Hi!Right... I'll try to get straight to the point! I started decapeptyl around a month ago and I'm due my 2nd jab on weds. I'm 49 so perimenopause/ menopause age. I have a diagnosis of endo and endo so bad I'm now on decapeptyl and waiting for a specialist endo appt. Ive not had the best month, felt under the weather and physically and mentally unwell, fatigue has been the worst. Ive been getting palpitations and anxiety and night sweats. Today I had a very dark episode of suicidal thoughts and ideation, it came out of no where and whilst ive had mental health issues before, this episode was intense and scared me. So I have some evorel 25 patches and utrogestan. I'm convinced that my feelings are due to being in chemical menopause. Should I slap on a patch and take utrogestan? And see if that helps? I had a menopause dr but he was beyond useless and gas lit me regarding endo, so i no longer wish to see him. Is anyone else on decapeptyl and regular HRT? Any advice would be gratefully recieved. Thank you in advance xxx
Decapeptyl and HRT and endo!: Hi!Right... I... - Endometriosis UK
Decapeptyl and HRT and endo!
Hello i couldn’t read and run. I was previously on decepeptyl injections, had to come off of them as my mental health went into a black hole as I call it. I don’t have mental health problems. This injection has a lot to answer for, for me anyway. I know others who have a more positive story.
I would speak to your GP about your dosage of HRT, I was put into 2 different patches. I’m off all of it now, I feel a lot better although my adenomyosis and endometriosis symptoms are getting worse again x
Thank you for replying. I have slapped a patch on. And will take utrogestan tonight, I'm also going to make an appt with the dr tomorrow. It was just a scary feeling, like I had no control and my thoughts were telling me I was better off dead. My experience with the menopause clinic has been a nightmare, and referral to gynae has been long, for the gynae to then refer to endo specialist which is another 8 month wait. Ive been waiting for over a year for mental health appt, I feel there's no where to turn. So thank you for replying to me, at least I know someone out there is there xxx
Please don’t ever feel that you would be better off dead. As that isn’t the case. I do think having these gynaecology conditions mucks around with our mental health - I have up and down days and it’s horrid.
You can ask your GP to expedite your referrals based on how you feel / how bad your symptoms are. I have done this several times, it’s you going through this & only you know how you feel.
X
Thank you so much for those lovely words. It's been a rough month and a tougher day. I'm feeling very fragile but I'm resilient and know that tomorrow will hopefully be a better day. I will speak to my dr and possibly my consultant as I feel it's unfair for me to wait further when I should've been referred direct to the endo specialist, menopause is a tough time. Thank you so much for being there, it means so much. Big hugs xxx
Your welcome. PM if you ever need a chat 💕 at least we all know ok here how others feel x
Hi,We've started the same medication sat roughly the same time with the same symptoms and same MH issues.
I'm also struggling with the heart racing at night!
Same MH issues to and generally I get really bad depression and SI when on hormones. I'm in the 50 patches and although things have been rocky, I've not hit rock bottom yet. Do you have a good support network? How are you doing this morning? Is your GP supportive?
Please DM if you don't want to publicly chat!
Big hugs
Hi! Thank you for replying. Sadly I don't have a good supportive network, it's a very lonely place to be. My gp changes because I can never get in with the same one! So I have to keep repeating my problems! I'm just so tired. It seems that regular gps just don't know what to do with me! I have an appt with a nurse practitioner this morning, so will hopefully get some support. Again thank you for replying. And big hugs to you xxx
Yes I know that pain with the ever switching GPS. When I call for appointments I just ask for the same three every time now. It's really difficult when you are in that position and your support network isn't great. I find forcing myself to go and do something "normal" like going to a coffee shop and reading can help me shift focus with my MH, in no way a cure but it just forces me to have time to stop and process.I absolutely feel the tiredness too, I've been there. I found lions mane supplements have helped me with brain fog, it hasn't stopped my tiredness but it's cleared my cloudy head feeling, I like four sigmatics "think" blend.
Do you have a local short term MH team that you could ask to see in an emergency basis? If not there are lots of lovely charities who have people you can do short term talking therapy with - sometimes it helps in those moments just to get it all out.
I'm away for jag 2 today. I'm struggling with my own short temper so hoping this will help!
Out of curiosity what pain meds do you take? Xx
I do have a mental health team who I can contact in an emergency whilst I wait for an appt, I sometimes forget they're there because my brain doesn't think properly! Ive been taking paracetamol, codeine when necessary and ibuprofen, but now I'm suffering stomach spasms! And im not even taking medications in a timely manner! But over the past 2 months ive never taken so many pain meds! I do walk my dog and that helps me, and I watched the greatest showman and fools and horses yesterday to lift my mood! Thank you for the advice xxx
Haha me and my daughter were listening to the sound track of the Greatest Showman yesterday full volume and singing along - it's so brilliant. The Lord of the rings trilogy is my comfort blanket, whether it's the movies audio books or sound track. And music! I struggle with codiene. I actually only agreed to decapeptyl in the end so I could try to come off of it as it makes me drowsy and gives me and enormous hangover. Personally I also feel like it had lost all effectiveness at this stage. I find regular paracetamol and TENS machine really helped me.
In the last ten years I also cut out gluten, alcohol and meat (and raw onion) which has helped me massively with energy levels as it turns out I was super intolerant to all of them and they were causing me massive inflammation.
