worried! Probs with norethisterone, too stressed to see GP!

Hiya
Would appreciate any advice, in all honesty I have had enough of medical examinations and have been putting up with this for a while.

I was diagnosed with endometrial hyperplasia (the precancerous type)
My surgeon put me on 30mg Norethisterone a day to see if it would make any changes, I took it for 2.5 months then went back for a biopsy, the results showed it hadn't made any difference, so he asked me to try it for another 3 months. (I'm 34)
During this time I've suffered excessive sweating. put on 2 stone, am covered in acne all over my back and face and every now and then have had unbearable pain that lasts 5-6 hours that my GP thinks are cysts bursting due to the excessive hormone dose.
Now and then I had slight spotting after sex, but nothing too worrying.
I went back to my surgeon after the 3 months 16th March this year, and it still hasn't made any difference so he has put me down for an "urgent" hysterectomy. He's told me the waiting list is so long it could be 3-5 months!
In the meantime, he's told me to drop the dose of the norethisterone to 10 mg a day.
Within 2 days of changing the dose I started to suffer pain so bad I swear I never felt anything like it since I was in labour!
following that I started to pass lumps, nothing like clotting during a period, more like passing membrane like stuff with a bit of bleeding, whenever the pain stopped after an hour or two, the bleeding and lumps stopped too, so I started to think it was just a side effect and would pass within days.
As soon as the pain starts again, I go to the loo to find I have passed more lumps with a little blood, but within hours the pain stops and I start to believe that's the end of it again.
However weeks on it's the same. The lumps are smaller now, but the pains still come and go with the occassional bleed and whatever else it is coming out of me!
I really can't face another examination, I'm really starting to feel down about it, just when I start to think it's all over, back it comes!
A day and a half is the longest time that has passed with out any problems, but it's still happening now.
I phoned NHS direct for advice, they were useless, the amount of times he asked if I was pregnant was ridiculous!
There is NO chance of that, for one hubby had a vasectomy and another, I've hardly felt sexy and when I do, you can be **** sure the bleeding starts again before I get a chance!!



Today things are not too bad, I have a greyish brown discharge whenever there is a lump of whatever but no real bleeding. The pain is still there, driving me crazy.
The bits that I'm passing seem to be getting smaller, at first they were worryingly large, now they are tiny
Has this happened to anyone else? is it normal on these pills and should I take hubby's advice and get back to my GP?
I'm sick of it and really can't face more poking and prodding, I keep thinking, not long now and it'll all be over, but the wait is dragging and in all honesty I'm scared.

I'm a busy Mum and try to be jolly all day and act like I'm fine, but by the time I've got the kids off to bed I just feel like curling up with a heatpack and crying.

Is there anyone out there with a similar problem?

I'm worn out and fed up


Thanks

Hi Delphinus

Goodness! You poor thing it sounds like you are having such a miserable time. It is not uncommon for progesterones to cause this type of problem in some women. You need to let them know how you are suffering so they can figure out another way to help you - hopefully they can do that without you having to be seen again.

Sorry I don't know much about the Health System in the UK. If speaking to your GYN isn't possible, could the nurse relay a message to the physician that you are unable to tolerate even the reduced dose of norethisterone and ask what the GYN wants you to do instead?

Sending s & hoping you'll feel better soon.
Beth

Thanks Beth,
It's driving me crackers!
I tried phoning my surgeon, he's on holiday at the moment, just my luck LOL
I did see my GP at first but her attitude was You're being treated by a specialist, he's giving you treatment that will sort it out!
Then to be on the safe side she wanted to take swabs to check for infections.
That's why I just can't face going back, today has been a good day, so far, nothing apart from the usual pain, so yet again I am crossing my fingers and hoping that's it........

I've had enough, I just want to hide from the medical world until my OP date comes up, yet I know that's the wrong thing to do.

When I first got my biopsy results, the surgeon left the room to get some notes and my hubby said "What do you want to do?"

I said "RUN"
that's pretty much how I feel now, I guess I should give myself a kick up the backside and drag myself back down there.



Thanks again

Donna

when you started norethisterone did you have pain really bad in the pubic area of your pelvis?

this is what i am getting now...i havent had this particular pain before this drug..

its constant and is driving me CRAZY i spent the best part of yesterday moving from room to room and chair to chair, standing sitting laying but could not get comfy enough to settle at all..is this at all similar to your reaction to norethisterone

im not sure if i can take much more of this...oh by the way we share the same first name which is not that common in the uk

sorry very irrelevant but it always amuses me to see another Donna