GNRH injection : Hi, has anybody tried... - Endometriosis UK

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GNRH injection

KATR profile image
KATR
5 Replies

Hi, has anybody tried zoladex injections ? I'm due to start them this week and I'm a bit concerned about the potential side effects !

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KATR
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Impatient profile image
Impatient

healthunlocked.com/endometr....

have a read through one of my previous posts - with apologies for the typing errors - it was late and after a hectic day.

Use the search box on the green bar at the top of the page and look up

GnRH, Zoladex, Lupron, Prostap, Decapeptyl etc.

There are thousands of previous discussions on these drugs - all of which act the same way.

Pg55 profile image
Pg55 in reply toImpatient

I was dead against using zoladex , have been since I was diagnosed . I work on Pharmacy and am only too aware of the side effects . After an emergency admission for a ruptured cyst I was left with little choice , and although the menopausal results are awful I can honesty say I'm not sure I could cope without the zoladex injection . My pain is managable now and I need only occasional pain relief . I think you need to discuss at length with your gp or gynae consultant , but for me it's been a massive help . I'm 41 and had a hysterectomy last year , retaining an ovary to avoid needing hrt . This ovary has now caused a rapid return of the endo which ruled my life for 20years . Don't be out off by the leaflet or the listed side effects , we all respond differently to medication . What works for one may not work for another but you won't know unless you try . Hope this helps x

Hello there. I was diagnosed with endo 20 years ago. The only treatment which ever worked for me was zoladex! I tried various hormones - but zoladex & prostap were the ones which gave me back my life. I had a hysterectomy in 2009 & have recently been diagnosed with ovarian remnant syndrome. So once again I've been given 4 months worth of zoladex. My pain has improved dramatically - to the point where I have halved my pain relief.

Hot flushes & night sweats are no fun - but are manageable. Buy a decent fan for your bedside - a hand held fan for your bag & you will feel cooler. Some gynaecologists give their patients "add-back" in the form of HRT to combat side effects. If you struggle with side effects ask your gynaecologist to try HRT.

As for bone density - I advise eating calcium enriched foods. I drink milk & eat yogurt now. My bone density is poor but that's after years of zoladex & progesterone only hormones. 20 years ago gynaecologists didn't know what they know now. I'm not angry. Just resigned to the fact.

If you don't get on with zoladex try Prostap or Synarel. If all fails the alternative is taking the combined pill back to back without any breaks. It effectively does the same job - dampening down the ovaries to keep the endometriosis at bay. My consultant has put me back on the pill to help combat the ovarian remnant. It's long term treatment & kinder on my bones.

Hope this helped?

Please let me know if there's anything else I can do to help?

Good luck!

A x

antonia-boyton.net

Impatient profile image
Impatient in reply to

The above post is misleading - "If you don't get on with zoladex try Prostap or Synarel."

That is not correct.

All these drugs work to shut down the pituitary the same way - makes no difference at all to the side effects as you will experience the same, which ever drug you take. As the side effects are how your body copes without the hormones produced by the pituitary.

THE ONLY DIFFERENCE TO YOU AS THE USER - IS HOW THE DRUG GETS INTO YOUR BODY.

Zoladex is an implanted pellet in the stomach

Prostap in an injection

Synarel is a nasal spray taken daily

6 months max in a life time is the recommendation by ALL the drug manufacturers and if you volunteer to go over that and suffer as a consequence during treatment or later on in life or the pituitary doesn't wake up leaving you with long term side effects, you have no comeback whatsoever to sue the doctors or the manufacturer as you are using the drug outside of the manufacturers restrictions.

Hello Impatient. I wasn't trying to be misleading. Although all GnRH analogues work in the same way they tend to have different side effects. I was implying that if one made you feel sick - as the Zoladex did 2nd time around for me - then it's worth trying to find another - such as Prostap or the newest drug on the block.

You are right that these drugs are only licensed for 6 months maximum but there is no definite cure for endometriosis and therefore we have to try everything we can to help us.

Most gynaecologists will add HRT as add-back for long term use of Zoladex and other GnRH analogues. Studies have been done on long-term effects of Zoladex & as long as you stick to a calcium enriched diet with added vitamin D - bone density shouldn't be a problem.

I have been on GnRH analogues on and off for 20 years. Each time my periods came back; with a vengeance. No problems with pituitary gland at all.

We are all different & what works for one may not work for another. I know that women in the US are very anti certain GnRH analogues but at the moment - putting the body into a menopausal state is one of the ways in which gynaecologists can keep endometriosis at bay.

The contraceptive pill - taken back to back without any breaks is another way to dampen down the oestrogen & stop endometriosis from reforming.

But some women - like myself - get breakthrough bleeding with continuous use of the contraceptive pill; thus defeating the purpose.

I now suffer from something called ovarian remnant syndrome. It's very common in cats - but misunderstood by gynaecologists. One way to combat ORS is Zoladex. I was given a 4 month course & all symptoms miraculously disappeared. But because of osteopenia I can't stay on Zoladex long-term - plus it's an expensive drug. So I'm now on the combined pill back to back. As I no longer have a uterus - breakthrough bleeding shouldn't be an issue!

In the long run - GnRH analogues are so much better than male hormones; which used to be given to women over 20 years ago. I know they're not ideal - but they're better than nothing.

Some women with endo find that the Mirena Coil helps - others try diet. But bleeding internally every month messes your insides up to the point where you are covered with scar tissue and adhesions so dense that your pelvic organs stick together and become useless. A frozen pelvis is no fun. Bowel obstructions & bladder problems are even less fun.

Until the doctors find a cure we have to do the best with what we are offered. And if it means putting the body into a fake menopause - then so be it.

I am 45 and was diagnosed aged 24. I have no doubt in my mind that Zoladex & Prostap have made a difference. I was able to live my life on these drugs, as supposed to being doubled up in bed; house bound & bed ridden. I am sure I've had endo since my teens - that's 30 years of living with this horrible disease. The times when I've been on other hormones - or tried the Mirena - my pain was out of control & I spent many a night in the Gynae ward needing pethidine at regular intervals. The nurses in the Gynae ward got to know me so well, they'd joke that there was a bed with my name on it. 20 years ago I was deemed too young to have endo - we know better now & Gynae nurses are more up to speed with this debilitating and life altering disease.

When I was on Zoladex, I was able to enjoy my life; I was able to have a close physical relationship with my boyfriend/ husband. These hormones don't suit everyone - I do know that much; but when they do work, they work exceptionally well.

We are all different - our stories and symptoms are all different too. Please don't put words into my mouth.

With all best wishes.

A x

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