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Endometriosis UK
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Zoladex...6 months max??

Hi. I'm hearing everywhere that people take zoladex for a lot longer than the licensed 6 months! How can hospitals do that. Throughout my monthly appointments, every doctor who gave me an injection told me something different...one said 6, one said 9, one said 12 and then when i had my review, the doctor said 6 only. Which is it?? Not that i would have taken any more, 6 month pain free was great...the horrific side effects were and are definitely not. Who do we believe??

X

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I believe 6 are the recommended and usual course of them. If people have complicated medical history they can be offered more - if had 51 myself as I have multiple organ damage too. As long as you have regular bone scans and monitoring then you should be okay. People with cancer also have more than 12 sometimes

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Hi! Sounds like you are really going through it. Who would be a bloody woman!! Im drawing the line at 6, there has to be more longer lasting forms of treatment or better pain relief. Take care of yourself. Much love x

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Thank you lovely! This disease is nasty. Have you tried the mirena coil - I’ve heard mixed reviews - I guess some bodies get on with it and others don’t. Take care too and all my best wishes. Much love x

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Hi, you are right that it is licensed for 6 months for endo. So that would be the normal course prescribed. But doctors can prescribe 'off licence' too. That means they can give a higher dose, or give it for longer, but the risks need to be taken into account. I believe the big risk with zoladex is to bone density, which I think is why it is only licensed for a 6 month course.

When zoladex is given as a cancer treatment, I believe it's often for much longer than 6 months. I guess if you have an aggressive cancer, the effects on bone density are less of a worry. So it's all about weighing up the risks. Likewise if zoladex really works for one us with endo, it might be worth accepting the risk to bones.

If a doctor prescribes off license, they should include you in a discussion about the risks. It should be a joint decision.

Hope that makes sense?

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Yes it does. Thanks for your reply. I wished id never touched it. Ive wrote a letter to the consultant explaining this and have complained about the lack of info etc and im having no follow up?? They are leaving me without any help now. Probably wont get me anywhere but i need to say how i feel. Much lovexx

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I'm sure it's good to write. Doctors can't learn unless they get feedback like this. So good for you!

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Hi, I'm about to be out on it for 3months before a hysterectomy because I have severe endo on bladder/bowel/ovaries. I may have to have a bowel resection and colostomy. Can you tell me the side effects you experienced? Thank you.

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Hi! My endo is in the same condition as yours! Id like to say everyones eperience is totally different and like all medication, some people are totally fine. I had 6 injections and the positive side to this was i was totally endo pain free and its been amazing. I dont kno how much it has improved any endo because my consultant is ridiculous and i have no follow up appointment. Thats a different story. Ive been left with several side effects that really started at 4 months so the fact youre only taking 3 might mean you will be totally fine. I had all the usual hot flushes etc. I lost over a stone in weight and have sore burning joints, im tired all the time, wasnt sleeping and being sick. My hair has thinned dramatically and has started falling out more. The worst side effect for me, along side my hair, is the decline of my mental health. If you already have an issue with mental health or anxiety i would take caution. Apparently doctors need to take care when prescribing it! Everyone around me watched me change. I became more withdrawn, more panicky, anxious, paranoia and crying. This all came to a head two weeks ago when i was suicidal. The consultants refuse to accept this was from zoladex but its too coincidental that its all happened since taking this drug. I ate very healthily and exercised throught. I really looked after myself. The 6 months was pain free from the endo side of things...it was just everything else went wrong and i believe it was the injections. My family and friends and gp believe it too. All of that sounds really scary but as i said, not everyone would have this and 3 injections to prepare for an operation that could make a prolonged improvement might be worth doing. Make sure you have loads of support around you and your doctor gives you as much info as they can. Maybe keep a diary and if you notice side effects you can decide if you want to continue. I had 6 but wont give me a long term solution, they wont give me a hysterectomy yet, but in your case the 3 will prepare you for further action. Dont feel forced into anything. I hope this hasnt freaked you out. I wish i had been given more info before i took it. In hindsight being pain free hasnt been worth the other effects. Hope you get sorted with this, being a woman is shit sometimes. Please take care and remember that lots of info and support will be the key here. Much love x

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