GNRH injection

[Labradoodle123]

Good morning, im looking for advice regarding the GNRH injection, I've not had a diagnosis of endometriosis as my gynaecologist has suggested trying this injection or going straight in to do a oophorectomy, he says the likelihood of endometriosis is high going by my symptoms and my overies are fused together (this shows in a scan) I initially agreed to trying the injection, im not sure now having read side effects, i personally would prefer a laparoscopy to have endometriosis removed, any advice would be greatly appreciated x

[Joonaspryte]

i am in the same boat as you, my gynocologist wanted me to have gnrh injection before doing anything else too, but im not keen.

I would rather it cut out, especially as my bowels are stuck together .

[Labradoodle123 in reply to Joonaspryte]

Thanks for replying, it's frustrating as it's like there avoiding diagnosis, and the need to remove the endometriosis possibly more than once, i wish you good health 😊

[LME5]

You're right to want a diagnostic laparoscopy. I can't believe GNHR is being pushed on women without informed consent, i.e. full explanation of the side effects. In saying that, the wait times for NHS gynaecology care / surgery are currently averaging 18 months. If you are suffering and have tried lifestyle changes that aren't helping enough and you're open to trying a different medical approach, like GNHR, then just make sure you're fully informed and prepared for the ride and aware that after it wears off, symptoms will most likely reoccur all the same AND that it's not the kind of treatment to be repeated on a continuous basis. It really is a temporary form of relief, with its own bag of side effects! When it comes to medication, it's always a case of choose your poison.

[Labradoodle123 in reply to LME5]

Thank you for replying, it really is a minefield 😒 I've read up on the side effects and it's put me off, I've asked for a diagnostic laparoscopy, hopefully my consultant will agree to it, good health to you x

[Emmy31]

I started on these pre laparoscopy. They changed my life for the better! I was in such a poor place and these massively helped me. The downside was that at laparoscopy they found no active endometriosis however, previous suspected areas which had been seen on scans had gone. All that was seen was scarring. My gynaecologist was amazing and I do now have a diagnosis alongside adenomyosis.

I am now waiting for a full hysterectomy. It was a good decision for me and my gynaecologist talked through everything with me including negatives etc.

[Labradoodle123 in reply to Emmy31]

Thank you for replying, I had to research the injection myself as my gynaecologist didn't have any leaflets at the time, all the best with your operation when the time comes x

[Emmy31 in reply to Labradoodle123]

Good luck with everything. It’s horrible trying to navigate things with little support. Xx

[TicTac77]

Hello, I tried the injections as part of my journey with endo and adeno. I get on very poorly hormone treatment so I tried the gnrh injections as a trial run prior to having a hysterectomy, excision and ovary removal.

I found the injections improved my pain but the menopause symptoms were awful. I used the time I was waiting for surgery to work out which HRT regime worked for me.

The injection didn’t help with pain associated with my endo nodules or adhesions but did help with ovulation pain and period pain as I was no longer doing those.

If you try them you will almost definitely need some form of add back hrt. There’s an endometriosis suitable hrt called tibolone. I ended up doing better on body identical hormones though. Either are fine as the doses are constant and lower than usual oestrogen levels when cycling (this is my understanding from my doc).

One other thing, if you’re going for ovary removal I would really suggest you consider a hysterectomy, adeno is harder to see on imaging but it is common to have both adenomyosis and endometriosis.

[Labradoodle123 in reply to TicTac77]

Thank you so much for replying, the hrt you mention is the one my gynaecologist has recommended, I've also had the option of full hysterectomy, I've got lots to think about, wishing you good health x

[Mami2merch]

I was put on the GNrh injections last December for 6 months and so far it’s been the only thing that’s agreed with me, (I’ve tried all medications, mini pill , coil) I was pain free but did have downside to it , severe acne , low mood ect but this was only for the first 2/3 months . It worked for me and then they said I couldn’t have it anymore .

Good luck x

[Labradoodle123 in reply to Mami2merch]

Thank you so much for replying, im so sorry you can no longer have something that agreed with you, wishing you good health x

[Beaugirl89]

open.spotify.com/episode/3a...

[BusyLizzieP]

Hey, personally I turned down GNRH before a laparoscopy, but I basically had to fight with my consultant not to have it. He just kept telling me it’s was a treatment for endo and I should have (without telling me any of the side effects)

I also had my ovaries fused together and they were able to separate them during laparoscopy without removing them. So it’s definitely something they can do (depending on individual circumstances). Might be worth getting a second opinion on your options if he’s not offering you a laparoscopy.

[Labradoodle123 in reply to BusyLizzieP]

Thank you for sharing your experience, good health to you x

[Chartolfrey]

Im on the monthly injections and the 1st 2-3 months was still awful but since then no periods. Mild pain.The menopause side can be hard but hrt helps with that.

Im currently on a 18 month wait for a full hysterectomy and personally i look forward to my jab each month as its improved my quality of life

[Labradoodle123 in reply to Chartolfrey]

Thank you for sharing x

[Merbunny]

Hi, I’ve been using this injection alongside tibolone for some time now and it has transformed my mental health due to PMDD. Only downside for me is that my cycle was naturally quite short so my hormones tend to be trying to kick back in before the next jab each month. For those 5 days I experience migraines and some mild emotional ups and downs. I am desperate for the injection by the time it comes around. For me though this is preferable to the two weeks of intense lows without the injection. Like all things, it’s really a personal choice, we’re all so different. I didn’t feel pushed into them, it seemed rather like a practical solution to the waiting time for the surgery I need.

