Any experiences with Decapeptyl injection? Starting on Monday don't know how to feel

[Emmalouise1310]

Hiya everyone, Just wondering if anyone has any experience or advice with the Decapeptyl injections?

I am starting on Monday after having 3 laparoscopies since 2021. Trying this to understand if a hysterectomy will be the right decision for me as my pain and flares have continued even after treatment. Although a bit scary I am willing to try new options to understand what can help me.

Little worried about starting the injections and not sure what to expect next week. So if anyone has advice or willing to share their experiences it would be really appreciated.

Thanks

Emma 💛

[SupersonicSheep]

Hi, I had decapeptyl injections this year before having a hysterectomy last month. I had adenomyosis and fibroids. I remember being worried about how I'd feel and mood swings etc. To be honest I was fine in that regard. I did find though that I ended up bleeding a bit every day (instead of my usual week of crazy bleeding). I'm not sure if this was the decapeptyl or the estrogen patches they gave me though. I feel that the decapeptyl definitely helped with the pain. I was almost pain free! I guess everyone reacts differently, depending on what they've got going on, but for me the decapeptyl definitely made the bleeding and pain more manageable.

P.S. I'm in Ireland too! 😊

[Emmalouise1310 in reply to SupersonicSheep]

Thanks so much for the response I really appreciate it and is good to hear experiences from other people in this situation. Nice to not feel alone 😊 I'm going to try no add back for the first month but if it's not manageable I will get some add back. But anything to help the pain is welcomed

[1Poppy1234]

Decapeptyl was amazing took most of the pain still had the uncomfy feeling of being like pregnant feeling but it was good. I didn't bleed but my teeth ached and bones ached after six months of it. I ended up on it over a year now hrt towards the end tried tibolone as the oestrogen is artificial and seemed to work better for me.

[Emmalouise1310 in reply to 1Poppy1234]

Thanks for the reply I really appreciate! I'm hoping I will have a similar experience with some welcomed pain relief 🤞

[1Poppy1234 in reply to Emmalouise1310]

It was a game changer for me. Hope it is for you too. 🙏😊

[Jem33]

hi I was on decapeptyl and add back tibolone HRT for 6 months in 2023 before hysterectomy and oopherectomy in Jan 24. To be honest I found the menopause symptoms (exhaustion, interrupted sleep, hot but not flushed, sore joints, brain fog) worse with the injections than surgical menopause. I’m 40 and was incredibly nervous about having such a major operation so young if these were going to be my long term symptoms. Thankfully they are not and I’m now 8 months post surgery and still have some hip/pelvic pain and the odd random abdominal pain which they are investigating. They know I have bursitis in my hip so they don’t know at this point if it’s related to that or if I need my HRT (still Tibilone) adjusted.

It’s such a hard decision but it’s yours to make and you have to weigh up whether you can accept the outcomes after. I tried to think about the worst case scenario and anything better than that was a bonus.

Wishing you the best of luck!

[Emmalouise1310 in reply to Jem33]

Thanks so much for the reply, I hope you are feeling on the mend from your surgery ❤️ thanks for sharing your experiences it's good to hear from and talk to people going through similar situations. I'm hoping this trial on the injections will help me to understand if a hysterectomy is my next step but as you say it feels like such a big decision to be making! Thanks again for the advice and wish you all the best also

[Pcosandendo in reply to Emmalouise1310]

My experience was similar to Jem, I had injections and hrt earlier in the year for 4 months after excision surgery to give my body a full reset. I really struggled with the menopause symptoms , 35years of age and honestly felt like i was living someone else’s life. Now that all treatment has stopped and chemicals have left the body , I am getting back to my normal self now.

I really hope you have a positive experience and if you are struggling with the menopause symptoms ask for another hrt. I couldn’t do that as it was only temporary and for short period so I rode the storm. Good luck and if you’ve any questions or need a chat message me xx

[Cocoacupid]

hun I had this injection back in march unfortunately I had a bad side effect but at least my gp was very good 👍. It affected my mental health over night they said that should have no side effects etc but I did . As I have autism and fibromyalgia it affected me more quickly than others . If I was told I had to have this again I would say no as I was mentally very unwell . I was told if you do have anything it will be hot flushes but the thing is what they don’t tell you is that it puts you in a synthetic menopause as your ovaries are switched off so it stops endo growth so they can see better in your operation. This was my experience but others may not have as bad reactions as myself . I don’t want to put you off or anything . Maybe speak to your consultant again or your gp who will be able to explain in more detail exactly what happens. Just take it easy and look out for any symptoms . Take care . When my gp told me in more detail why I was experiencing the symptoms I did she made sure to look after my health as I wasn’t given any advice apart from as I’m young I shouldn’t have anything other than hot flushes . This for me was not true. But the hospital endo nurse tried to tell me I needed mental health help etc but i didn’t as I had been so well for the past three and a half years she tired to treat me like everyone else and not with care plan approach which is tailored care needs for an individual. There is an endometriosis guidance group that had a lot of information about the injections and other treatments and things this is a face book group. Take care x

