Need some advice...

[Julie551]

I have had endo for quite a few years, I had a lap completed in February 2012. The cut some out from my left side, but found a mass of tissue behind my uterus and cervix which believed may have been a tumour. A biopsy was done one a sample of tissue at the lap and thankfully it was endo tissue. I am unable to lie on my back as I lose the power in my legs. After surgery they put my on microgynon 30 back to back until my post op appt 6 months later, this stopped working for me, so they put me on zoladex implants. I suffered harsh side effects, hot sweats, severe night sweats, cold shivers, chronic headaches, dizziness, short term forgetfulness, loss of balance, unable to sleep, so tired and have become very emotional. I got my last injection 18th august thankfully, that day couldn't come fast enough, but now I am eager to know when the side effects will stop. Any help will be welcome, x

[Impatient]

Zoldex side effects have no set time frame for stopping. The drug shuts down the pituitary gland and the drug remains in the body for up to 4 months after the last implant went in. The strength is not enough to keep the pituitary shut down - but it is entirely at the mercy of your own body as to when the pituitary decides to 'wake up' and begin manufacturing all of the hormones. Some will get back in to production and topped up quicker than others, and as each one comes back online so to speak, the side effects you felt in their absence will ease off.

The only one we know about is the sex hormones which during research trials took on average 6 months to restart ovulation, so that's the middle ground - half of women will be quicker half will take longer.

As for the other hormones, I would expect those to be given a higher priority by the body than sex hormones, so you might notice heart rate and blood pressure being regulated better earlier than you would notice ovulation.

And temperature regulation ought to be recovering quicker too.

It was about 3 weeks before I really noticed the hot flushes getting further and further apart in time and weaker too when they did hit. My period returned after just 1 month which was disappointing at the time, I had hoped for a longer break given how ghastly the experience was with side effects.

You still need to remember that for the purposes of safe sex if you are sexually active - still keep using condoms or barrier methods till the beginning of December - even if and especially if you do have ovulation and a period before then, the traces of the drug can remain in the body during that time..and whatever it did to you it can do to a growing foetus - including depriving it of growth hormones at the most critical time.

Apart from that aspect, and remembering to keep hydrated all the time you are still having hot flushes, it is very much a waiting game.

For some people it can take months or even years for the pituitary to get up to speed with producing a particular hormone, and in some rare cases the system never recovers leaving the patient with long term to life long side effects.

HRT if you didn't take it before, can help to ease off some of the side effects while you wait. It may make you feel worse - but it certainly would be worth try at least, incase you can improve things using it till the pituitary gland wakes up. HRT doesn't replace ALL the hormones, so it won't resolve all of the side effects caused by the hormones that are not being replaced.

Hope you don't have much longer to wait till you are feeling better, though when it does reactivate the ovaries again - it will wake up any existing endo and put you back at square one as far as the endo is concerned.

[Julie551 in reply to Impatient]

Thank you so much for replying. I'm still in pain even on the injection though it may have eased it a bit, especially when I am lying down which effects my sleeping pattern a lot. I have my next hospital appointment 11th November to see what they intend to do next. Will have to wait and see. Thank you and take care, x