Zoladex (GnRH agonist) + simultaneous HRT... - Endometriosis UK

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Zoladex (GnRH agonist) + simultaneous HRT - help!

hayley_annette profile image
3 Replies

Hi,

Ten years ago I had the delight of 3 x 3.6mg injections of Zoladex (Gosrelin) in preparation for laparoscopy.

My body and mind quickly deteriorated whilst on the drug, and within a year of starting those injections I suddenly became wheelchair/bedbound. I have required full time care and have been unable to work since.

The diagnosis was 'fibromyalgia' which we all know is a trash-can diagnosis. I never did figure out the relation to Zoladex though, until recently. My symptoms match exactly those of everyone else who has been permanently disabled by this drug and others like it, such as Lupron.

I have been looking back over my medical records today. I did not receive any "add-back" therapy or HRT until AFTER surgery. Which was:

Ethinylestradiol 30 microgram / Levonorgestrel 150 microgram

prescribed for 6 months by the looks of things.

I am trying to find the guidelines on add-back therapies in the NICE Guidelines for Endometriosis, but it does not go into specifics at all in regards to the add-back. However, from other documents I am finding in individual NHS counties, I am getting the impression that I should have also been on HRT add back from the VERY BEGINNING of Zoladex treatment. Zoladex began nearly four month before the laparoscopy and subsequent HRT.

My question is:

- Should I have received HRT as soon as a began Zoladex (Goserelin)?

- Is prescribing HRT add-back ONLY after laparoscopy then norm when using GnRH agonists?

- Was I even prescribed the correct oral HRT?

I am haunted by a memory of a clinician at the gynae dept saying "Oh no, they put you on the wrong one!". However, I don't remember if that was before or after the surgery.

Any advice or knowledge you could share would be very appreciated, and hopefully will help inform other woman in the same position going forward.

Thanks!

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hayley_annette profile image
hayley_annette
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3 Replies
Lindle profile image
Lindle

The discussion of add back HRT is in the ESHRE guideline. They were issued in 2005, 2007, updated in 2014 and more recently last year. So if it was 10 years ago the 2007 version would have been current up to 2013.

The actual guideline from ESHRE will be archived now and while I had a copy when starting all my research 20 years ago it will be on an old clapped out computer that I can't access now. I have found it here though:

poliklinika-harni.hr/images...

It didn't actually say HRT had to be taken but the view was that for 6 months any bone loss without HRT would be recovered by 12 months so potentially after 6 months permanent loss could occur presumably. It only mentions other potential symptoms in passing. It might be useful reading but unfortunately couldn't be used to prove anything. x

hayley_annette profile image
hayley_annette in reply to Lindle

Thank you so much, I hadn't come across ESHRE before. Even though it may not be definitive, this looks useful! Saved to reading list. Appreciated!

635703 profile image
635703

with zolodex it’s licenced for 6 months only but if you add back the missing hormone via HRT this waivers the 6 month rule. I had tibilone on month 2 of zolodex 3.6mgs.

Told this Bt Endo Specialist who is a Professor as I attended a teaching hospital which is a BGSE accredited Centre and my surgeon is an Endo Specialist.

Hope this helps 💗

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