Zoladex and periods: Hey ladies my gyne... - Endometriosis UK

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Zoladex and periods

Billiebear19 profile image
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Hey ladies my gyne started me on zoladex afted I was admitted to hospital for 5 days with severe endo pain one month after lap I had the injection on the 20 th feb since then I have been in horrible pain all my overies uterus legs hip even in my belly botten and Intestines averything is so sore is this normal?

Enyway so I started my period 11 days late but Its more painfull and heavy then ever and I feel so poorly with it does anyone know if this is normal also ? Im hoping it all cal sdown after 2nd injection I could really do with abreak lol :(

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Impatient profile image
Impatient

It is normal - this is what is called the flare stage. the 1st implant swamps the body which too much hormone this causes everything to be a lot worse due to the overload - but it doesn't last and the overload causes the pituitary gland in the brain to shut down which stops sending signals to the ovaries which go to sleep and they don't send signals to the endo which goes to sleep and that is what these drugs should be doing.

It sure is not nice getting through the flare stage but it is normal. Some lucky ladies do not have much in the way of a flare - some of us on the other hand have a very grim time of it.

The shut down of the pituitary gland has other reactions on the body - not just the ovaries.

It shuts down temperature regulation which causes your body to hot flush and cold chills one after the other .

It can stop your short term memory from function well or even at all.

It may impact on the blood pressure and heart beat too causing a spike in Blood Pressure which can lead to heart palpitations, sore bones, veins and muscle in legs and arms, even panic attack feelings.

And numerous other side effects which ca hit you at any time.

It can be ghastly - and if you do have more than you can cope with then my advice is to stop the drug and not hve the next implant. It isn't cure - it is only taken to improve your endo pain and quality of life and it does not do that for everyone. So if you do react badly then you are much better off having a period and taking pain killers which you can control and which you have probably been doing for several years.

You might find some side effects improve if you take HRT to add back some of the hormones that are currently not being produced...again this doesn't work for everyone and may make things worse, but might be an option worth trying. Speak to your GP to get HRT if you want to try that.

There are lots of side effect - the most common ones are on the patient information leaflet - which you probably were not given as most ladies don't seem to be given it - even though by rights they should be.

It is available freely online.

medicines.org.uk/emc/medici...

and on this page

medicines.org.uk/emc/medici...

There is a lot of data about the GnRH drugs like zoladex online - so don't be shy bout looking it up. Other similar drugs are Lupron/Prostap Decapeptyl and so on.

All much the same in terms of how they impact on the body.

They are VERY powerful drugs - and with that comes a pretty high risk of some rather unpleasant reactions to them. You might be fine one minute then hit by several side effects within a very short space of time. It can be quite an exhausting roller coaster ride for many ladies (and men) who are given these drugs whether for cancer or endo.

and here are some light reading websites for you too:

nwhn.org/lupron%C2%AE-%E2%8...

lawyersandsettlements.com/a...

and the biggy

lupronvictimshub.com/index.... is full of info about GnRH - the benefits and the risks.

At this point in time - take pain killers when needed - zoladex is not a pain killer.

Get as much rest as you can when you feel you need it. Stay off work if you need to. These are chemo hormone drugs - you are entitled to flexible time off as and when required just like cancer patients on the same drugs. It may be the odd day or couple of days then you feel okay to work a bit then need more time off and so on, rather than taking one big blockof leave. i know most emplyers these days penalise you for the number of separate occasions off sick rather than the cummulative total. but they cannot do that to you when on chemo drugs of any sort. At least if they do - then you have a strong case against them for discrimination under the Equality Act, and they wouldn't risk the bad publicity.

Hopefully they will be undertsnading and flexible - they all know what chemo can do, and it isn't a nice experience for many people.

With a lot of luck you'll not react too badly with side effects, and hope that is the case for you - but many of us have quit and would never touch the stuff again. knowing what we now know about it and the risks involved. It is your decision alone as to whether you carry on of stop - don't make that decision till a day or two before the next one is due - when you over the flare stage and have a better idea about whether it is working for you or not.

emmaibiza profile image
emmaibiza

So glad I found this post. I posted last night with the same problems as billiebear. I have been off work all week with extreme pain that only tramadol seem to help but makes me feel high as a kite. So glad to see the reply and that this is normal. I have also been wondering weather to carry on with zoladex as treatment as I seem to be in more pain than ever. I think I'll have the next one and see how I go.

I also spoke to my consultant this morning as I am worried about how much I've been bleeding for 6 days he said it is normal but I should not bleed again after this. I need to ring back if I'm no better in a couple of days.

Hope you feel better soon hun. It's a relief in a way to know someone is experiencing the same as me.

Keep me posted on how you are doing

Em x

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