Zoladex long term

[mablesky]

Hello everyone

I had a gaeni appointment today (i have diagnosed endometriosis)i have previosly been on cerazette but made the bleeding and pain worse so Dr suggested having 6 months of zoladex.Ive had zoadex before and found it good vitually no painand no more bleeding!!i will be put on tibalone add back therapy as well he said to review in 6 months then possibly stay on it for alot longer.My qustion is has anyone had zoladex for a long length of time any ill effects?or was it is it ok?I had heard you couldnt be on it for more than 6 months at a time obviosly things have changed.any thoughts on this would be much appreciated.Bxx

[sanchia46]

You can take it for about a year or so

[Chrissie66]

Hi mablesky

I have heard of women who have been on Zoladex continuously for 2 years or more.

I think it depends on your consultant and your own personal circumstances. There are risks involved, such as bone thinning, but if they are monitoring you and are happy with the way things are going in your case, then there shouldn't be a problem. If I didn't have the headaches and mood swings and weight gain, I'd happily stay on Zoladex for life to be rid of this pain.

He's going to review you in six months so it sounds as if they're going to keep an eye on you. If you tolerate it well then there's no reason why you shouldn't stay on it long term

Good luck!

C x

[mablesky in reply to Chrissie66]

thanks

really hope it works it worked well last time so fingers crossed!!!!!

[Becsidom]

Hi

I was put on Zoladex long term. I was told I could stay on it indefinately so long as I had bone scans every 3 or 4 years to check for bone thinning and so long as I took the Tibolone with it.

I have had, altogether about 3 years use of Zoladex - 2x 6 month courses and then I was on it for 2 years.

I got my last injection just over 15 months ago. The reason for stopping is, although it is definately helping the pain, I was still having a lot of pain and I would find that the good effects would last about half the time. So I was on the 12 weekly injections and I would get 6 pretty good weeks and then 6 weeks where the pain would get worse and worse to the point of needing morphine, and then I would get the next injection, feel better for 6 weeks and so the cycle continued. I did having periods for the first 18 months as well, it was only the last 6 months that my periods stopped. I had a lot of bowel problems and after a colonoscopy they found the endo in my bowel (or so they think). I got referred to an endo specialist who decided I needed my next laperoscopy and he asked me to stop taking it, as it can mask the endo and make it more difficult to stop.

Anyway, as much as my endo continued to grow, which I knew since I was getting periods, I did get 50% relief of my symptoms so to me it was worth taking. I didn't get any particularly bad side effects. I had some headaches now and again but taking the Tibolone helped with a lot of that.

I would say that if it helps you and your consultant is happy then go for it. xx

[samaris83]

Hi, I am new to this forum but was diagnosed with endo ten years ago, after a laparoscopy to remove a cyst. I was on Lupron Depot for 6 months a year after my surgery and had no pain or symptoms at all until last November, unbelievable, nearly 10 years with no pain! Even more remarcable, I've since had a second laparoscopy 6 weeks ago where they found endometriosis on my bladder but that was it, it wasn't much. I am going on Zoladex as well with add back therapy because in my previous treatment I lost a lot of calcium (lost 10 pounds in the last month, so yes happy weight loss just the sort you don't want to lose!).

For all you ladies, I am very interested in endo and since studying biomedical science have become very aware of so many options through research etc, I don't know if you know this but there is an alternative to long term Zoladex *it's not recommended to use this for more than six months, even with add back therapy. The alternative, really convenient, hot-flush-mood-swing free option that does not require add back therapy is called VISANNE, and it consists of 2ml Progestins that you take daily - developed by Bayer for the specific use on endometriosis. This not only is meant to relieve your pain, moods, bleeding, but also decreases the estrogen in the body without completely leading to menopause, the progestins provide the extra hormones as well as decreasing the oestradiol. It is classed and intended for the long-term management of endometriosis, while drugs like Zoladex are treatments for many various hormonal irregularities, or Lupron for instance, is designed to treat prostate cancer! I had a chat with my gynae today and after my six months regime of zoladex (just to prevent anything from growing right away) I will go on Visanne. IMportant, ladies :this is not a birth control pill. It is specific to treat our endo, this means that it does not accumulate, the half-life is of only 10 hours so this means that you can easily get pregnant once you come off the treatment, without exposing your body to so many changes which, let's face it, we will have to undergo by nature. I will paste the link here so you can all read, it sounds really promising and finally nice to hear that there is an Endo targeted treatment without all the secondary effects. The bone mass density lost by women taking this treatment was not at all different to any ordinary bone loss on women who don't suffer from endometriosis, so definitely a bonus!

visanne.com/en/auth/prescri...

Good luck ladies! And make sure you read about your alternatives before you see your doctors, it's true that they are trained to treat us but it's only fair we have a say and knowledge on what we are agreeing to do to feel better.

Sam x