Anyone else found this......

[Pureunicorn]

Hi, I've been on decapeptyl injections for 3 months and I can say that they have helped with my endo pain 👍 still have some pain but so much better, I've been suffering with hot flushes so I've caved and started HRT!! But I've noticed that since taking the HRT the pain on my right side has been getting worse 😔 has anyone else had this happen? I'm trying so hard not to have my meds as my specialist has said that if my pain isn't reduced then theres no point having a hysterectomy, I was doing so well and now I feel like I'm going back to the way I was 🥺 xx

[Whoisthis]

Hello does your HRT have oestrogen in it? And what’s the consultants logic in relation to doing a hysterectomy? I don’t understand why he or she wouldn’t give you on if that’s even what you need unless the pain is under control? Seems a bit muddled up to me?

So you have confirmed endometriosis, have you had surgery to remove it?

Why do you need a hysterectomy?

[Pureunicorn in reply to Whoisthis]

Hi, thanks for ur reply, yes I think my HRT has got oestrogen in it, which is probably why I'm getting the pains bad again! Yes I've confirmed endo stage 4, ive not had surgery on it as the first hospital wouldnt touch it, just took pictures and referred me to my endo specialist, I've had an MRI and when I have surgery I've got to have bowel specialist there too. I've tried everything and nothing has worked so they put me in to a medical menopause, has this seems to have worked the best way forward now is a hysterectomy, which I'm happy to have, I cant stay on these injections for the next 10+ years waiting for natural menopause, I dont want anymore children (even if I wanted too) so I dont see the point leaving it so it just gets worse, its affecting my family, life and work, I'm now just waiting for a date, thanks again for ur reply x

[Cactus80 in reply to Pureunicorn]

Hi. Thanks for posting this. Im in the same situation as per surgery. Been on the list for bowel surgery since January and was told up to a years wait for the bowel surgeon. No idea how long now due to covid. Pain increasing with constant leg and back pain like sciatica and endometrioma growing. Im starting decapeptyl injections with add back tibolone soon and a little bit anxious about it. Hope your pain passes and you get the answers you need xx

[Pureunicorn in reply to Cactus80]

Hi, thanks for your reply, before the decapeptyl injections I was on so many meds! It did take till my 3rd injection to notice a difference, so I would say give it time to work 😊, I didnt start taking tibolone till after my 3rd as I wanted to try and not take it, but with the hot weather and the hot flushes I just couldn't cope anymore 🥵!! But I'm now starting to think that the hot flushes maybe better then the pains I'm getting now 🥺, good luck with urs and try not to worry (easy said then do, I know) are u having it monthly or 3 monthly? I have mine monthly, due to suffering with other hormone treatments xx

[Cactus80 in reply to Pureunicorn]

Monthly injections. Just been finalised with my specialist on Tuesday and they have passed the details to my gp so to phone gp next week to make arrangements. Everything about endo is so unpredictable. Never known anything like it. Thanks so much for your help x

[Aw19]

hi

I have had 5 months of decapeptyl injections (only planned for 3 months but due to covid they kept me on it)

I persevered without the HRT, my endo nurse advised not to take them unless I really had to. I had 90% of the side effects for the first 2 months (it was awful), but most of them did not last too long.

I must admit that the hot flushes have been the only side effect that has been persistent. I sleep with a fan, light pjs and keep windows open when I can.

You do have to take HRT if you go into 6 month's of the injections but you have to stop taking them 6 weeks before surgery so I have not had one since July because I am booked in for a hysterectomy in 2 weeks.

I still get hot flushes but they are getting better.

Keep going, you can do this 💪

[Pureunicorn in reply to Aw19]

Hi, thanku for ur reply, the only side effect I've had is the hot flushes which I was coping with, but they have just got worse, I have a fan in every room 😁 and windows open, the hot weather hasn't helped! My specialist said that by the 6th injection I would have to start taking the HRT anyway, so my GP said to start now and if I get any side effects from the HRT I can speak to the endo nurse (when she eventually calls) they have referred me for my op, but I'm not sure when it will be! Hopefully the endo nurse will be calling me in the next week or so to give me a rough time scale, I'm not sure how long u can be on the injection so that will be a question for me to ask 🤔

Are u having a total hysterectomy? Good luck, Hope everything goes ok with urs and keep us updated xx

[Aw19 in reply to Pureunicorn]

The weather has definitely not helped has it, I am so glad of this cooler weather ... i just go and stand outside my back door to try and cool down a little.

I was originally told that I couldn't be on the decapeptyl for more than 6 months, however that has changed to 12 months with HRT from the 6th injection. I agree, if you will be on them for more than 6 months then you need to do whatever you can to try and control the symptoms.

I will be having everything removed but they're going to try and leave my ovaries due to my age. My Dr has said that they may need to be removed at a later date if i am still suffering so fingers crossed this op works.

My injections are wearing off now so I've been suffering this week 😫... i am counting down the days.

I will keep you updated 😊 xx