[Southwestsmiler in reply to Merbunny]

Hello. I see your comment regarding PMDD. I have a previous diagnosis of bipolar but in recent years I've been highlighting PMDD as the real issue. In my area no one has listened to me or given me that diagnosis. I have spoken to a psychiatrist and general gynaecologist who somewhat get it but offer no joined up approach and where I have endo also. It's been a complex journey where the treatment for endo (progesterone) has made my mental health worse. Who confirmed your PMDD and how did this come about if it's ok to ask you? Finally my endo consultant is listening to me, where I needed a solution to the endo symptoms getting worse again and failed use of progesterone on endo and mental health but also testing down shutting my ovaries currently which may add to the whole picture. Whilst its early days on the injection pre hysterectomy, I certainly feel a little lighter on my feet regarding my mental health so I think it's only confirming what I think where I'm confident I never had bipolar, and should not have been treated for bipolar and I have PMDD. Sadly had that been acknowledged years ago then perhaps my endometriosis journey would have been different also. Good to hear things are working for you as it gives me hope!

[Labradoodle123 in reply to Merbunny]

Thank you for sharing x

[cristinaz]

I had this in between my first and second laparascopy and to be honest with you I would have said no to it if anyone had told me about the side effects. No one at the time explained to me the side effects, they made it sound like it was needed and I didn't have a choice. The side effects which btw did not go away after the 3 months the injection lasted for were horrible. I was left with lack of libido, dryness from the artificial menopause, horrible headaches. I was 30 at the time and I found myself being a completely different person.

[Labradoodle123 in reply to cristinaz]

Thank you so much for sharing x

[Southwestsmiler]

Personally I would say that the injection should only be used as a temporary interim measure pending any laparoscopy and removal of Endo. Some people go on the injection after surgery also to limit and delay the return of symptoms so other people may have that persepctive. I'm on the injection, whilst waiting for a hysterectomy where they will excise any endo at the same time where I've had endo confirmed and surgery 6 years ago. The injection isn't a long term cure for what you are describing but might help with some symptoms whilst you are waiting for an operation. Can you ask to go on any relevant waiting list for surgery and then can consider taking this in the meantime? My waiting list is one year for hysterectomy and excision if I'm lucky. I'm 7 weeks into Decapeptyl (12 week injections). Whilst I'm getting some hot flushes, and strange sleep, I personally am finding this a breeze in comparison to all the terrible blood loss and clots I was experiencing which was also causing very low iron and associated symptoms and very unmanageable. For me, part of having this injection is not only about stopping my constant bleeding but also testing shutting down my ovaries and how I respond to this. This will dictate if they take my ovaries out when I have the hysterectomy. I understand they like to keep ovaries in place if possible where I'm 40, but I'm arguing I want them removed also due to my progesterone sensitivity and impact on mental health and failed trials of multiple progestin hrt in the last 10 years. This injection will support or deny them in removing my ovaries aswell but do far so good in comparison to everything else before. I also have a prescription for Tibolone to take alongside the injection which I will start very soon. I have to take this to support my bones if staying on the injection for a year. I chose not to start my Tibolone hrt at the same time as my injection as I wanted to see how my body and mind would respond to the injection alone and menopausal state. I've pumped my body full of mis matched hormones for 10 years so in recent times have started to peel back some layers to see how I respond to stuff individually. I will start taking my Tibolone soon though as I have to whilst being on Decapeptyl for my bones mainly but this may also help with the hot flushes and more menopause type symptoms. I'm more concerned that when I have to take the Tibolone add back this will unbalance me again and I will bleed again which I really don't want. Whilst my GP did not have a clue, I have read guidance online which tells you when you should have your injection during your cycle. I had my first injection on day 3 of my natural period where I track my cycle and symptoms on the clue app. Personally I felt this was the right timing. I did bleed heavily for another week after my natural period and having my first injection but then it stopped and hasn't started. Basically I could see where my natural hormones should be and how this injection was interjecting using the app and also when I didn't come on my natural period on the next cycle I knew the injection had worked. I have read and I'm an expecting that the injection my wear off towards the end of the 12 weeks so will wait and see. I was scared about starting but so far Decapeptyl has been good for me. I'm not so confident in the Tibolone add back but I'm yet to start it but will in the next week. Second injection due on 02/01. Hoping I can get repeated injections until my surgery which maybe in August if I'm lucky. I'm not sure if that helps. Given the delays in waiting times and treatment I'd be inclined to push yo get yourself on a waiting list and then understand more about the injection being used as an interim measure and why that might be helpful for you.

[Labradoodle123 in reply to Southwestsmiler]

Thank you so much for sharing your experience, I've a lot to think about, wishing you good health x

[JJ93]

Hi I had 3 laps within 18 months, the endo just grew back very quickly each time! I've been on prostap injection or synarel nasal spray (prefer spray but not always available) along with hrt for 7 years and feel fantastic with no side effects. No periods or pain, I've got my life back!! I have to get a bone scan every 2 years. I have made big lifestyle changes with diet and supplements which has also helped. I'm 47 now and they plan to keep me on this medication until 51 and see if menopause has happened 🤞 Good luck

[Labradoodle123 in reply to JJ93]

Thank you for sharing x