Zoladex & Livial - A match made in heaven?

[SimLuc7302]

Dear all,

This is the third time in my life that I am having a chemical induced menopause; I am 42. My endo specialist suggested an initial 3 month course of Zoladex injections and Livial tablets, and the treatment works to extend for up to 6 months. I am nervous and excited all at the same time.

Nervous because I don't know if it will work, if it will harm my bones, affect my fertility, bring out other problems etc. and if it doesn't work, then what? (My endo specialist's registrar (I am very unhappy with her) told me that if the Zoladex does not work that the problem won't be gynaecological! I wasn't impressed. I know how I feel; I know my body and the pain it has endured for 29+ years!I know the difference between the various cramps - gynae-related, bowel, bladder etc - I was fuming, but said nothing (I just know I don't want to see her again). The suggestion therefore is that I am, what, making it up?!)) Nevertheless, I understand I will also be referred to a pain specialist clinic. Has anyone attended one? Any experiences to speak of?

I am excited on the other hand because if it does work then I will be pain free and able to get on with my life. It has been on pause or mute for many years now. I have been surviving, just not living.

Please do kindly share your experiences of Zoladex and Livial as it would be good to gauge how others have felt/are feeling? I am trying to cope with some side effects that are new to me and I do hope they settle/stop soon though I appreciate it has only been a week.

Thank you in advance...

[JeanOsborne]

Hi Zoladex doesn't always work for everyone so bare that in mind. However saying that I've found it a godsend despite the initial flare up , hot flushes and a couple of other things - depression which I had previously and sever constipation. Now on Laxido to help with that. I don't regret trying it. Good luck

[SimLuc7302 in reply to JeanOsborne]

Of course I appreciate that not everything is for everyone. It is interesting though as I think it will help me be more aware. Thank you Jean.

[Tboag]

Can I ask you, are you bring treated in a BSGE centre?

Have you had endo thoroughly exsiced?

I'm awaiting my MRI results, and have a feeling my consultant might offer me these drugs do I will be following you post,

Good luck

Xxx

[SimLuc7302 in reply to Tboag]

Hi.

Yes, as I discovered that such centres existed (in the last 2 years), I asked my GP to refer me to my local one and gave him the name of the person I wanted to see. This gynaecologist is my fifth in 23 years and he performed my 8th laparoscopy. Yes, he did excise the endometriosis but he was unable to remove it all. Previous surgeries included diathermy each time but they were not endometriosis specialists. They just bought me a little pain free time, each time.

I'm already struggling with side effects. Hot flushes at times; heavy, lower pelvic pain and this is a strange one: cramps in my calf muscles.

Thank you for your good luck wish. Good luck with your results. x

[sarahgregory]

Hi,

I am very new to all this (see my post sharing my story so far) but I started taking Prostap, which i am told is the same as Zoladex, last Friday. I am on the monthly injections. I haven't noticed any difference yet, good or bad. I am due to go back to see my gyny consultant after 3 months for another ultrasound and CA125 blood test and see what he says then.

Can i ask, if you extend and take for the 6 months, has your consultant said what will happen next as i have read that even if the pain goes away with the injections, once you stop having them the pain generally returns and they can only be taken for a max of 6 months?

Hope they work for you and you feel better soon

[SimLuc7302 in reply to sarahgregory]

Hi.

That is a good question and to be honest, not one I have thought too much about only because I am willing the Zoladex to work. However, I personally have been told that should the Zoladex not work, that I would be referred to a pain specialist clinic, so I would imagine that even if the Zoladex does work and I face future pain after completing the treatment that I would be referred to said clinic anyway.

It might be in your case that they can extend the treatment but that is a conversation for you and your specialist and there are certain factors they would have to take into account e.g. bone density etc. If not, then perhaps a pain specialist clinic is next on your list.

Thank you for your kind words.Take care... x

[sarahgregory in reply to SimLuc7302]

Thanks for your reply. Hope you get yourself sorted and can be pain free one way or another x

[caz_ruby]

Hi, i had my 6th injection on 18th Jan. It hasnt been easy and there has been times i wish i had never had them but then I remember the pain i was in before. The hot flushes have been horrible i suffered with sleepless nights for first two months and lots of night sweats. I got a headcold and deep voice after each injection. Its very hard to know whats been worse. I always had pain 24/7 but the hot flushes come and go so i think id have the injections again. on a plus side i have lost weight! Good luck any questions please ask.

[SimLuc7302 in reply to caz_ruby]

Hi.

Thank you for sharing this. That sounds good on the whole.

I too, am suffering with broken sleep but not due to hot flushes. I seem to get those coming in waves during the day.

Well if there is weight loss due to the treatment, then I welcome it entirely and wholeheartedly.

I still have pain but it might just be too early to know if it is going to work for me. My endometriosis specialist nurse told me that it could be a couple of months before I notice any real change or relief of symptoms. She was good actually and did not bruise me when injecting my stomach. (Others have in the past) She gave me an endometriosis diet to try also. I think I am going to give it a go but being someone who loves her bread and pasta, I think it could be a struggle initially as I need to find the so called substitutes.

Take care... x

[caz_ruby in reply to SimLuc7302]

Hello, it did take a couple of months for me to notice a difference and same days I do get a bit of breakthrough pain. I do think food and drink can pay a part I know a lot of sugar upsets me. Yes its strange with the injection some nurses i didnt even notice it had gone in and others it was quite painful and the bruising was huge. I have 3 different hot flushes and the worse I have to sit down as feel like i am going to pass out its horrible. I am not seeing my gyne until april so not sure whats going to happen next. Not looking forward to all the pain coming back. Hope you dont suffer to much with the flushes and it helps with the pain. Let me know how you get on

[SimLuc7302 in reply to caz_ruby]

I completely understand. While pain is experienced, accepted (unwillingly) and dealt with daily (so much so, it becomes the norm) despite so-called pain relief only being able to take the edge off, the fear of the 'real' unaided pain is something I can't even contemplate, so I am willing this to work!

Thank you, I will.

Got to dash - I need to collect my son from rugby camp!

Take care...x