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fibroids - been prescribed Zoladex

(9 Posts)
wicketkeeper Wed 31-Aug-11 09:13:42

aka Goserelin - GnRh analogue

Anyone out there with any experience?

The aim is to reduce my humongous fibroid to manageable proportions. However, reading the list of side-effects (yes, I know, I know) I'm beginning to wonder if the cure is worse than the complaint.

It brings on a temporary menopause - well, at very nearly 51 everyone (including my very understanding husband) is telling me that I'm nearly there anyway, so it's not that big a deal. BUT, I've so far had no symptoms of the 'normal' menopause, and my periods are still regular, so for me it IS a big deal, to deliberately, voluntarily, bring it on. I feel like I'm going to become old overnight.

It causes a reduction in bone density. Hey, that's a big deal too!!

It can cause weight gain - the only reason I'm doing it is cos I've got a huge belly that makes me look 5 months pregnant (I'm 5'8" and 9stone, so not fat). What's the point of reducing the belly if I'm going to get fat anyway?

It causes a reduction in sex drive - again, hell, that's a big deal.

So, should I go for it, and reduce the size of the fibroid, and hope that I don't suffer too many side effects, or put up with the fibroid (which will reduce anyway once I really go through the menopause). I also get heavy bleeding which will be reduced by the Zoladex, but I can control that with Transexemic Acid anyway so that's not the main issue.

Any helpful thoughts greatly appreciated. Both my gynae and my DH are men, and I would really like a woman's view on this.

TIA

SleepyCat1 Thu 01-Sep-11 17:28:18

Hi,

I have had two 6 month courses of zoladex to treat endometriosis. I might of been lucky but actually didn't feel too bad on it and also saved monthly few days of agony. I was in my mid thirties though. Ask if you can have the three month dose after you have tried it for one month as the worst bit is the actual injection. If you look at the national endometriosis society boards you will find lots of ladies with more recent courses of zoladex.

Good luck

Planetofthegrapes Fri 02-Sep-11 03:19:50

Hi Wicketkeeper,

I had three 1-monthly zoladex injections to shrink a fibroid before surgical removal. It was injected using a large needle. My real menopause a few years later, was tame in comparison.

The "menopause effects" were very rapid - extreme hot flushes and vaginal dryness etc. I was advised to take HRT at the same time, but didn't (doctor thought I was a bit mad). I can't remember gaining much weight.

I'm under the impression that its only a temporary treatment.

Have you been given the choice between zoladex or a hysterectomy?

wicketkeeper Sun 04-Sep-11 20:18:22

Thanks so much for replying - I've been away, so sorry I haven't replied sooner.

Planet I told the gynae that I absolutely didn't want a hysterectomy (I felt it was a bit of a sledgehammer to crack a nut, especially as I'm already nearly 51), and he's accepted that, although I think he would prefer to just wop it out and have done.

Interesting that the symptoms came on quickly for you - forewarned is forearmed. I haven't been offered HRT, not sure if I would want it tbh.

The plan is to have 6 injections over 6 months, and see how much it reduces, and then decide where we go next.

Thanks again.