[Emmalouise1310 in reply to Cocoacupid]

Thanks for your reply I really appreciate it and I'm sorry to hear you had such a hard struggle also effects on your mental health. I really hope you are doing better now I appreciate hearing your experiences and advice. It's important to think about the mental toll chronic illness and treatment can take on us as well as the physical symptoms and again the importance of reaching out for some help as well if needed. Take care also x

[Cocoacupid in reply to Emmalouise1310]

Thank you x was diagnosed last year at the age of 37 with deep infiltrated endo obliterated pouch of dugloss rectovirginal endo and endometrioma s so had a cystectomy last year but as I need a colorectal surgeon had to wait a year for that surgery which I had in may. It helped a tiny bit It now all my pains etc have come back already struggling with bowel symptoms again . Thankfully am having the coils removed and replaced by my consultant but I was supposed to have a follow up from surgery after three months but it will be over five months when I’m seen but I just take each day as it comes . As I’m nearing 39 I may just ask them for a hysterectomy these pains are awful again it did stop me from having restless legs and. Groin pain etc but I did have bleeds on the injection but I think that is normal while you ovaries are tuning off . It took 27 years to get a diagnosis as started periods at ten years old a month after my birthday . Am just glad I have a reason for pain etc . I feel like I was just made to suck it up when I bleed heavily and then I couldn’t walk and bent over being sick and feeling like my insides every month were being ripped apart. As I went to the doc every month in my mid twenties was offered the coil and whiched helped the bleeding but not the pain. Just hope your journey will be one that you don’t have to keep fighting that you will get through this and get help with the treatment etc I don’t have children but I have lovely nieces and nephews and lots of fur babies . The thing is that I try and remain positive the more positive I am I think that shows through to others . Hoping it won’t be a too long a wait etc and also see if they can give you add back hrt tibolone to help I wasn’t even offered that . Even though the injection lasted three months . Xxx

[LaikaSpaceDog]

Hi Emma, I am on Decapeptyl at the moment - been on it for a few months now. I have had some of the common side effects - hot flushes and achy joints, but my endo symptoms are so much better! I would take the odd hot flush any day over the crappy endo pain.

I hope tomorrow goes well. xx

[Emmalouise1310 in reply to LaikaSpaceDog]

Thanks so much for your message and letting me know your experience. I am defo up for giving it a try and hoping for the best now, less pain will definitely have a positive impact! Are you having some add back estrogen to help with side effects?

[LaikaSpaceDog in reply to Emmalouise1310]

Yep, I’m trying out add back oestrogen in different forms which has reduced the side effects but the topical ones (patches and gel) have given me a rash - it is never simple is it!

[thebird1]

Hi, I've just had my 5th injection today. Game changer for me too. I have the coil too so no bleeding at all. The consultant didn't want me to have HRT for 3 months ( be hormone free) to shrink any adhesions. Going to start Tibolone next week as will be on injections for over 6 months. I'm on the list for a hysterectomy/oophorectomy/ excision surgery but there is a 65 week wait.I'm 47. I don't feel any more tired than I did being perimenopausal anyway. I have the odd small hot flush, particularly in the days following the injection but nothing major. The only symptom i really have is vaginal dryness but creams help. My mood is better as I'm not in pain.....still have a bit of discomfort the week before the next injection.

It doesn't suit everyone but it is probably worth a try. Good luck x

[Southwestsmiler]

Hello. I am due to have my first injection and start Tibolone on Thursday coming. It's been an absolute nightmare getting my GP to put this in place for me after consultant recommended this as interim treatment at the end of July! I'm game but a little nervous given my GP certainly seems against the use of Tibolone and/or staying on the injection beyond 3 months so I know I will have another fight on my hands to ensure this doesn't lapse over the Xmas. How has your first few days been? I am feeling a little nervous about the changes in hormones where I have a mood disorder and Endo, awaiting hysterectomy. Switching off my ovaries is hoped to improve my mood, but equally alot of evidence to suggest menopause ramps up bipolar episodes. The main reason I'm going for the hysterectomy is because I bleed now to an unmanageable level and have exhausted progesterone to help with this which equally impacts my mental health. Oestrogen is not an option right now with the endo, neither is progesterone on bleeding or mental health, after trying different forms of progesterone only for 7 years, so hoping Tibolone is the best way to go with add back. I was hoping the injection would stop the bleeding but I'm hearing otherwise but equally need to test shutting down the ovaries regarding mood , to see if they are coming out at surgery also.

[Emmalouise1310 in reply to Southwestsmiler]

I'm settling into it now the first week wasn't too bad at all , just found myself running pretty hot all the time. The second week now is a bit rougher having a lot of pain in my ovaries and some headaches. But I've caught up with my gynae nurse who has reassured me although not nice it's a normal side effect and just to take a few days to rest and let my body get used to the injection and all the changes! Happy to say I haven't noticed changes in mood and I feel a lot less fatigue which is a real positive. I hope your treatment helps as well and that you can get some positive relief from it also. Xx

[Southwestsmiler]

Thank you for sharing your experiences so far and hope it goes well. I start this afternoon!