After zoladex is stopped......

[Noggsy]

Hi all,

I only have four of my six Zoladex injections left - and apart from being tired and a bit narky (and a bit of pain but nothing like before), I am feeling great. But, the GP will only let me be on this for 6 months, although a consultant I saw for a procedure theother week said 2 years.

I was banking on seeing my consultant at the beginning of May - but it has been cancelled - typical - and I was hoping to ask to keep on this. Obviously I will be coming off this now.

Can anyone tell me their experiences of coming off Zoladex please?

Many thanks

Shellxx

[Tinkerbelle3Laughter]

Shell this is crazy if your consultant has said you can stay on it he outranks the GP!!

If you cannot get an appointment with him before you are due to stop them then I would write, email and telephone (yes do all three so they actually LISTEN) your consultant at hospital and tell him your GP will only agree to six months unless he has it in writing from your consultant that you can have it for two years. In the letter/telephone call/ email, tell your consultant you know of other people who have been on Zoladex for over two years who are fine and also explain that it is working brilliantly for you and you want to stay on it.

Dont just allow them to take you off it and then possibly put you back on - I talk from experience. Coming off the stuff is horrible - you wanna stay on it as long as you can if it is helping.

When I came off the Zoladex I had to stop the HRT straight away and then I had all the symptoms as though I was on Zoladex but with no HRT to help for at least 6 months. I would sweat uncontrolably on my face, have terrible headaches (still getting these nine months later), feeling exhausted, I mean really really really tired, and generally not feeling well. I have been off it for nine months now and although I kept having periods while I was on Zoladex, now it has stopped I have not had a period in all this time!

[Noggsy]

Oh yeah - thanks Tinks. I have sent an e-mail to my consultants secretary to ask to be on it until at least I see my consultant. Hopefully should get the go-ahead 'till then at least.

I had done a bit of research on this and it didn't look very nice coming off it. Also, women were reporting that within a few months they were back to square one - which none of us want!

Sorry to hear you are having such a hard time still from the meds. Its bad enough just dealing with the illness - never mind after effects of treatment months and months ago.

Shell xx

[Tinkerbelle3Laughter]

Yeah - for me, Zoladex was a godsend - however it only helped ease my pain for half of the time so I would have 12 weekly injections - the first 6 weeks I felt brilliant, the last 6 weeks the pain started to return.

This meant that after my last injection 12 months ago I had 6 weeks good and then since then have gotten progressively worse. I felt really really bad for the first 2 months after I came off with terrible pains back etc, then it settled to a point where the pain was bad but managable, and the over the last 4 weeks I have been getting the worst I think I have ever been - to the point where at times I cannot stand up straight, walk, get into the bath, get into the shower, brush my own hair or even do the very slight twist you have to do to put your arms into your coat.

My endo is severe and it is all over my bowel as well, so I dont mean to scare you and you may find things are a lot better than I am describing - I am by no means the "norm" when it comes to endo, things always seem to be on the more severe end of the scale, but from personal experience, I would do all you can to stay on it as long as possible.

Also the LAST thing you want is to be on it, come off it and then get put on again because it just completely and totally wrecks your hormones. xx

[Noggsy]

Thank Tinks - yeah I fully understand about you have severe endo, etc and how we are all different. For me I just want the pain to stop - don't care what or how big it is me darlin.

Anyway, good news - I spoke to consultants sec this morning (after receiving a phone from hospital for a pre-op assessment for a lap and dye test - more invasive version of the HSG I went ofr a few weeks back and wasn't told about!!). Anyway, they fully respect the path I am taking (deciding not to have kids), and will book me an appointment before my last Zoladex injection, and agreed it isn't nice when you come off it - only to go back on it again. So what I hope is - a bit longer on Zoladex because it is so great for me, then maybe a hyster with oopher so hopefully endo will be at minimum in me. Thisis what I will put to him anyway.

At my last lap I had mild endo - but lots of it (everywhere) - but I suffer with pain awfully. So I really hope they will go for this as I think this is the best option for me. However, after the lap just over a year ago it worsened by ten fold so I this could have changed. But hopefully the zoladex will reduce this.

Tonight is the first night of when my period is due and I feel no pain. I can't tell you how great I feel (although hormones do play havoc) but not anything like what Isuffered before. I really feel as though my ife is back, and that all these worries have taken off my shoulders. I am for the first time happy. And I can eat wheat and gluten again - I haven't been able to eat this for about 6 years and it is so great. I don't want to go back, I want this to be permanent.

Sorry if I have gone on - I've had a glass of wine because I am so blimmin happy.

Shell xxx

[Tinkerbelle3Laughter]

Great news babe

Just stick to your ground and dont let them take you off it and then put you back on it.