GnRH analogues - please help, I'm only 24! - Endometriosis UK

Endometriosis UK

70,528 members52,075 posts

GnRH analogues - please help, I'm only 24!

jdys profile image
jdys
9 Replies

The combined pill and progesterone only pill haven't seemed to work and the consultant has recommended GnRH analogue injections - basically a 3 month menopause. I am very worried and scared of the physical effects this will have on my body, especially at such a young age. Please can anyone offer any help, advice or experience in this?

Written by
jdys profile image
jdys
To view profiles and participate in discussions please or .
Read more about...
9 Replies
cuddlybear profile image
cuddlybear

Hiya.....,everyone of us react differently to treatments and have been suffering with endo for 22yrs now and out of all my treatments the GnRH injection was the worst. I was put on a six month course and had to have injection every 28days. My pain got worse,my endo has gotten extremely worse because of the hormones in it,insomnia was defo one of the worst,depression,headaches,pain got worse,back ache....pet I could go on and on there's so many side effects, I have spoken to a lot of ladies on here in the exact same boat as me and reacted badly with al of them. Find out which one your getting and look it up on google,the side effects,what to expect,etc and have a chat with your doctor and your consultant before going ahead,its a major choice to make....I had my first and things got worse and just thought when I get the second one things will start to get better but instead got worse and decided I wasn't getting anymore...I mean why should I pump something into me that's making me feel a million times worse,it wasnt working for me,and the day after I was due my third one(I didn't get it)and was with the consultant and had written down my list of symptoms and told him the effect it was having on me,both physically and mentally,and he agreed with me and going ahead with surgery in the next six weeks as nothing else had worked......you could react completely the opposite but do your research before making the decision,your only 24,my hearts going out to you,dats a lot to deal with especially being so young....best of luck xx

Kelly_harkness profile image
Kelly_harkness

Hi I was put on decapeptyl injections for 2 years which is a GnRH analogue it helped with the pain and my periods stopped all together but did take 3 months to do so.. It's one of the better treatments I've had in terms of calming down the pain however it has lowered my bone density so they took me off it. I would recommend giving it a try as cuddlybear said everyone reacts different so it's hard to judge how you will react xx

LeyaC profile image
LeyaC

I'm 18 and having prostap in injections monthly for 3 months, I'm having my third on Thursday. I have to say it does work differently for different people but I've had the bad and not the good experience. If I'm honest I don't think mt body is actually taking it well because I've not had any side effects like menopausal symptoms, all I've had is periods still and (warning of TMI) excessive discharge. I am in more pain than I was in before and I'm getting bad migraines and I'm not sleeping o well either so for me I'm not getting bad symptoms but the things I've had already have got worse. I am diagnosed with Endo but having another lap in July to see how bad its got since my last one. I've heard that you only get the menopausal symptoms when its working so the fact that I'm not makes me think that its not working properly or at all. I hope this was of some help to you.

Leya xxx

cuddlybear profile image
cuddlybear in reply to LeyaC

Hi Leya...me again....I was on the prostap and had the exact same reaction as you did....I think the worst part for me was not being able to sleep and the pain.....OMG......not everyone gets the menopausal symptoms but I can assure you it's definitely working......was with my consultant last week and was due my third injection and didn't get it as it was too much to handle all at once, the pain is horrific when your having a flare up and its a struggle to get through the day as it is without pumping your body with crap that isn't working for you, my consultant told me it that it only agree's with some women and it was 50/50 whether it would work and said that the fact the pain worsened was a sign that the endo was definitely back and stopped injections straight away and now pulling my surgery 4months earlier than planned thank god.......Best Of Luck with your surgery and its only a few weeks away and you will finally get a bit of relief...will be thinking of you....

Alison Xxxx

endopains profile image
endopains

Go for it! It's worth a try. I took it at 22. It wasn't easy but I was working with menopausal women so we had the air con on and I had a sympathetic ear :) I took menopace vitamin tablets to combat most symptoms. Finding something that works for you is the most important thing and this could help. Don't be discouraged that other people don't find it helps, everyone is different. Sadly it didn't work for me but it didn't make it worse. Worse case scenario you'll be on it for a month and you can stop but do try to stick with it. Good luck x

tigergirl profile image
tigergirl

Definitely give it a try, I'm 19 and have just had my 7th injection. From the research I've done I don't think age has much to do with how the injections affect you, it differs from person to person. I'm not a medical expert but I would imagine having it for a short 3 month course in early adult life would be preferable to later on as your body should be better able to cope with/repair any changes caused by the injections so as to lessen any long term side effects. This drug can work brilliantly for some people (unfortunately I dont appear to be one of them) and its definitely worth trying it as it can be a life changer.

Taking such a strong treatment can be daunting and I'm not going to lie i've had terrible side effects but it's so worth giving it a go for just 3 months if there's a chance it can really help with the pain. As the above post says, if you do go on it, the first month will make you feel a little strange but stick with the course as your body will need some time to adjust. Your doctor will be able to give your advice on how to cope with any effects (make sure they do this!) and luckily light clothing is more acceptable in these months so hot flushes are a little less conspicuous - i was getting some pretty strange looks walking around the city centre in January in a vest and shorts! There are lots of supplements to help with menopausal symptoms and layered clothing in preparation really helps. Good luck and I hope you feel better soon x

Catness profile image
Catness

Hello :)

I'm the same age as you with stage 4 endo, interstitial cystitis and suspected adenomyosis (having another lap next week to diagnose that). They offered me the injections and I have refused point blank even though I am currently unable to really function. The reason is that these are super strong drugs that work by shutting the pituitary gland down in your brain and a lot of people find that things like their short term memory are really badly affected by it. Then there is the bone density problem that will never get better and then after your course of injections it will go back to how it has been all along.

Sorry to sound so negative, I know it DOES definitely work for some people but I personally didn't want to risk it. I also wanted to try everything else before I had to even consider it so I'm trying the mirena coil which also has it's list of side affects but it's supposed to be particularly good for adenomyosis. Whatever you decide make sure it's the right decision for you and not your Dr.

Best of luck xx

Brownlow profile image
Brownlow

Well said by Catness.

In my view, not worth the gamble of irreversible long term damage. Western medicine has to come up with something better for us than the revolting drug which wasn't even designed for endo. We just represent market expansion. It isn't a 'cure' and endo will return once the injections are stopped.

sandy112 profile image
sandy112

hi, I am 28 and have stage 4 endo and the Drs have recommend to get the GnRH analogue injection I am in two minds about this as I have done some research I know people react differently but most people have reacted bad and did not work for me, I am currently on the pill as it does help as I take them back to back for 3 months at a time. I want a family so does the injection affect that in anyway help please?

You may also like...

Please help I'm only 24 years old

Treatment options? GnRH Analogues?

with my consultant yesterday. I was advised that my best form of treatment is the GnRH Analogues....

Please Help Me, I'm desperate.

been on lupron injections at the start of the year but it have me terrible side effects. Then I...

I'm so tired of it all :-( please help x

everything is stacked against me please could I have some advice I'm so scared of my mental state...

Please will someone help

it with the pill, there's been no talk of a laparoscopy being down to confirm it. The pill didn't...