nowhereelsetogo Sun 08-Apr-18 10:30:33

Zoladex Warning

Hi everyone,
I believe that it is my duty to warn everyone out there about the long term side effects of having Zoladex injections if you have been offered this particular drug.
I was given injections of Zoladex directly into my stomach from 0ctober 1996 for two and a half years for breast cancer. I have had terrible stomach issues which began with me often ending up crawled in a ball on the floor with excrutiating stomach pains during the years the drug was administered to me.
Ever since this began, on the numerous occasions that I have been to doctors and specialists about my stomach problems I have continually asked if they have been caused by the Zoladex injections but I have always received a resounding no as a response.
My symptoms have been like a snowball gathering speed down a steep hill. I now have had to stop working since November and on a good day I have diarreah 3-4 times in a day, up to 11 times on a bad day. I get bad lower and upper back pains, a lot of headaches, I have to wear pads when I go out, I have urinary accidents, if I try to walk too far I get sore and itchy, and I can often wipe and there is blood. I am so malnourised now and losing a lot of weight. This often means that I "space out" and cannot take in what is being said or what is happening around me.
Luckily I am now being looked at by a specialist who used to work at the Royal Marsden hospital in London. At long last I am being told that they are 98% sure that the Zoladex has caused my condition, but they cannot comment if the correct cause of my conditon not being diagnosed for so long would have given me a different outcome. The top specialist also says that Zoladex is a nasty and aggresive drug. Even if the outcome would have been the same at least being correctly diagnosed would have stopped the doctors giving me the wrong treatment for years.
The specialist tells me that my condition is a rare side effect from having the Zoladex injections. However, I would disagree with this statement. From my research I can see that Zoladex was approved for use by the FDA (Food and Drug Administration) in January 1996, and I was given my first injection in October 1996. I was obviously a "guinea pig" for the new drug. My first husband and I discussed it recently and we both remember the doctors being keen to push the Zoladex injections onto me, saying that I would not lose my hair and I would still be able to have children with me only being 26. I wasn't really bothered myself, and I had already prepared myself for chemotherapy, but you think the doctors know best. As it turns out a few years later, I was told by the hospital that they were 99% sure that the injections had sterilised me! With me obviously being one of the first to receive this Zoladex treatment for two and half years for breast cancer, I will obviously be one of the first to have survived for twenty years after this treatment. Therefore also one of the first to now show the malnourishment and weight loss effects of being misdiagnosed for so long.
I was previously diagnosed with IBS (Irritable Bowel Syndrome) for years, when all the time I actually had IBD (Inflammatory Bowel Disease) caused by the cancer treatment. I was often treated as if the condition was "all in my head" and was given antidepressants which I never needed for many years. One of my major complaints is about these antidepressants. I recently paid for my medical notes and was very shocked by what I read. They started me off with a mild antidepressant, amitriptyline, which I can understand because yes in small amounts this can be used to treat the IBS which they thought I had. However, instead of continuing to look into what was the real cause of my problems, they did a few test and labelled me as IBS saying it was "likely".
Then as time went on I was given stronger and stronger antidepressants, and lots of problems were caused when they tried to take tme off them too quickly, and then put me on them again. I am naturally a very a strong woman who has coped admirally with many bad moments in my life before I was given mood altering drugs. However, these drugs changed me and actually gave me the symptoms which they were supposed to cure. I was also shocked to see from my medical notes that when I went to see one of my doctors about perimenopausal symptoms that he actually put me down as suffering from anxiety. Even though another doctor gave me treatment for menstrual problems the month before. I obviously was perimenopausal because I have not had a period for years now. Please see the attached article about The Viscount, Luke Montagu. What happened to him in a lot of ways mirrors what happened to me by wrongly being given antidepressants;
www.dailymail.co.uk/health/article-4173468/My-GP-gave-antidepressants-didn-t-need-20-years.html
Please make sure that you consider whether you wish to take Zoladex very carefully. Personally I believe this to be a very poisoness drug which needs to be removed from circulation.
It may be too late for me now. I am still being tested but the damage may be to great too fix, in which case I will just continue to waste away. I just want to ensure that this does not happen to anyone else.
If anyone has any questions that I can help with please do not hesitate to ask.

Myboyamelie Sun 08-Apr-18 17:51:39

Hi Nowhereelsetogo

I am really sorry to read your story. I haven’t been prescribed zoladex but I am just about to start decapeptyl for endometriosis. It’s a similar drug - think more often used in chemo for prostate cancer though. It sounds nasty. Posts like this really make me wonder about whether or not to take it.
Thank you for writing this - much food for thought.

Twotabbycats Mon 09-Apr-18 00:08:38

I am on long term GnRH treatment for endo, started mid forties, now 51. This was after an op to remove as much endo as possible. Good things about it - no bleeding; fully menopausal as long as I stay on it; pain almost gone after years of constant pain so have greatly reduced opiates. Bad things - three awful months when I started it - no instant pain relief, so couldn't reduce opiates for a while; hot flushes; utterly exhausted. Side effects pretty much gone now, though sex drive v poor and am still tired but I have other medical issues and take lots of meds that contribute to that. Plan is to keep me on it a few more years till I am hopefully naturally through menopause. I don't take HRT as would be counterproductive, just a vaginal oestrogen cream. I chose to continue this in preference to a hysterectomy. Overall it has been great.

Is it possible to remove your fibroid without doing a hysterectomy? They do tend to come back though. I would have thought removal followed by GnRH would be the best course of action. You will be going through the menopause soon anyway so there's no escaping some of the symptoms you mention!

Twotabbycats Mon 09-Apr-18 00:10:21

Ah sorry just realised this is a zombie thread! Oh well hope it helps someone.

nowhereelsetogo Mon 09-Apr-18 18:38:21

Hi Myboyamelie,

Good luck with whatever decision you decide to make. I hope it works out for you and wish you years of health and happiness.

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