Any advice or experiences with decapeptyl

[Pureunicorn]

Hi, so my gp as written to my endo specialist and they have decided that I should try decapeptyl and tibolone HRT, I was just wondering if anyone else has been on this or is on this and could give me some advice and there experiences with this, I'm due to have it friday and with lock down I dont feel I've had all the info and normal exercise u would normally get before starting something new, any help or advice would be great, even if it's just to make me feel not so nervous about it all.

Thanku in advance xx

[MMich15]

Hi there 😊

I was put on decapeptyl injections prior to having surgery to remove a large endometrioma. They were hoping the injections would shrink the cyst to reduce complications during surgery.

Essentially what it does is shut down your ovaries and induce a menopause state. I didn’t get prescribed HRT to start with because they waited to see how I responded to the injections and any side effects I might have.

Personally I reacted quite well to it. I was on the injections for about a year the first time, and went back on decapeptyl a second time when new endometriomas started growing after I changed back onto the contraceptive pill.

After about 2 months my periods completely stopped and so did my endometriosis symptoms (pain, bloating, cramping, bowel issues). It’s the only treatment I’ve ever been on that’s actually stopped cysts from growing. Strangely it was also the most stable I felt mood wise too. Other treatment has tended to have a significant affect on me mentally.

Side effects I had ranged from hot flushes (luckily nothing intolerable) to bruising on my legs. Eventually what pushed it over the edge for me was the brain fog and feeling lethargic. I’m already anaemic so I basically became a bit of a zombie and I noticed it affecting my work. I went on HRT at that point which helped a bit but then I was hitting the decapeptyl “limit” which at that point I was told was 9 months but they keep changing the goal post - it can have damaging effect to bone density - think the complications women in menopause go through.

I hope that helps but I have heard many different experiences women have had on it. Something to note, decapeptyl are 3 month injections so if you’re not happy with it you’ll have to wait a bit for the effects to fully wear off. But after I stopped treatment my periods came back about 3 months later.

All the best to you 😊

[Pureunicorn in reply to MMich15]

Hi, thanku so much for ur reply, the gp said I'm going to have a monthly one first to see how I get on with it, I'm hoping I wont have to be on it too long as I'm probably looking at needing a full hysterectomy, I'm seeing my endo specialist in july so hopefully I will get some more answers then too. Hope u are well and again thanku so much x

[Lofty1589]

This is precisely what I am on! My first injection was in December. The only benefit I have is that my periods have stopped.

I still have random bleeding, constant pain and bloating Not to mention awful hot flushes as well. I did my research before and at the point of it being offered, I was desperate for some relief. But I’ve just not had that.

It does work for some ladies, but it really hasn’t in my case. It really isn’t something that should be thrown out there as a “treatment” because it really throws your hormones out of whack and can potentially affect your bones.

[Pureunicorn in reply to Lofty1589]

Hi, thanku for ur reply, I'm sorry to hear it's not been great for u, this is the last thing I can try so I'm hoping this will work at least untill I can have my surgery! I've been on the depo injections but there just not helping anymore and I'm getting such bad headaches and hot flashes (which I can cope with most of the time 😊) I hope u can find something that works for u, as I know its horrible to be in pain xx

[Chicken2012]

Hi

I had my first of monthly injections in March before Lockdown and had HRT . Side effects at first were hot flushes nothing too bad, tired and awful mood.

After the second injection it stopped my period and the awful monthly pain, with endo and I also had a 5cm cyst with hope of reduction.

I had my last injection a few weeks ago and due a scan next week and on waiting list for a follow up. The only pain I have is slight groin pain.

[Pureunicorn in reply to Chicken2012]

Hi, thanku for ur reply, I'm glad it seems to have worse for u, fingers crossed it helps me, if only till I can see my endo specialist and sort out when I can have my op 😊 I hope when u go for ur scan it's done the job for u, I just want the pian and now on/off bleeding to stop, I'm on so many tablets to try and help with the pain, thanku again xx