GnRH: Sorry its me again, had my follow on... - Endometriosis UK

Endometriosis UK

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GnRH

Rockangel_2194
Rockangel_2194

Sorry its me again, had my follow on appointment from my lap, my gynae told me i have stage IV because of my cyst but they dont want to remove it yet as im only 27 and even though i have a daughter id like another child. Anyway my gynae has said the next course of action is to have the injection to make my body think its in a menopause state. But i was given no leaflet or info on this just how often she wants me to have it. And i didnt think of anyqhestions until i left as i was nervous in tbe appointment. How effective is this treatment? Does it get rid of endo or just postpone the growth? How have other people reacted on it. Im an anxious person and i can suffer terribly with it and dont want to do anything thatl make it worse

Thanks in advance

7 Replies
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Hi

I'm so sorry you were given such little information. I had the same experience a few weeks ago. I agreed to it but like you, afterwards I had so many questions. They didn't even tell me the name of the hormone treatment but as I was to get the injection at my GP practice, I was able to find out and it was zoladex.

What I found out was that this will put you in a temporary menopause. It essentially tricks the brain and stops the pituitary gland from signaling to the ovaries. Apparently once you come off, your normal functioning will return, but YOUR normal, not 'normal' normal.

From what I've read, at best this will create a temporary reduction in symptoms. I'm not sure what it would do with the cyst, whether it would come back but it may help to resolve that. For the endo though, it doesn't remove it, and if nothing changes in your hormones after the injection, then it will likely just return. I think with me, they hoped this would shrink my Fibroid and endo and then once I'd done the 6 months, they'd put me on another type of hormone treatment. If that didn't work, I was looking at hysterectomy.

Many women struggle with the side effects. I was offered a low dose hrt to help with that.

In the end, I've decided not to try it just now and instead to try a more natural approach at balancing my hormones (bio identical progesterone cream, diet, emotional work and lifestyle changes). If you are interested, check a few of my recent posts and you can see what I mean. It's very interesting and a lot of women claim to have healed their endo this way.

Just give yourself some time to understand the treatment and what it does before you decide. You've no rush to decide immediately. You can put it off a few weeks or a few months and that treatment will still be available.

Xx

Thank you for your response. Ive read a couple of your posts i cant begin to imagine how you must be feeling. Doesnt make it any easier being able to put a name on our ailments. But keep fighting and doing what works for pain management. I hope they find a way to help that doesnt involve a hysterectomy.

Theyve prescribed me a small doseage of ad back hrt too. But i suffer with anxiety anyway and dont like the udea of anythibg making it worse.

In regard to the cyst it just delays the growth of it as it fills up every cycle

Keep fighting this horrid disease, we are not alone xx

Does gnrh stop your period straight away? Ive had the injection yesterday and it seems my period stopped, although i was in the spotting phase and the pain as though i was on but just small amounts when wiping

First of all, don't apologise, we're all here to help each other and ask questions :)

Doctors can be unwilling to carry out removal of endo as it's an expensive operation (resources etc), they always seem to put age into it, when we've had so many other operations by the age we are now.

Hormones do not get rid of endo, they can help with symptoms as they put endo into a dormant state so it doesn't do much, however when you come off them your endo will be just as bad as before if not a little worse because it still grows a little. The hormones themselves have side effects, so it's good to know the name of it so we can give you our experience of being on it. I didn't realise until I read recently that it can take a few months to a year after stopping hormones to actually have proper cycles with egg release so that could impact you and your plans.

Did you discuss with your doctor about you wanting another child? Because usually they won't suggest hormones if that's the case, often they'll say leave the endo if it's not too bad or they'll do a lap to remove as much as possible.

I'd been on hormones for about 10 years - when I didn't know what I had, it stopped having an effect - symptoms came through. I went to GP and had to push for years so they'd pay attention. I was referred to a specialist whom really listened and was happy to do the diagnostic lap and removal of anything they found (he thought it may be endo) - they found lots of endo and excised it. I'm now recovering and will not be using hormones as I want to know what my baseline symptoms are, currently it's now just around my periods, which I can cope with relaxation, yoga and exercise. We're not planning or preventing, just seeing where nature takes us - even so my specialist was fine with just going ahead and removing the endo as he with all his patients says that removing what's causing the problem rather than masking it makes for a better life both physically and mentally. Anyway just my bit of experience

Hope this helps xx

farahziya
farahziya in reply to farahziya

ahh only realised your post was days ago, whoops!

Thank you for your reply, sorry my reply is so late, been a whirl wind couple of weeks.

My endo was removed but is growing back. Im two weeks in since having my first injection. And ive bled ever since. I dont know whether to phone the gynaecology department to find out if this is normal.

You could call, but best check / post on here to see what other women did / had when on it. Also check the list of side effects - sometimes these things take a while to settle down and get used to.

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