Endometriosis UK

Zoladex injections (6months) with Everol 50 patch

Hi I'm in the U.K. With pcos diagnosed 5 years ago and endo diagnosed last year. Had most contrceptive pills had the mirina coil and the hospital gynaecology put me on Yasmin (6months) this has caused me really tearful and low mood, and pain has been worse for last 2 months and bleeding is worse. Been back to the gynaecologist and they have now said they want me to go on Zoladex and Everol 50 patch to combat the hot flushes.

Now I agreed to this and have the prescription form as I asked what the side effects were and he said mainly hot flushes which the Everol is supposed to counteract. Upon reading online about zoladex the side effects seem horiffic and the mood and depression something I suffer from currently I am worried is going to be worse with this along with the headaches I currently get with takin the combined contraceptive.

I would be grateful if anyone could give me any information or experience of taking this medication and the side effects. I am not seeing my gynaecologist for another 6 months now so I am now panicking about what to do give it a try or .... I'm worried it will make me have time off work which I cannot afford to do!

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It's a bit like the coil in that for some women it works great and for others it's awful. It is a very powerful medication that creates a chemical menopause.

The only way of working out if it helps us to try it, it just depends how bad your symptoms are and what side effects hit you.

I unfortunately had a very adverse reaction to it with a lot of neurological cognitive effects along with nausea and the bone aches etc .

In my case it was far worse than putting up with Endo so I had to stop after two months. I did end up missing days at work. It took about 6 to 8 weeks for all the side effects to clear.

Other ladies, particularly those in daily pain do sometimes seem to benefit.

I had a severe advanced RV Endo nodule and RV Endo is believed to often be hormone resistant plus the nodule was sizeable and solid fibrous so wasn't really altered much by the drug.

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Thank you. I'm feeling a little better about it as I keep thinking I can't worry about side effects that might not happen..

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You'll know in month 2 or 3 if it's a viable treatment I'd say. Like the coil or any new hormone treatment the first month of hormone disruption is usually heavy weather.

Good luck and I hope it works for you x

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hi starry, was that 6 to 8 weeks after your last injection?

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No, that was counting from the 3rd injection date that I missed on stopping. (End date of last dose rather than start)

The crippling joint pain had me literally hobbling and lasted so long that I got worried I had permanent effects. I was very thankful when it started to fade.

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Did the cognitive stuff go away too?

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Yes that resolved very quickly ( thank heavens I literally couldn't structure a sentence or remember anything) and my period returned just a few days late which was reassuring. It was only the bone and joint pain that persisted.

I should add that took it with tiblone and in cycle 2 my surgeon double the dose (to a level twice the usual approved limit) which did lessen the worst of the cognitive effects , but not enough to make a third dose viable for me in my individual circumstances.

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my anxiety appears to be getting less( i hope) , but still got that heavy fog in my head and memory problems... hoping it just all goes away!!

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Hello Shanna.

I’m going to apologise in advance because this is going to be a bit of a long reply, but I hope you’ll bear with me.

Zoladex is a GnRH Analogue/Agonist. This class of drugs suppress your body's production of oestrogen / progesterone levels and thereby your monthly cycle. This can bring relief from cyclic Endometriosis symptoms, but (as with all medications) "GnRH Analogues/Agonists" have can have significant side effects; such as a potential loss of bone density, ‘brain fog’ (memory and concentration problems), and mood changes (including depression and anxiety etc.).

These side effects are caused by the hypoestrogenic (oestrogen-deficient) state Zoladex induces, which is why a complementary dose of "add-back" HRT is often prescribed alongside them; the HRT "adds-back" a little bit of oestrogen to help ease some of the drug's unpleasant side effects. You can also get a bit of a "flare" of side effects when you first start Zolodex treatment which dissipates after the first few weeks - but again some women find "add back HRT" can help ease this too.

