Endometriosis is making my GF's life a misery, please help

[Hayley1]

Don't be afraid Beth, but do be aware that there is no cure-all. Even a full Hysterectomy isn't 100% because if there is the tiniest cell left behind, it will re-grow in other areas.

 

I've had it for some 9 years, and my consultant still won't give me a hyst...but I do have morphine at home now for the more painful months. (I had previously spent three nights each month in hospital, for oooh many months, hooked up to morphine)

 

I did have a little more joy though with the Mirena coil, despite the increase in migraines - easier than the endo/adhesions pain by far. But you need to have had the endo removed first for it to be effective. It works by slowing the cells re-growth.

 

To the OP, keep pushing. Change Dr if needs be. But be aware that to have a diagnosis, an operation is necessary. It's nothing too major, but while inside they may be able to remove some of it.

My hat goes off to you. I wouldn't have managed it all without my hubby's patience.

 

Going back to the mirena coil, I had tried literally everthing going, and I really didn't have any faith at all in it, especially because of my hormonal induced migraines. If it worked, my consultant promised me up to 3 years 'normal' cycles.

 

For the first year, I was like a completely new person. I no longer had crippling pains when I ovulated, and during my period I could actually get out of bed and function as a normal person. Bleeding is lighter (in some people it stops completely)

 

Coming to the end of my second year now, and the pains are slowly returning. BUT for having just that 12-18 months of relief was totally worth it.

I should now only have to have the op to remove the endo/adhesions every 2-3 years instead of annually, which is brilliant!

 

Good Luck!

[Dear Forum...]

Thanks for the support guys. To be honest nobody knows what we go through with this. Nobody even knows what is usually!

 

We didnt talk for weeks initially after her op. She has very extensive scarring and has been told she is extremely unlikely ever to conceive a child and that they will try various things before the final solution.

After she had the op and she was told she had it extensively she just would come home, drink herself semi conscious in the bath then go to bed. She wouldnt speak to me even! Things have gotten better but she mentally is scarred as she feels that the bleeding and the slim chance of conceiving make her useless as a woman, which is understandable but isnt a scrap true.

 

Things are hard as our life isnt normal - our physical relationship is seriously affected as well as just day to day, she is often too ill to go out for a meal or a drink etc. And what really gets me is the help doesnt seem to be there. Genuinely the surgery just bung her off on a nurse thinking its a little girl with a contraception problem (this may be the receptionists not sure how it works?).

I cant understand why since the op in March she hasnt seen nor been invited to see anyone at the hospital nor why when the two pills the nurse has tried have failed a GP hasnt been consulted nor a hospital referral been made. When she has booked in for allergies, migraine etc like I said they have been treated individually but despite our assertion that she is ill at least two days of each week (like in bed - in pain with her stomach and also fluey/headachey etc) we are assured nothing is wrong despite no tests being done.

Im at my wits end with it now. Can we just book her into my doctors (naughty I know but I never changed mine from my parents locality as they are good). I mean can I just say she wants to come to you or what? Changing the doctor is the way I think I'd like to go, completely I mean even the surgery.

We are thinking of jacking the pills in she is taking and trying to conceive. Its unlikely to happen but it seems to be going the way of an over zealous vacuuming at the minute and we have nothing to lose - the pill does nothing. If we manage we get a kid which we both want, she'll be fixed and its all good and if not hey ho, the pill does nothing, she's baren at present and at least we tried before they sorted her properly. I dunno! Thanks for reading and your comments guys....

[Tripitaka]

My partner had Endometriosis and had the surgery to cauterize it but it didn't work great. She too was told it would be very very hard for her to conceive - near impossible, especially as she had had an ectopic pregnancy previously and lost a fallopian tube. However, we now have two little lovely boys both conceived after the Endometriosis surgery.

 

Joyful as it was having two healthy kids, it also drastically improved her Endometriosis symptoms to a near unnoticeable extent (she tells me - and I believe her, as she doesn't writhe around the floor in agony any more).

 

So chin up both of you - its not all doom and gloom!!

 

We had a Consultant called Mr Kim (I think that is his name) at Thornbury who was incredibly helpful throught the trials and tribulations.

[Hayley1]

when changing your GP, you will need a form of photo ID, a utility bill with her name and address on it, and she will have to fill out a form to change GP's and get her notes transferred. Most GP's will then have her in to see nurse to have a medical. It's very easy really.