Discharged on zoladex

[mablesky]

Hello I have had severe endo metriosis and a few surgeries dont know if I still have it but stlii in pain even on Zoladex(although much better and haing some good days!!!)how ever

I need some help as to what to do now.I had a clinic appointment yesterday and saw some one new to me.The reason for the appointment was to see how Zoladex was going and to make a plan for future.

I was not asked howthings were going so I voluntered some imformation and said It was going ok but before I could go into any more detail He immedietly said "well we dont need to see you any more"I was gobsmacked and didnt know what to say .I did manage to say I have continueng pain on my left side that sometimes leaves me feeling exhausted and drained,he said lots of people have pain before a hospital appointment it was just nerves!!!by this time I couldnt speak I was dumb founded.

Zoladex is going quite well but I am still no where near being'fixed'I tend to get on with things by myself and very very rarely go to my GP with things if i did I would have moved in!!!he gave me no idea as to how long I will be on the implant and just dismmissed me .I've had really good treatment up until now I always felt I was listened to so this has knocked me.

Is it usual to be disharged when you still continue to have problems?What should I do?

any thoughts would be much appreciated.

Bxxxxxx

[Chrissie66]

Hi B

Blimey, consultants say the 'funniest' things - people have pain before hospital appointments because of nerves?? Wow, no wonder you were dumbfounded!!

Do you know why you saw somebody different this time? If the person you saw before is still working at your hospital, I'd be inclined to ask to be referred back to them to discuss it all properly. I am convinced that half of the battle with endo is having somebody in the medical profession who you know is on your side and batting for you. If you've had that up to now, to then experience this must have been horrible.

That being said though...the thing is with endo...and I know there are people on here who will disagree with me, so I'm only speaking from my point of view...I have stage 4 endo, which is involving all of my organs. The last time my gynae was 'in there' she couldn't find my right ovary. All of the surgeries I have had to have over the years to remove cysts and generally resolve acute situations have caused so much scar tissue that my gynae never wants to go in there again; if she does have to she will have to be assisted by bowel and genito urinary surgeons, and even then there is a high risk of perforation of those organs with all of the associated problems. Before my left ovary was removed it flared up with cysts on a regular basis; for that reason and that reason alone she keeps me 'on her books' so that I can be scanned every six months to ensure that my remaining ovary is staying quiet because as I said, we need to avoid surgery. The right ovary flared the year before last and we were able to kill the cyst off with Zoladex because we found it relatively quickly at one of the routine 6 month scans.

I have a fantastic gynae, but if I didn't have this flaring cyst problem, she'd have discharged me by now because there is nothing else she can do to help me. And I've seen the surgeon who is able to fix everybody, and he can't fix me either. My pain levels are constantly high and only controlled by pethidine and occasional doses of Zoladex to calm the endo flares down. I will never be 'fixed', so instead we are nursing it through to menopause this way. I'm not being a martyr; it's just that the endo is what it is and there's nothing that can be done about it so I have no alternative but to just get on with it.

But that's me - I'm on the home run towards menopause now so this won't be going on much longer. I completely understand that for younger women with years ahead of them or ladies who want children just getting on with it isn't an option.

As I said at the beginning of this essay (!) try and get an appointment with the consultant you have been seeing up until now, either by phoning their secretary at the hospital or via your GP. It may well be that there is nothing more they can do at this stage, and if you're not trying for children or in constant acute pain it is often best to leave things well alone but it would be nice to talk to somebody about what you need to do if things become totally unbearable again. And you need to get a pain plan sorted out for the meantime anyway.

Good luck, and lots of love

C xxx

[mablesky in reply to Chrissie66]

Thanks for this things clearer.having had time to digest a little I can proberbly see why they have dischrged me for now as surgery not an option for time being.I have emailed the secretary to see if i can have one more consultation just for clarification .then suppose just get on with it!!!!!all the very best to youxxxx

[Impatient]

Phone the gynae dept and ask them to look at your notes and tell you how long you have been put on zoladex for. Your GP might have been sent details too, so you could try your own medical files with the GP surgery.

If you had surgery right before zoladex, it could say on your hospital discharge form if you are to have zoladex and how long for.

Chrissie I'm not far behind you on the home run... I've begun to feel like I'm having ever so slight hot flushes of late (nothing like on the scale with zoladex)....oh i do hope that this is it. .. the natural shut down, not flu !

[Chrissie66 in reply to Impatient]

When I was 12, and everybody else in my class had started their periods except me, I was so upset that I had been 'left out'. I can still remember the utter jubilation that Friday morning (11th August 1978, to be exact) when it All Systems Were Go. My dad bought me a box of chocolates for Becoming A Woman! Ha!

Wind forward to now and I am hoping and praying that I'm not waiting as long for the menopause. My mum was 53 and I am only 46 but my gynae and blood tests say I am definitely on the way. My dad is only 74 so hopefully there will be another box of chocolates on the way, too! (that sounds awful, obviously I don't mean only for the chocolates!! )

Blimey. Talk about be careful what you wish for. My niece is 11 and things are starting to sprout...poor little thing, I wouldn't want to be starting all over again for the world