Made the call to have a full hysterectomy - advice

So after a month of deliberating and being an emotional wreck due to frustrations (ran out of all other options) I have this morning picked up the phone and made the call to my gynaecologist to get myself on the wait list for a full hysterectomy including my ovaries being removed as endo attached to them. I've also asked that the consultant do his best to remove any other endo he finds whilst I'm under but am aware that some may not be able to be operated on due to their position. Bit scared but in the lead up to this I'm looking for pre and post hysterectomy advice. It's being done by laparoscopy and found that peppermint oil capsules helped enormously with the trapped wind but any other advice pre and post hysterectomy would be gratefully received. Thanks in advance.

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  • Is this being done at a bsge centre? If you have severe endo please don't have this done by a general gynae. I am 7 weeks post hyst + BSO + excision and so far so good. The first month was rough and more difficult than I had thought it would be (even if you've had a lap before, this surgery is a whole different ball game) but things started to improve around 5/6 weeks post op. If you have any specific questions I will try to answer them but I cannot stress enough not to have this done unless you are 100% sure the surgeon is capable of it - if there is any suggestion at all that some of the endo might be too difficult to remove and will be left behind, please get a second opinion before you go ahead, even if it means waiting a bit longer.

  • Thanks for your reply. No it's at a NHS hospital. Are the BSGE centres private? I can't afford to go private. Got lots of other questions but will respond more later - thanks again.

  • No, they are mostly NHS - the list is here: bsge.org.uk/centre/

  • Ok thanks - need to check out those in the Midlands. Will have to make some calls as not sure how to find out otherwise!

  • out of interest did you go to a BSGE to begin with or did you end up asking to be referred to one.....I don't know the process you see as I'm currently under care of an NHS consultant. Do I call my consultant and ask to be referred to an BSGE endo centre in the midlands who take NHS referrals?

  • I was referred by the consultant who carried out my first lap. You can also be referred by your GP.

    If you have a look here it gives you some idea of how severe endo is supposed to be treated on the NHS

    england.nhs.uk/commissionin...

    Unfortunately in my experience not all GPs or consultants are fully aware of the specialist centres or the need to refer so you may meet some resistance when you ask about them but please don't let this put you off.

  • Thanks for your help with this. I have just left a message for my consultant's secretary to speak with him as I'm wanting a referral to a BSGE accredited centre in Birmingham. Will keep you posted x

  • Hi there, just a quick note to say thanks for your help. I contacted my NHS consultant yesterday to request a referral to a BSGE near me, so just waiting for things to start the ball rolling x

  • I am in my hospital bed now having had a total hysterectomy and removal of endo yesterday. They had to take one ovary but have one left. I don't know much as briefly spoke to the doctor last night but she said it was a bit of a mess in there, more adensions than expected hence the ovary removal. Mine was done at endo centre in an nhs hospital and my surgeon is head of the unit so I felt in good hands! Only pain I have at the mo is shoulder pain from the gas so got mint humbugs and windeze on the go! I don't have much pre op advise though really as this was a cancellation appointment and I only found out a week before surgery! Main things I did were practical organisation things... Clean house, sort out stash of meals for when I am home, sort out child care etc. Time will tell if it's the right thing but needed to do something as I had adenomyosis, fibroids and endo and it was progressively getting worse each month. Best of luck with what ever you decide xxx

  • Thanks. I've asked the consultant to take both ovaries out as they have endo attached to them. I'm curious to know whereabouts in the UK you are. I'm in Rugby so looking at midlands BSGE centres and need to know the process as currently under care of an NHS consultant *with no endo centre here.

    Hope you're going to be taking it very easy for the time being. I have adenomyosis and endo. Big hugs xx

  • Hi I had a full hysterectomy with ovaries etc removed in Jan 2016. It was a hard decision but I feel I made the best decision for myself at the time. You need to go with how you feel. The only thing I would say is to ask for counselling before just to make sure you are 100% as I was not offered it at the time and now I struggle a wee bit with how things have went and my emotions etc xx

  • Thanks Harley. I struggled emotionally for the month in between having my last consultant appointment and today but I'm in a much better place now however that'd very good to know. Hope you're taking it steady xx

  • Hope all goes well for you.

    I'm waiting on my date for everything removed by open surgery. I'm now in pain all the time, some days is so bad I've had to get oral morphine from the doctor. I have no free movement inside now, everything is attached overies etc including my bowel. I'm scared of the op, due to the risks, but anything is worth a chance to get some relief from pain and get back to a normal life .

  • Thanks. I'm trying to jump ahead of my body as not long come off prostrap and don't want to be in agony any longer than I need to hence the call to the hospital to get on the wait list x

  • I am making some calls this week to see if I can get a referral to a BSGE accredited endo centre instead of the consultant I'm using as they'd be more specialist at the surgery.

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