Yes I agree that getting out helps, even if it's just short walks. I got heavy into macro photography of insects and mushrooms and lichens which can help me lift my mood massively xx
Hi
I've been on and off decapeptyl for years and have always been commenced on tibolone (HRT) at the same time. It is usual to have these side effects when on decapeptyl but I think you should be on some form of HRT, contact your GP
Take care and best wishes
Angela x
Thank you for your reply. I'll be speaking to someone today about it all. Fingers crossed I can find a resolution to it all! Xxx
Hi, I’ve been on the same injection for nearly 21 months while I wait for a surgery date and they’ve absolutely changed my endo symptoms for the better (stage 4 with bowel and bladder adhesions etc).
BUT.
The menopause symptoms were horrendous to start with. Very similar to what you’ve described. Took a few alterations to get the hrt right but it is now much more manageable. Not 100% but nothing like at first. I have a 25mg evorel patch and a 100g progesterone tablet. Keep speaking to your GP/nurse etc to get the dose right for you xx
Wow 21 months waiting! And it's great that you've seen a difference with your endo symptoms, I hope to see the same as you. I didn't want to go on HRT as whenever I took it in the past it made my flares worse and caused a histamine reaction. But with the decapeptyl stopping estrogen production, maybe the HRT will be at a more low constant rate, rather than roller coasting as it does during perimenopause! I just feel so sad about it all. Thank you for replying to me. Fingers crossed I can find a resolution to this horrid situation. Big hug xxx
Sadly yep!! It’s joint surgery with a bowel surgeon and potentially bladder too.
It’s much more instant with the menopause symptoms on the injections. Everyone is different but her has definitely helped me. Just make sure you tweak dosage if needed. Keep on going!!
I was on the same injection and tibilone.,went into perimenopause and swapped to a patch. This was about a 2 year period of time. The patch for me was amazing relief!
I think you can give it a go?
Thank you for your reply, I think the way forward is definitely going to include HRT. Xxx
There’s a lot of misinformation about it. It’s actually amazing in my experience. worse case is one doesn’t suit you. Just like changing contraceptives. I recommend finding some sticky stuff to go over the patch. Mine kept falling off and I wasn’t absorbing. I use my friends stoma sticky stuff and that works for me. I tried tattoo dressings, which a clear but they didn’t work for me. I guess a normal dressing might be something to try? Xxx
Hi. I’m sorry to hear about what you’re going through. I am 46 and have been on HRT for 2 years. I also have bipolar. I have been told that I also am going to have to have those injections. Im terrified due to my mental health. All I know is that I was told that before they can operate I have to come of all HRT as the oestrogen is what feeds the endometriosis and is making it to dangerous for them to operate yet. I know the desperation of when something starts playing with your mental health. It’s a silly question but are you able to get hold of any doctors? If your in the U.K try and contact mind, Hear us or endometriosis u.k. sorry I can’t be much help xx An approach I was thinking to try is herbal or Chinese medicine but it’s finding a decent place to go. I’m also intolerant to progesterone. Is poor women. It’s not easy x
Thanks for your reply. I do have access to emergency mental health team whilst I wait for a mental health appt. It is tough being a woman with endo, and even tougher when not listened to. I hope you find a way that works for you xxx
I have a chronic history of debilitating endo lasting over 35 years. I’m four years menopausal now. My symptoms were absolutely dire. I wish I had gone on HRT sooner. I did NOT want to and fought it for too long….for fear of it aggravating my lesions etc. I’m on twice weekly low dose of oestrogen (patch) 50mg and 100mg of nightly Utrogestan. My life has improved immensely. I don’t drink and there’s a bloody halo over my fridge!! 😇 I’m pretty boring, but pain free. Don’t ever feel like killing yourself. A friend of mine did last week. The impact is profound on the people left behind. Come on here if you do. We at least understand. Best wishes. Nina.
Thank you for your reply. I know the pain of suicide as my mum committed suicide when I was 16, and the pain never leaves those left behind. It was just an overwhelming sense of this big dark thing telling me that I had nothing left to live for and it was time for me to go because I'm going to die anyway, it was telling me that I had nothing left to do here and everyone that I left behind would be ok, it was quite frightening as I started to think about drowning. It was then that I realised the mental health episode was caused by the decapeptyl and the fact that I wasn't taking add back HRT. So I quickly put a patch on and took utrogestan last night. Im so thankful for this forum as all you lovely people have responded and made me feel like I'm not alone. I'm very sorry to hear about your friend, it's so sad. Big hugs to you xxx
Hello, lovely ladies. Thank you to you all for responding to me with your messages of advice and support. I went to see the nurse practitioner and she explained more about the jabs and endo as I was quite confused with decapeptyl and HRT. If endo makes and feeds off estrogen, then surely all estrogen should be eliminated. But after speaking to the nurse practitioner that's not the case. Decapeptyl shuts down the ovaries causing a chemical menopause, but the body still needs estrogen to function both with mental and physical health, so if estrogen is kept low, the body can keep functioning. Decapeptyl stops the hormone fluctuations experienced during perimenopause, so the HRT replaces a small amount that's constant and not fluctuating. I'm on evorel 25 and 100mg utrogestan, I'm hoping this helps my symptoms, when I've tried HRT before I always get a histamine reaction, she told me if this happens to take antihistamines, if it becomes intolerable she could try me on tibilone. She also recognised that I haven't been listened to previously by other consultants and mentioned complaining to PALS. She also acknowledged that I've suffered with mental health for years and that if my mental health hasn't improved within the month then I need to have an honest conversation regarding antidepressants. I've been under the mental health team for 2 years and have yet to be seen by a psychiatrist/ psychotherapist. I feel so sad for every woman that is suffering with health and not being listened to. I wish you all well with your journeys and send big hugs to every one of you. I hope I can be of help, as you all have helped me. Xxx
Endo/HRT/Zoladex 
are decapeptyl injection side effects of menopause the same as a real menopause
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HRT that doesn’t make Endo worse ? 
