Going for hysterectomy

Hi ladies,

Well I have reached a decision that I'm going to most likely have a hysterectomy. I'm 30 now and was diagnosed at 5 years ago (ish). I have always felt that my hormones have ruled my life.making me feel suicidal every 2 weeks out of the month with premenstrual dysphoric disorder. I have always felt like I'm trapped on a body and mind that doesn't suit me and only occasionally do I see a glimpse of the real me. That's the only way I can explain it to everyone. I've tried prostsap which seemed to help, but the main thing has always been the pain. I started on codeine about a year after diagnosis lap and endo being lasered. Now I'm up to 100mh mst and oramorph. I am a nurse and I've had to stop working for fear of error making and the serious consequences that could occur. I'm in bed because I'm tired either from the drugs or if I've had a busy day the day before.I've got a two year old son (not biological mine) and I'm missing out on him too. I am booked for lap in two weeks and strangely it's all just come to a head. They told me initially endo was on my right ovary. I'm now crippled over with severe pain on both. A horrid dull back ache and no period for four months. I look about 6 months pregnant with bloating. I don't know what's happening inside but I know I need my life back. If it is extensive on my ovaries then I just want them gone. I've always tried to take my time in making this decision as I have not carried a child myself, but the way I am, I would have trouble even trying! Im sorry if this seems all a bit random. I'm at my total whitts end. My mom had a hysterectomy at 30. She said it's the best thing she ever did. I've spent years ignoring that because I'm not her, but I feel like at this stage it's right for me too. I know it's notl a cure and it's also on my ureters, but that has never bothered me. It's just the ovary pain. Is there anyone out there who has had a hysterectomy and has benefitted from it and felt so much better?

Sending love to all xxx

3 Replies

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  • Hi - I'm not sure if you read the links in my reply about 3 weeks ago about rectovaginal endo and getting referral to a specialist centre. You have symptoms of severe endo with confirmation years ago that it is on your ureters. As your lap was many years ago it has likely progressed. As you say a hysterectomy and removal of your ovaries won't cure it so I'm not sure what has lead to the decision without wanting the endo dealt with. The NHS contract for severe endo requires that this must only be dealt with in a BSGE accredited centre and that all endo should be excised. The NHS protocol as per the EHSRE guidelines is that a hysterectomy/BSO should only considered as a last resort if all other treatments have failed and is likely to be ineffective with non-cyclic pain as that isn't caused by oestrogen. You will have to take oestrogen replacement at your age which may continue to feed active endo. Any surgeon carrying out a hysterectomy would be going against the NHS contract and both you and he/she must be aware that you are doing this. As you are a nurse I do recommend that you read all the guidelines as to how you should be treated. My endo only revealed itself 7 years after a TAH/BSO and grew under oestrogen replacement. I had stage 4 with bowel attached to pelvic wall, endo on both ureters, bladder and throughout peritoneum. There were no centres set up then and I had to scour the internet to try and find such a thing as an endo specialist as I knew I was at risk of renal failure from what I knew to be ureteral endo. I'm not sure why you aren't bothered about endo on your ureters as it can lead to kidney failure. Obviously the choice must be yours but you are in England and have all the means available now to get proper treatment so I do recommend that you use the process.

  • Thanks for your reply. Perhaps I've not written the sentence clearly . I was talking I'm terms of pain. The endo on my ureters has never bothered me-pain wise. Not in terms of having it or any of the endo I have. I did read some of the info and I found the name of a specialist local to me. In the meantime I'd received an appointment from the gynea consultant I had seen months before for two weeks time. The pain just happens to be totally overwhelming when this appointment came through. If I have severe endo on my ovaries then I feel like removal of them would solve this problem.not to say that I need to keep watch on it continuing to grow on my ureters etc but I cannot stand the ovarian pain. Would a specialist excise all of this rather instead? Should my usual consultant already be aware of the protocol in terms of her performing a total hysterectomy on me? Thankyou for your reply.

  • Hi - yes all gynaecologists are required by their registration with the GMC and RCOG to be aware of and follow all guidelines and protocols that affect the conditions they treat but sadly, it seems, rarely do. Every time someone fails in this duty they should be reported to these bodies as the problem just gets perpetuated when they just get away with it.

    The NICE guidelines say under secondary care:

    'Surgical treatments of excision or ablation of endometriosis deposits aim to remove or destroy disease to treat symptoms and in some cases, increase the chance of pregnancy. Treatments may be:

    Laparoscopic surgery (includes diathermy, laser ablation or excision of deposits, ovarian cystectomy) ideally done at the time of initial diagnostic laparoscopy.

    Radical surgery (such as total abdominal hysterectomy and salpingo-oophorectomy with removal of all visible endometriosis lesions) in women who have completed their families when other treatments have failed.

    cks.nice.org.uk/endometrios...

    As stated above a hysterectomy would only be considered as a last resort if all other treatments have failed (including prior excision) and all further endo must be excised at the time of the TAH/BSO. This is underpinned by the ESHRE guidelines that stress that there is no conclusive evidence as to the success of hysterectomy with endo. So any UK gynaecologist is bound by this.

    As far as the excision is concerned any stage 3/4 or rectovaginal endo must be dealt with in a specialist centre. This would include endo on the ureters but I guess you are going to have it in many places now and it it is likely to be complex. I certainly wouldn't want an unskilled gynaecologist going in to find out. The NHS contract confirms this:

    england.nhs.uk/wp-content/u...

    The GMC confirms the advanced training required to excise complex endo including on the ureters:

    gmc-uk.org/ATSM_Laparoscopi...

    Feel free to pm me if you need any help x

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