Endometreosis - coming off zoladex - Endometriosis UK

Endometriosis UK

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Endometreosis - coming off zoladex

Mini22 profile image
Mini22

I was diagnosed with this from the age of 16, i tried a range of medications and operations and even had the coil which damaged my womb and was removed surgically due to being embedded in a ball of clots, I have been on zoladex for 2 years as my case of endometrosis is very rare its within my cells and behind the walls of my uterus so the medics cant get at it, i am now 21 and at university, just went for my latest injection and got refused treatment as the doctors at surgery made a decision without me about my health, i am aware about the trouble it can cause for bones but i took the decision to have my life and support my bone health with estrogen and calcium supplements and plenty of walking and impact sport, im worried about going back into the state i was in and reading the scenarios people have had after coming off zoladex has been helpful and made me less anxious as it doesnt seem as bad as before so fingers crossed....

3 Replies

Hey Mini22 I’m outraged on your behalf! How dare they take this decision about your health without consulting you! If Zoladex is truly working for you, then you should be allowed to continue. I can understand their reluctance, so I suggest arming yourself with facts about Zoladex - the side effects and long term risks, and how it can potentially affect your body and future. If you are 100% certain, can you find a bsge specialist near you to go over your options? Good luck!

Mini22 profile image
Mini22 in reply to Moonglo

Hi what is a bsge specialist I have seen many consultants at a variety of hospitals.

Moonglo profile image
Moonglo in reply to Mini22

Have a look here: bsge.org.uk/centre/

There are many ‘consultants’ but these are the ultimate authority on endo.

I was in a similar situation to you where I felt my hospital consultant was backing me into a corner with the treatment he was prepared to offer me. I felt he was going to refuse to give me Zoladex. I asked my GP to refer me to a bsge specialist on the NHS and not only did they see me relatively quickly, they did all sorts of tests on me and discussed their findings with me on the same day - they were aware that I had to travel a long way to get there. He also asked *me* what *I* wanted - the first time someone hasn’t patronised me over my own body. And he agreed that I could have Zoladex for the rest of my fertile life.

I know you’re younger, and they’ll tell you to consider your bones, future pregnancy, etc. That’s why you need to be 100% that you want Zoladex, and for how long.

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