Total Hysterectomy and HRT

[bettybowen]

Hiya,

Just looking for a bit of advice.. I've been on the waiting list for a total pelvic clearance since September and managed to get an appointment with my consultant today as I needed something to help with the pain.

I wasn't sure about the hysterectomy as I'm only 33 and a diabetic. I started on Prostap in September and had my last one in December. I had been taking Tibolone and it made my blood sugar levels so erratic and I felt worried and on edge all the time. I stopped the Tibolone in December and felt much better.

I saw a private gynae in London and he believes that the pain is due to endo in my nerves. He recommended going to see another endo specialist in London that deals with nerves. This would cost £495 and then I could ask for my care in Wales to be transferred to London which I could then have a specialist MRI scan and nerve blocks. Getting to London several times a year is a bit awkward and paying for the initial.consultation is a problem too. The private consultant did say that if I went ahead with the hysterectomy I should ask to keep one ovary to prevent going into the menopause.

At todays appointment I questioned the fact that a hysterectomy is only meant to help if you have Adenomyosis. She said that wasn't true and if the womb is removed the lining can no longer spread and cause endo. She spoke to the consultants and they said they want to remove both ovaries as it will stop the risk of recurrence and then if they have to remove the ovary that's been left it will be too complicated and I will have too many adhesions. They said I can try different HRT if the Tibolone didn't agree with me. For pain relief they said to go on the Prostap again until my op in June time and stay off the HRT.

I just don't know what to do. I don't want any more children but being on HRT was awful and I don't want this done without a good sureity it will work.

Sorry for the essay!

Thanks,

Beth x

[Marcia71]

Different hrts work differently for different. People. I didn't get on with tibolone but now on Kliovance and doing well.

You are getting wrong messages on hyster and endo and you need an expert. Of course a hysterectomy helps adenomyosis and womb lining stops growing but if you already have endo that can keep growing and feeding itself without the uterus and with or without ovaries.

I had a hyster in Feb 2015 and ovaries out and pain was worst until I had excision and adhesions removed two weeks ago. So please do make sure you have a bsge surgeon. Ideally at a bsge clinic.

Best of luck.

[bettybowen in reply to Marcia71]

Hi,

Thanks for the reply...the doctors are based in a Bsge centre. I had a 4.5 hour excision surgery in October 15 and had practically no relief. The only alternative offered by them was total pelvic clearance. As I was asking questions yesterday they then said well if you're not sure about having it take your name off the list...but where does that leave me? Just to stay on prostap and hrt anyway...

They said they will excise any endo they find during the op but if it was all taken away in 2015 I don't see how a hysterectomy will help and then think that it may have spread to my nerves....

Thanks,

Beth

[Marcia71 in reply to bettybowen]

Poor you. If they take your ovaries and excise all endo during hysterectomy my understanding is that it then won't come back. I've not heard it affecting nerves before so could be different.

Find Lindles posts on here as she is very knowledgeable and may offer more help.

Good luck.

[bettybowen in reply to Marcia71]

Hey thanks again for replying... I'll have a look at Lindles posts and see if I can find any more out...

If it was more or less guaranteed that my pain would go after it I would feel happier and could try and find the right HRT.

Thanks,

Beth x