zoladex or hysterectomy?

[BSIMC]

I have just had my 7th laparoscopy for endo, and my consultant has suggested my options now are hysterectomy or zoladex. I am in so much pain and have put up with this miserable thing for so long I am leaning heavily towards the hysterectomy. I am extremely blessed to have children, but I have not yet reached a point where I can definitively say I would never want more, and I am worried I might regret the decision to have a hysterectomy (I am 34). On the other hand, I am so sick and tired of the constant pain, mood swings, inability to have sex etc. that I don't want to embark on a course of treatment which might have similar side effects and effect my ability to cope with things. I would really welcome feedback from anyone who has tried the zoladex or had a hysterectomy, and your experiences of the side effects and benefits. Thank you in advance!

[Tboag]

Hi, a hysterectomy isn't a cure for endo, and although can help calm things down it might not,

I think with regards to thinking about more children, in my opinion if you have children then you are (like you said) blessed as am I, if a hysterectomy will help with your quality of life then I would sway that way, it will be better for you and your family if you are symptoms free or if it is easier to deal with life.

Good luck in making the right choice for you, xxx

[venusx5]

Hi there I'm 23 and just finished a 3 month course of zoladex injections, I had surgery to help remove my endo as I'm wanting to try for kids and then straight after surgery got started on the zoladex, honestly my true opinion is its a blessing in disguise I know there are some side effects but just not having a period has helped me have a bit of a break from reality (although strange feeling now as I can't wait for them to start back so I can start trying for a baby! Although dreading it at the same time!) I had hot flushes with it and the odd cramps etc but no where near and certainly not as unbearable as I get with my period and leading up to my period so I'd Definately say its worth while doing it, they will probably offer it for 6 months for yourself? I think I could of had it for 6 months but as wanting to try for a baby sooner opted for 3 months. Hope that helps you 😊 xxx

[Brownlow]

Is your consultant and endometriosis specialist or a general gynae. Check if they are on this list bsge.org.uk/ec-BSGE-accredi... Either way I suggest you get referred to an endo centre on this list for a second opinion.

Zoladex works ok for some women but it is a very brutal drug and there are potential side effects and risks that you need to be aware of first. It ultimately shuts down production of oestrogen in the ovaries. This has the effect of reducing the endo but once Zoladex is stopped, the endo returns. Zoladex is not really something you can take for years on end. I think the manufacturer only recommends a max of 6 months. Any longer than that and your doctor is prescribing off-label.

A hysterectomy is no guarantee that your situation will be resolved. What sort of hysterectomy is being proposed? Does it include oopherectomy (removal of ovaries)? Even with the removal of ovaries we still produce oestrogen in our adrenal glands and fat tissue. Therefore any endo that is not successfully removed can cause problems after a total hysterectomy as it is an oestrogen driven condition.

I might be wrong as I don't know the full details but I wouldn't be comfortable being operated on by the same surgeon so many times without any resolution. Try your best to get second or even third opinions from endo specialists.

Good luck. x

[BSIMC]

Thanks for the helpful comments. I have had 7 laparoscopies but only two with my current consultant as my previous consultant retired. The laps have always been successful in giving me a couple of years' relief in between, until my last one in December which appears to have been ineffective - hence why I am now considering other options. I was not aware of the bsge and my consultant is not on there so thank you for that useful tip - do you know can I just ask my GP to refer me to the nearest one? Thank you also for the feedback on the Zoladex - it's helpful to hear other people's experiences xx

[Brownlow in reply to BSIMC]

Please read Lindle's very informative post on how to deal with your GP and get referred to the correct specialist and not a general gynae. healthunlocked.com/endometr...... Many general gynaes are inexperienced at dealing with endo and this is what has happened in your case. Your GP has let you down by not referring you to someone who specialises in your exact condition.

Hopefully a good endo surgeon can help you without the need for a hysterectomy or indeed Zoladex. Good luck x