Zoladex injection? : Hi anyone had this... - Endometriosis UK

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Zoladex injection?

Minchoo profile image
8 Replies

Hi anyone had this?? What were the side effects and benefits? I want to have ivf but need to get my endo treated. They have in the meantime saying to give me this?? Before my surgery?

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Minchoo
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JadeH92 profile image
JadeH92

Hi Minchoo, I had Zoladex for 3 months along with Livial HER as add back therapy. For me personally apart from mild hot sweats and mood swings (which according to my partner are common for me anyway hahaa) I didn't get any other side effects. As for treating my pain, it helped slightly. My periods never really returned however they say that's because of PCOS which was diagnosed afterwards.

So I am currently on Letrozle to help me ovulate.

I know there are lots of horror stories online about Zoladex but for me personally it wasn't that bad. It was more the emotional side that I was going through the menopause and all my friends seemed to be getting pregnant as the same time.

Hope all goes well and best of look with your surgery and your IVF!

Minchoo profile image
Minchoo in reply to JadeH92

I hope you manage to ovulate. I am a bit worried about the side effects. I think it’s just the one injection. Fingers crossed for you. Have you thought about IVF? If you have PCOS it can help? X

JadeH92 profile image
JadeH92 in reply to Minchoo

I think people always want to tell the bad side of things (its human nature) but I know that thousands of women have been on it and they must prescribe it for a reason? Only you can decide what you think is best for you. I think last month the Letrozle worked but I was too impatient and only waited a week after my pissed period to take Norethisterone to induce my next period so I could start again. So I'm hoping it will work again this month I just have to wait 4 weeks instead of 2 before I do a pregnancy test of see if I get my period naturally. Clomid didn't work but my consultant told me I can be on Letrzole for 9-12 months as long as I am ovulating if I am not ovulating or I've not got pregnant in that time it will then be IVF.

Minchoo profile image
Minchoo

Just had PID and in pain. My right Fallopian tube has swollen up. Just been on iv antibiotics and they want to do surgery in 6 weeks for my endometriosis. Including removing the tubes. She wanted give me a shot to stop the flare up. With ivf and antibiotics and pain killers, I think my body needs to rest off meds!!!!

Zoladex Warning

Hi,

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.

My last visit to the hospital confirmed that an arthritic condition Henoch-Schonlein Purpura/ Polartgropathy which I had in 2006 was also caused as a side effect from the Zoladex.

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 two 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 bowel issues caused by the Zoladex injections. 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 tests 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 me 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 these mind altering drugs. However, these drugs changed me and actually gave me the symptoms which they were supposed to cure, including thoughts of suicide!

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;

[link deleted]

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.

Finally, I have a question of my own. I started fitting and was diagnosed with Epilepsy in 2003. From research I have recently done, I now wonder if this may be a long term side effect of taking the Zoladex too. If anyone else has experienced this please let me know.

Minchoo profile image
Minchoo in reply to

Oh my god that sounds terrible. I am going to get second opinion from a BGSE about it.

Wow that sounds awful. I am so sorry. This sounds like a legal case? I know every drug has a side effect but wow. I pray you get some relief.

I cannot answer your question and hope someone on here will - but will pray for you.

Minchoo profile image
Minchoo

Quick update they want to go straight to surgery - but in a hospital with no endometriosis specialists. I am on the emergency list, but I am low down. Will ask to be removed off it. I have a appointment with BGSE Center on Thursday!!! I really want this looked at more closely and I am only in pain due to the PID.

Wish me luck!!

Minchoo profile image
Minchoo

Further updates!!! I am going home. They said I would need surgery to manage my infection. I said if I have no symptoms now I feel better and don’t want multiple surgeries. However, I will come back if needs be. Right now feel fine apart from a niggling pain.

They are not prepared to treat my endo and I would rather not have unnecessary surgeries. ESP as I am feeling better. Fingers crossed I do get better ASAP.

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