Appointment with specialist changed :(

Just feeling a bit deflated. I had an ex. lap. in April, where they found LOTS of endo. My ovaries and tubes were stuck to my sides and my womb was really tilted as being pulled by it. The surgeon freed it all up and removed some endo but said he couldn't remove it all. The surgeon suggested I have a hysterectomy.

I had a follow up appointment with my original gynae. booked for 3 mths afterwards - which I've been waiting, and waiting for in July. He specialises in it so was looking forward to seeing him (he was telling me I'm not too old to have another baby and was encouraging it so quite different views to surgeon!!).

Anyways, since op in April - I'm still getting pains, pain during sex and have had another UTI (surgeon said he didn't think endo was causing these but I get them ALL the time).

So, hospital called me on Friday and they said my specialist wasn't with them at the moment and have moved my appointment to this Friday and with someone else, possibly my surgeon. Just really disappointed as been waiting so long and now it's changed :( Wish they'd given me the option to wait for him to come back from where ever he's gone

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  • Hi, that's annoying isn't it,

    First of all is it in a bsge specialist centre if not you need a refferal to one, you can get your consultant to refer you, look up a local one on the bsge list,

    A hysterectomy isn't a cure for endometreosis so unless your womb is damaged diseased I wouldn't go for that option especially as you want another child,

    A thorough excision job is what is required and the bsge centre consultant s are so much more experienced at complex endo. Xxx

  • Thanks. Someone on here checked my gynae. and said he was a bsge specialist, this is why I wanted to see him again :( I'm not sure about the surgeon. When the lady called to tell me my appointment had changed she firstly said "I'm really sorry but I have some bad news" she then went on to see the man I was seeing deals with pain and he's the "next best thing" I was hoping for the best though as it's taken over 22 years to get diagnosed.....

    I don't think I do want another baby, but don't want it to be final as my boyfriend wants a baby one day (I have a 3y/o but my boyfriend doesn't have any children). I may change my mind....but unlikely as I'm 37 now and I don't even live with my boyfriend yet :S

  • If you are happy to wait to see consultant can you not call them and say that you would rather wait to see him. It's up to you who you see not them.

  • I wish I'd said that, but it didn't seem like an option to wait. She kind of said "He's no longer with us, at the moment" Wondering if I go on Friday, and then ask?

  • It won't hurt to go and see what happens. But yeah I would ask what is going on and if he's coming back. If he is you can ask for appointment with him. Good luck Hun. Let us know what happens.

  • Thanks, will do. Yeah, I got the letter yesterday with their number on and did consider calling them but spoke to my sister and we decided that maybe I should still go and see what is said

  • You clearly have rectovaginal endo and that must be dealt with at a BSGE centre in accordance with the NHS contract for treatment of severe disease. Most centres have more than one accredited surgeon on the endo team but if they change you to someone else it must be with another of the named specialist gynae team and not the pain consultant. What will they know about surgery? But what you have said about the surgeon not being able to remove much of the endo and suggesting a hysterectomy is worrying as this implies they intend the hysterectomy as a 'treatment' for your endo in place of excision. Have you had an MRI to look for and locate any deep endo?

    Check the BSGE list below to see if your surgeon is named on it and whether there is more than one at the centre. If so then call the hospital and ask who you will be seen by if not your surgeon and if it is not another named surgeon at the centre tell them that you wish to be seen by a surgeon at the endo centre as required for severe disease.

    bsge.org.uk/centre/

  • Thanks for your reply :) How do I check please? I think I tried before but couldn't look as needed to be a member so someone else checked for me?

    I think it's pretty bad too, when I need to poop the pain is excruciating - to the point where I fall of the toilet. Some times it knocks me to the floor when I assume it's time of the month (don't get periods on my pill).

    This is why I'm worried about seeing this surgeon - I have checked and I am seeing the man who performed the surgery. Just worried me as the lady said he's the next best thing and does deal with pain.

    Since my op, I have had bad pains but had worse pains before - but that's just how it goes sometimes - so hard to say if it's helped. Pain during sex appears to be worse now as before it was now and then but the last two times I had to stop - without meaning to sound too crude, it's when deep :/ And I am convinced the UTIs must have something t do with endo?

  • Just read my notes and the reason for not removing it all says "not feasible to strip peritoneum today in view of adhesiolysis. Would need formal GnRH analogue down regulation and elective procedure in CWH" If anyone can translate that it to something simple for me to understand, then I would be very grateful thanks!

  • I'm not sure what you mean by seeing the one who did the surgery as that is the most important person so that is the person who must be accredited by the BSGE. Click on the link in my previous reply and scroll down until you come to your centre and then you will see the named gynaecologists. The one doing the surgery must be one of those named.

    In terms of the surgical notes I think it is saying that there were probably so many adhesions that there wouldn't have been time to address the endo. 'GnRH analogue down regulation' means giving you injections (probably 3 months) of such as zoladex or prostap to stop your oestrogen production to attempt to shrink the endo prior to excision. There are two schools of thought on this - some surgeons say it can then mask endo, others say it makes surgery less messy and easier. The official line based on research is that it makes no difference to surgical outcome. The only recommended circumstance that these meds are given is when there are endometriomas (ovarian endo cysts) which should be drained and stripped out followed by 3 months GnRHa prior to excision of the main endo.

    CWH sounds perhaps like the name of a hospital. Do you have a C? Womens Hospital nearby? That might mean that you need referral on? Can you send me a private message with the name of the hospital you were seen at and are going to on Friday with the name of your original gynae (who you wanted to see) and the one you are seeing who did your last surgery.

  • Hi Lindle, they've actually changed the website fairly recently. It appears you can find a centre but not the named consultant.

    My consultant is a council board member of the BSGE and I will be seeing him in August.

    I don't know how much influence he has but I am happy to ask him if he could see if they could change it so that we could access the names of consultants not just the centres.

  • Hi Jean - the same details still come up for me under the new site at the Endo centre link? Unless I'm getting a cached page but it is definitely different as the map wasn't there before.

    bsge.org.uk/centre/

  • Hi, yeah just tried it and it comes up . Didn't last time ,maybe there was a problem with it at the time.

  • I still can't find mine :(

  • Have pm you Hun.

  • Wow how sad, I dreamt about my appointment last night!! And he fobbed me off - hope it's not a sign :S

  • Okay so today is the day of my (moved forward and not with original specialist) appointment. Please wish me luck - hope I come out of there feeling like something's being done

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