Every women's experience on these kinds of hormone treatments is completely unique and it can take a bit of experimentation to find the dose of “add-back” HRT. Some women only need a little bit, some women find that they need quite a bit more oestrogen / progesterone "added back" (via HRT) to effectively manage Zoladex’s side effects, and sadly some women find that with or without “add-back” HRT they just can’t get on with Zoladex at all. I myself have undergone two courses of "GnRH Analogue/Agonist” the first experience was good and the second not good at all, which was something I really wasn't expecting.

Because "GnRH Analogues/Agonists” (Zoladex included) are known to impact upon mood, the drug’s manufacturer’s state on their product guidance under their "Special warnings and precautions for use” that "There is an increased risk of incident depression (which may be severe) in patients undergoing treatment with GnRH agonists, such as Goserelin. Patients should be informed accordingly and treated as appropriate if symptoms occur.”

This does not necessarily mean that a patient who has previously suffered from low mood on other treatment will definitely suffer from low mood as a side effect of Zoladex. However, given the previous mood changes you experienced on Yasmin, this warning does indicate that you, your loved ones, and importantly your Specialist and GPs should all bear in mind that it is possible that you might also suffer mood changes while undergoing Rolodex treatment and have a plan put in place to deal with such side effects quickly and effectively if they develop. Such a plan might include:

1) A comprehensive plan to monitor your treatment and any side effects which you may start to experience which allows your GP to check in with your prescribing Endo Specialist for expert advice if you start to suffer any side effects. Perhaps a monthly appointment with your GP just to "check in" and see how you are feeling.

2) Plans to adjust your “add-back” HRT dose if/when necessary to see if you require a slightly different dose to effectively prevent your mood from dipping.

3) Perhaps making plans in advance for your GP Surgery Counsellor to be provided with comprehensive details of the impact Zoladex can have upon mood so that they are able to offer you appropriate support at short notice if you need it.

4) Perhaps discussing (before you start Zoladex treatment) other options such as antidepressant medication that might be prescribed to help support your mood and allow you to continue treatment even if you do suffer side effects once you've started it.

5) A comprehensive plan that allows you to cease Zoladex treatment at any point you feel you need to.

Discussing and agreeing these kind of things calmly in advance means that you will have done everything you can to put together a solid support network - which in itself can be very reassuring and mood-boosting. But it also means that, if you do start to feel your mood dipping, you have an action plan in place to help you take action to address that immediately rather than you having to put a plan in place from scratch at a point when you may be starting to feel a bit overwhelmed.

Detailed guidance regarding Zoladex treatment (provided by the drug's manufacturer) can be found here:

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

It may be helpful to print this guidance off and get your loved ones to read it so they are fully informed of what your treatment entails (this will help them understand how best to help support you).

Similarly, it may be worth printing a copy of this off and giving it to your GP and anyone else involved in your care while you are undergoing treatment (such as a Counsellor or Therapist etc…), as it saves them time having to look it up during your appointment with them. Even after reading these guidelines, if your GP feels they don't know enough about this kind of specialist prescribed Endo treatment to effectively advise you, then you can ask them to contact Zolodex's manufacturer - as all the big drug companies have pharmacology advisors who are there to give GPs and clinicians specialist advice about their products.

The decision as to whether Zoladex treatment is the right treatment for you is one only you can make and it is a tough one. But just as it is your decision to undergo treatment, it is also your decision to stop it if at any point you start to feel that it is not working out for you. There are many women whose Endo symptoms were greatly relieved by GnRH Analogue/Agonist, just as there are many others who found either their Endo symptoms were not relieved or that it caused them to suffer significant side effects.

The approach I take is to try and make sure I’ve familiarised myself with the manufacturer’s guidance and get a "what if this happens" plan in place, so that I can prepare myself for the worst case scenario while still hoping for the best outcome.

Again really sorry for the length of that reply, but I hope it's helpful, x X x

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Thank you I have read about it and will talk more with my family and partner. I also work where I can ask some medical staff / counsellor and make an informed decision

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That's wonderful - sounds like you're doing everything you can to secure the best treatment outcome and you've got a really solid support network. Good luck & I hope you are feeling much better soon, x X x

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