Decapeptyl GnRH question..: Hello, I had my... - Endometriosis UK

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Decapeptyl GnRH question..

minnie71 profile image
6 Replies

Hello, I had my 1st (and only Decapeptyl injection last week (opting for a hysterectomy around xmas) and am wondering about a few things.. Before getting this I was struggling everyday with hot flushes, sweating and really bad night sweats, so deciding about having the injection was a huge step for me. I was really worried that things would get worse (if that was at all possible!), and wasn't sure exactly what to expect. I had my 1st injection 8 days ago and since then things seem to have improved :-) Am I being naive about it all? Has it kicked in as yet? Is it too early to tell? So far I seem to still be having some sweating and hot flushes but not as severe as previously and haven't had a night sweat since I got the injection. Maybe it's just that I got my injection on my 1 good week per month?? I am living in hope here, but haven't taken it for granted. R things likely to go downhill? Has anyone else noticed an improvement in these symptoms after getting the injection? I'm not on HRT as I have a clotting problem so this will never b an option for me. Any help would b nice :-) Thank u ladies xx

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minnie71
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Chrissie66 profile image
Chrissie66

Hi Minnie :)

Oh, I hate to be the one to break this to you...it's too early to tell.

That being said, these injections don't always mean 6 months of hell (although that is the case for many ladies, I'm not trying to belittle it in any way). When I had my first couple of courses I felt better than I had felt for years. In later years it's not been a picnic by any means, but at the same time it's not been horrendous. Far preferable to the endo symptoms, anyway.

The problem is that it affects everybody differently, so it's impossible to tell you exactly what's going to happen for you. You'd be extremely lucky to get away with absolutely no side effects but seeing as you've already been suffering with the hot flushes which many ladies report as the worst thing about the injections you might not notice this, or it may even improve because your hormones are being strictly regulated.

I hope you're one of the lucky ones. It would be interesting to hear how you're going with it in a month's time; it would be nice to hear a positive story about it :)

Good luck

C xxx

angelswings84 profile image
angelswings84

Hi , I had decapetyl and the first 2 months were hell.. Then the 3 month was like the clouds opened and there was sunshine.- no periods=no pain, more energy.. I just felt so good. I hope it helps u in the same way. Claire

minnie71 profile image
minnie71

Oooh mixed emotions about it all really (no.. that's not the hormones talking already!) Lol!!! Thank u so much ladies for replying to me, its really appreciated. I think I will keep an eye on my symptoms and make a post in a months time on here so that others can c what happened too. At least we will b able to share my info which could help others :-) So thankful I keep a diary of it all now as its worth its weight in gold. At least this will likely b the only one I get anyway as the hysterectomy is definatly on the cards, and hopefully will b done as soon as this wears off :-) Yay!! Keep u posted and thanks again xx

Daisy4567 profile image
Daisy4567

How are you getting on?

minnie71 profile image
minnie71

Hi Daisy4567,

Well its not too bad actually :-D I had the headache from hell for the whole initial 3 weeks at the very start and was starting to panic at the thought of it continuing for 3 months. Thought it was a cracker of a headache it soon dissappeared and hasn't been seen since :-)

Night sweats returned and seem slightly worse than before. Also my general body temperature has increased (tho I'm gratefull for that as I'm not shivering all the time anymore). The hot flushes can b mean but manageable, I just wear lots of layers so they can b taken off when needed and try stick to breathable fabrics (at least u dry off quicker that way too!).

Bled like mad for the 1st few weeks (slightly worse than before the injection) and was a mixture of pink, brown and full on bleeding with clots (sorry waayyyy too much info! :-/ ), but since then I haven't bled at all. I'm soo glad about that bit.

Have now been booked in for my hysterectomy on 8th Jan and am going private thru my hubbys work insurance. Haven't seen the NHS dr yet but will c him on 11th Dec and let him know then. Will b staying with him in the long run tho as they will b monitoring my bone density as I cannot take HRT at all. Am currently waiting on a consult with my surgeon (same one as last year) who will tell me exactly what type of surgery I'll b getting.. whether thats keyhole or open surgery.

Pain has been a big issue for me over the past month and had to spend a whole week in bed. Also cannot stop peeing and am having to get up every night 2 or 3 times... driving me bonkers!! My stomache is enormous and I really do look 6 months pregnant these days. Had to invest in maternity jeggings last week as had nothing comfortable the fitted to wear. Also my bowels have been a nightmare too, ranging from constipation to diarehea and cannot leave the house til I have properly been in the morning due to having to go at short notice.

Had an ultrasound 2 weeks ago which showed up nothing but the radiographer thought it could b that I have adhesions and some parts r stuck together.... Have decided to tell the surgeon just to do whatever is needed when he does the op... really dont want to b back again for surgery so soon after the last one. Fingers crossed eh?!

Generally the injection was ok tho... If I wasn't having the op then I would prob have had another one :-)

I think thats everything, tho I'l prob remember loads I forgot to tell u wen I send this email. Doh!!

How r u lately??

Take care, xx

Daisy4567 profile image
Daisy4567 in reply to minnie71

Hi Minnie71,

Thank you for coming back to me and hope you have had a pain free Christmas.

My 1st injection of Decapeptyl immediately after surgery brought with it terrible pain on the first period. It was soooo bad and I'm no wuss having suffered debilitating pain each month for years. It was so bad I wasn't going to have the second injection but after having a loooooong conversation with my Nurse who administers it, I decided to go for it. I didn't want to have gone through what I just had for nothing. I'm so glad I did! Although my bum was sore for a week afterward, lol. Seriously though, no more periods, no more pain, I am loving it! Although I am suffering hot flushes quite a bit at times.

Sometimes I can still feel my endo with a bowel movement, or I'll have that heavy, dragging sensation in my uterine etc area but I can so cope with that. I go back for my third injection today.

I'm glad I stuck with it.

How are you feeling? Did you end up having another injection? Seems odd to me to give you one and one only when it's the first one that causes the flare? Oh hang on, just realised, you had the three month injection? I'm on the monthly one

Xxx

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