What can I do next?: Hi there! I was... - Endometriosis UK

Endometriosis UK

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What can I do next?

Squibby85
Squibby85

Hi there!

I was diagnosed with endo 3 years ago, three laps and a tumour removal later, my pain increased and I opted to go onto Zoladex. Im in month 5, no HRT as it made me so angry and only suffering with hot flushes - currently pain free which is so incredible for me!

My question is: I have one last dose of zoladex and then not sure where I am heading. I have one year of my nursing degree left so would pref like something to keep me pain free until then end of that lol!

Ive been doing a lot of research into the Mirena and not sure I want to do that......any ideas of next step would be great to hear!

3 Replies
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Hi Squibby,

So sorry you are having to go through all of this.

The response of women to having the Mirena seems to vary hugely, from even worse agony … to being totally pain-free: so, it is hard to advise.

I had the Mirena fitted in my mid-50s, as I had to stop the pill at 50 (been taking it for most of my life for Endo, tho' the Endo was not formally diagnosed until I was in my late 30s).

Compared to the horror stories I have read on here, I think my Endo was fairly mild, as the pill did keep it at bay for most of my fertile years (never wanted children, happily childfree!). However, post-pill the pain became increasingly unbearable, so I had a Mirena fitted at about 53-4. For me it was wonderful, 5+ pain-free years, and all has been fine since I had it removed, as I am - presumably - now well, well (!) past menopause by now.

However, it took 3 months for my pains to subside once the mirena was fitted, and ... I don't now how long you would need to wait until it is fitted.

All this, plus the possibility that the mirena might not work for you - in fact, could make things worse, as it does for some sufferers - could all eat away a lot of your last year of the nursing degree.

So, I wonder if you should try alternatives, to the mirena, in this last year???? Have you been tried with progesterone-only pills?? (NB I don't know what zoladex is, or does). Just that they might be easier to get, and take … and then stop... if they don't work, or make things worse, than having the mirena. The mirena contains progesterone: the dose is small, but with the coil in the uterus, it is in position to target the troubled area directly. Meanwhile, progesterone-only pills mean it is all over your body, but I believe the pills have worked for many on here. [NB general hrt has oestrogen in it, which would make endo worse: hrt only helps if it is progesterone-only].

Maybe wait and see what other responses say, but I'm concerned that if the mirena doesn't suit you, it could make the last year of your degree even worse.

Also, could you try to see some 'mega-star' Endo specialist? And have you been seen by one of the UK's endo-specific, special clinics?

Hope this helps, take care,

Gritty

Wow Gritty,

Thank you so much for such an extensive message back to me! I truly appreciate it and yes I think you're right. having something like the Mirena inserted with such an unknown is probably not the best thing to do!

I am a British citizen but have been living in Australia for 10 years now! My mum came across your website hence why I joined (I hope you don't mind>!>!) all the "help groups" here in Australia that I have found have been nothing but profound whinging and sharing stupid videos, I needed more of an adult talk which I am finding here!

Zoladex is a monthly injection I have been prescribed for 6 months, predominately used on people with cancers, this injection has put my body into a state of menopause (as you know post menopausal women don't have endo!

Being pain free has been incredible but the injections aren't a long term thing as they could eventually put in into menopause (im 33).

I will speak with my specialist in a month or so's time about the different progesterone pills that are out there! I truly need the next year to run smoothly!!!! :)

Thank you again for your comments x

You are welcome. I hope it all works out for you! Best wishes for your degree!

G x

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