3 weeks . Mood is better now but sleep is awful and hot sweats and brain fog … but I think this may be worse because I didnt take the Tibolone they prescribed alongside as the data sheet scared me . I am waiting for them to offer me something safer like an HRT patch or gel and I am making sure I do weight bearing exercise for bone and joint health and take other supplements to try and lessen the symptoms in the meantime . The lack of heavy unpredictable periods has been liberating though so that’s a massive plus ! Good luck 🤞! X
Hi.. I was put on Prostap injections for 6 months in 2020, l still continued to bleed heavily for 2 months after l started on the Prostap injections then the bleeding stopped but the side effects from the Prostap were horrible. I cried all the time and was always in a bad mood and had terrible hot flushes, l noticed my hair was falling out a lot. I had my surgery in early 2021 after l had completed the 6 Prostap injections and to tell you I feel so much better, I sometimes have heavy bleeding during my period and a bit of pain but it is not as bad as it was before I had the surgery. I hope this helps and Good Luck🤞🏾❤️😍🥰
thanks for your reply, my gynae doesn't want me to have periods anymore full stop really so this isn't a option for me
Hi there, I was on and off Prostap for nearly 3 years in total (with one stint being nearly 2 years) from the age of 42. For me it was marvellous. My periods stopped almost immediately and so did the pain etc. I had endo stage 3 and adeno which was really affecting my quality of life. The first few weeks on the injection were a rollercoaster. Huge mood swings, headaches and oddly hangover after the slightest amount of alcohol. But this soon settled down. I had hot sweats and heart palpitations so reluctantly took HRT (tibilone) this too worked really well. In terms of treatment, Prostap was the best thing I tried before having a hysterectomy. Since the hysterectomy, I have my life back. Good luck. I really do hope it works for you. And feel free to DM if you have questions.
Thank you so much for this! I was beginning to lose hope that nobody had a positive experience, especially if being on it for a long time. Thank you for giving me hope
Hi I'm also 39 and have been on prostap for over 6 months with hrt tibolone which has really helped me massively. I am also stage 4 endo and I'm on the waiting list for a hysterectomy. My gynaecologist has kept me on prostap till I have a date for surgery. My endo plus another medical condition has stopped me from working so I'm hoping that when I've had my hysterectomy I will be more like my old self. I haven't had many side effects apart from hot flushes the odd times and weight gain but this could be due to my other medication. My injections however don't last the full 12 weeks and seem to wear off around 9-10 weeks and the pain comes back. I also have a little bruising a few days after the injection but having the injection is not as bad as I thought it would be.
thank you for your reply. I’m sorry to hear your endo is so bad. My gynae is giving me 4 week injections instead of the 3 month ones, I am hoping this means they don’t wear off like yours do? But who knows?!
just wanted to add my mostly positive experience to the mix! 3 months ago I was bed ridden in constant pain and taking medication to knock me out to get me through the day thanks to my Endo! 😞 I am a single parent to a 9 year old with no support around us. I had not worked for 4 months and was struggling in every way. I have just had my 3rd injection. The difference was almost instant I am now back at work ( only part time) has a few bad days but now also able to exercise (swim or walk currently) I read the horror stories and did a bit of research but tbh I just needed a form of my life back and the injection with the tibilone (sweats, hot flushes, headaches and insomnia not fun) have helped me achieve this. I would say it definitely wears off week before due and I am having more painful days this month (month 3) but worth it for me and my child. Xx
Thank you so much for your reply, it is so appreciated to hear a positive experience x
Prostap only treats symptoms associated with periods so can help rectovaginal endo but it won't treat endo or stop it growing. Is it a specialist at an endo centre advising this ?
Where in the UK are you as treatment pathways can vary.
Hi Lindle, thanks for replying. She essentially wants to shut down my ovaries and stop my periods, I think being stage 4 there is no hope now of treating it. She is a consultant gynaecologist specialising in endo.
Have you ever had excision for it? Severe endo must only be treated in a specialist endo centre. In England centres work to the NHS England treatment specification which is clear that medical treatment isn't appropriate for severe disease.
Endo makes its own oestrogen within its cells by a process that doesn't involve the overies which is why shutting them down doesn't stop it progressing. Stopping periods might help pain as said but the risk is that it will just continue growing in the same way as it can after menopause.
When and how we're you originally diagnosed with stage 4?
I was diagnosed stage 4 in 2006 via laparoscopy. I had a chocolate cyst on my right ovary. It then reformed in 2009 and I had a further lap to remove it. I was then put on to Depo for 4 years but had to come off it to TTC (I did finally via IVF) but ever since my son was born I've left everything alone and just tried to cope with the pain every month. I also have PMDD so trying to manage both conditions is hard.
So the endo centres first came about in 2009 so doctors knew nothing about them at that time. But a gynaecologist now should know that is the only place you should now be. There are specific referral procedures that are a bit too involved to get into here so will dm you. X
I don't know why but I can't reply to your messages or message you. There seems to be a block somewhere. But if you join a group called Endorevisited we can give you all the info you need to get the care you need. x