Help! Decapeptyl injection and HRT? - Endometriosis UK

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Help! Decapeptyl injection and HRT?

Endoff profile image
4 Replies

I’ve been on this forum for a while but this is my first post and I’m hoping you can help me. I had a gynae appointment last Thursday but couldn’t see the Endometriosis Lead consultant (who treated me before, did a lap resulting in a right ovary and Fallopian tube oopherectomy 3 years ago) I’ve experiencing excruciating pain for 6 months now. My recent vaginal scan showed a cyst (dermoid or endometrioma) on my left ovary and the MRI results were shared with me last week. According to the radiologist and the gynae there’s no endometriosis, which I doubt since I know residual endometriosis was left from my previous lap as mentioned on my care release notes from Dec 2019.

I have been offered a Decapeptyl 3month injection and HRT, and been told the laparoscopy waiting list is at least 6months+; but there’s a lot of risks for a lap because my bowel is stuck to my womb (been told I could end up with an ileostomy or colostomy bag!) and that I have Central pain syndrome.

Honestly, I feel I’m being fobbed off with a 3m injection that is highly likely to worsen my symptoms and pain for all that time and that I’m really scared to go for together with HRT which I never wanted to go on.

Current pain relief is naproxen (2/day), codeine (3-4/day) and paracetamol; and my GP has prescribed Gabapentin this week to add to this mix although I can’t bring myself to start it yet!

I’m at the end if my tether :-( and need to ring back the hospital with my decision tomorrow so any comments or advice would be greatly received.

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atealdeer profile image
atealdeer

Hello, sorry you're in so much pain. I started on Decapeptyl and low dose HRT back in January. Mine are one a month, rather than the larger three monthly dose. I might have misunderstood you but it sounds like you're expecting to just have one three monthly injection and then no more. I personally wouldn't do it for just three months because my first month was excruciatingly painful and second and third weren't great. It sounds like you've been warned that it takes three months to settle down, as was I, but that doesn't really make that first month any easier.

I'm about ten days past my fifth injection now. I have loved not having periods and cyclical pain (which was sometimes month-long) and I'm quite scared of going back to all that. I will be reviewed at the end of the six month course, but it has affected my blood sugars (listed side effect and I'm already diabetic), so I'm less sure I'll ask to continue now. It isn't perfect, but after being in so much pain for so long and living with a similar painkiller plan to yours, it's amazing to me to have days (even weeks) at a time when I take absolutely nothing for it. It's a really personal decision and I really thought I wasn't going to do it, but on the day I had to decide, my bladder issues had ramped up and I knew I had to try it.

I just wanted to check whether you're in general gynae or at an endo specialist centre? I assume the latter because you have evidence of bowel involvement, and if you aren't, you should be able to be referred on. Where are you that your waiting list is "only" 6months+? Again, I'm hoping that's because you're at a specialist centre not general gynae. I have been told very different things by general gynae vs the endo specialist I paid to see. The latter told me that an MRI wouldn't necessarily show endo because the deposits can be so, so small and we know endo pain levels and the size of deposits are not directly related, so I wouldn't have thought your MRI could totally rule endo out, especially with documentation saying some was left in your previous lap!

Endoff profile image
Endoff in reply to atealdeer

Thank you so much for your reply. It is very helpful that you’ve shared your experience with me and I’m so sorry you’re having to go through this too. It sounds like you won’t continue with this treatment. I wonder what’s next for you? As I mentioned, I wasn’t able to see the Endometriosis Lead who I had dealt with in the past, so it was a Gynaecologist and Laparoscopy specialist I had my appointment with. I was offered a 3month Decapeptyl injection, rather than the monthly injections, and there was no mention of what length of course (!) I’m really worried about the secondary effects being worse than the pain I am in now and I still need to contact the hospital - I couldn’t today due to a busy day at work but I have the day off tomorrow (Tuesday) and will phone then.

I’m planning on saying no to the injections + HRT and request to be put on the waiting list for a laparoscopy (however long that would be - I took that “at least 6 months” would probably mean closer to a year but we’ll see).

In an ideal world I would switch to the Endometriosis Lead since I can’t understand why I wasn’t referred to him again in the first place. Continuity of care? We wish! I’m considering booking a private appointment with him, who I trust, if only for a second opinion.

I can add to the post with an update to keep you up to date if you’d like to. Best wishes x

atealdeer profile image
atealdeer in reply to Endoff

Hi, sorry I missed your reply! How are you getting on? I have my sixth injection this week then a review with gynae at the hospital at the end of the month. I still don't know what to do next, to be honest!

Endoff profile image
Endoff in reply to atealdeer

Hi, thanks for your reply and apologies it took me a while to respond as I’ve not been active here. I said no to Decapeptyl injections and asked for a second opinion from the Endometriosis Lead, thinking I would have to wait months for, but he called me within 48 hours and we had a phone consultation (I had already booked to see him privately too!) I have been put on desogestrel - the progesterone only mini pill, which combined with the Mirena coil it should help and it has. Been on it 3 weeks now and mostly just taking 1 x Naproxen + paracetamol/day. Laparoscopy will be a last resort given my risks. How are you feeling? Wishing you all the best. Keep me posted x

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