Disheartened and confused - hysterectomy-losing sleep

[Bexstar74]

So I'm out of treatment options and decided to get myself on the wait list two weeks ago for the full hysteratomy. After taking advice from someone here i then asked my consultant to refer to me for the surgery to a local BSGE accredited centre. I got this letter yesterday and I'm not only angry but also confused about what to do. I either go to my doctor and ask for the referral to the BSGE centre, have to take even more time off work and end up losing money I can't afford to lose OR I let my current consultant do the surgery at my local hospital. I'm fuming because he never said to me what he'd said in this letter. Absolute tosh. I'm worried because my last experience at my local hospital wasn't a good one but that was with a different consultant.

I'm incredibly confused and unsure what to do.

What would you do in my position? I'm losing sleep over making the decision on where to go and it's stressing me out. Tried to talk to my husband about it and I'm going round in circles.

[Hidden]

If your Endo isn't severe, have they said why a hyst + bso is necessary? Seems like over kill if you only have mild disease.

[Bexstar74 in reply to Hidden]

Because I'm out of other options sadly. No other treatment plan has worked other than prostrap.

[Hidden in reply to Bexstar74]

have they properly excised all the endo? I'm fairly sure you can be referred to a specialist centre on the grounds that other treatments have failed. It seems odd to say you need drastic, life changing surgery but at the same time that things aren't bad enough to warrant a second opinion from a specialist.

[Bexstar74 in reply to Hidden]

I have absolutely no idea. I'm 43 and won't be having any more children. I've been on prostap for 18m so kinda used to the symptoms of menopause to be honest. Im happy to proceed with the full H.

[Bexstar74 in reply to Bexstar74]

As you can imagine I'm very confused though.

[Hidden in reply to Bexstar74]

He has given you the option to be referred to a specialist centre and basically said it's up to you. I know what I would do in your position because I have had this surgery and I don't think it's something you should agree to unless you completely understand what it's for and what it means for you, health wise. If you have your ovaries removed you will need long term HRT and if the endo isn't properly excised at the same time it could come back. That said, this is at the end of the day your decision and only you know what is the right thing to do for you.

[Bexstar74 in reply to Hidden]

I understand what its for. I know what it means for me health wise. What I don't understand however is why I'm currently going round in circles trying to get further information from my consultant and GP. I'm convinced now that they either didn't nuke the endo properly or that it's grown since again, or that's its microscopic endo which is causing so much pain. I'm fed up with the lack of care shown to me by medical professionals. You're clearly very lucky in how much information you have been given from the outset.

[Hidden in reply to Bexstar74]

When you say nuke, do you mean ablation treatment? That's not a permanent fix for endo. It needs to be cut out (excised).

If you are having problems with the hospital the best thing to do is contact PALS and let them deal with it. I have always found this gets a pretty speedy response. There should be a number on your hospital's website. I would also go and see the GP rather than just ringing them.

I wish I had been given good information from the outset, but quite frankly this was not the case. Getting the right treatment was not easy and I was initially offered a hyst by a general gynae who told me it was fine to just leave all the disease growing on my bowel. He also missed that I had adenomyosis and bladder endo. It took 5 months for him to refer me on to a specialist centre and even then he made it seem like it wasn't really necessary. I've dealt with useless GP's, useless A&E docs. A lot of the information I've been given has come about because I have questioned absolutely everything - what are they going to do, why are they doing it, what happens if they don't do it. I was fortunate that when I was finally referred to a specialist centre the surgeon that did my main surgery was fantastic but it was not straightforward to get to that point.

[Bexstar74 in reply to Hidden]

I have not had any joy getting hold of my consultant or his secretary despite leaving numerous messages for her to call me back. I complained to PALS and just had a response to say that there's a letter on it's way to me, hopefully that'll contain the information about where my endo was found and what they did during my lap surgery. In the meantime I have decided that I deserve better treatment so have contacted my GP to go ahead with the referral to the BSGE centre, if nothing else to get a second opinion and take it from there.

[Hidden]

My advice would be to go to the BSGE centre if you can xxx

[Private70]

It's a temporary relief endo may return again

[Bexstar74]

Getting incredibly frustrated as still can't decide what to do for the best. I've requested further info from my consultant as to where endo was found etc and despite numerous calls to his idiotic secretary she's just not calling me back. I have also requested the same info now from my GP and my calls there have also gone unreturned. I'm just going round in circles at present.