Hysterectomy option

Hi Ladies,

I am new to this site but you all seem a friendly bunch! I have had Endo for the last 20 years and had, to date, 17 operations, 16 laparoscopys and 1 laparotomy. I have also had numerous courses of Zolodex. Last op was July 2011 and I had been symptom free until November 2015. Since then I have had a very bad flare up and have visited GP. They have recommended with my history I now consider a hysterectomy. I would like to ask what others views are on this? I don't have children but was told after having cervical cancer at an early age and with endo, I would struggle to conceive so my husband and I are happy as we are without children and I have adjusted my life to have a very good career. I am 38. Any thoughts appreciated. Thanks in advance xx

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  • Hi,

    I'm 39 and had a hysterectomy 4 weeks ago. It is amazing to me that these four weeks marks the longest amount of time I've gone without agonizing pain in 25 years!!! It's gone. The pain and bloating and constant bleeding is all gone.

    I can't phathom going through as many surgeries as you have but maybe this could be your last one ever.

  • Hi. I had my hysterectomy a month today. Unfortunately I'm not able to comment on pain levels as I had rare complications and required major emergency surgery.

    However I made my decision on the advice of many others who'd experienced the same issues and do believe it was the right things to do. I have no children and had the most severe endo my specialist had ever seen.

    It's a huge decision, I hope you're able to make a decision that's right for you.

    Good luck x

  • See to it that your GP refer you to a specialist BSGE centre as the team there there are the specialist in this area . They will be able to advice and assess you properly about your condition and see from there.

    There's no denying with all the treatment we receive past and present for our endometriosis the eventuality outcome is hysterectomy.Should this be the choice for you make sure go for a complete hysterectomy ( womb ,ovary and cervix ) as leaving any one of them will give you a problem later on.

    Hope everything turns out well for you .Be brave , take hold and control of your life . Remember we are a survivor and we will keep on surviving dear.

    Kind Regards,

    Arlene48

  • As Arlene says get to a bsge centre for advice but I agree they'll probably recommend total hysterectomy and may even take one or both ovaries but they must excise all endo at the same time else it will carry on growing causing problems. They'll also do it laparoscopically if at all possible as best option to ensure less adhesions

    I speak from bitter experience having had a total abdominal hysterectomy and BSO with general gynae and they left endo behind as thought it would die off!! And I've endured two years of the worst pain whilst I sought out a bsge surgeon who believed me and I'm now on her list for surgery to excise endo and have adhesions removed too.

    Good luck

  • I am due to have this surgery in 10 weeks - I'm having a laparascopic hyst +BSO with excision of endo from my bowel and bladder.

    TBH I don't think this is a decision your GP can make - it's something you need to decide with a specialist (preferably at bsge endo specialist as others have mentioned) as there are very specific reasons for carrying out a hyst and there may be some cases where it's not appropriate.

    I'm having the hyst because I have adenomyosis as well as the endo, so the hyst is basically to treat that. I then need to have my tubes out because I have hydrosalpinx so they're ruined anyway, and the BSGE consultant has advised that removing my ovaries as well will drastically reduce the likelihood of needing more surgeries, something that is a concern because of the amount of endo I have growing on my bowel. They've said it's around a 10% chance that I will need a bowel resection and stoma, but they won't know until they start if that's going to be necessary. I may also need a bladder resection, but again they won't know until they do the op. Sadly a hysterectomy for endo is not a routine hysterectomy and can be quite complicated and risky.

    I've decided to have the surgery now because I'm at the point where my other option is basically to carry on as I am, cycling through endless drugs that don't work, having minor surgeries that don't help, and hoping that the bowel disease doesn't get any worse. I have children and our family was most definitely finished, so that's not a concern. I'm just so tired of it all, and being so ill with endo has really shrunk my world down to this tiny place where I take the kids to school and struggle at my job and don't really do anything else. My whole life revolves around bleeding and pain and anxiety and this surgery is my best chance of feeling well.

    I'm 39 so I will have to take HRT until I'm 50.

  • Please let us know how you get on Jo. My diagnosis is the same as yours (adenemyosis / bowel etc) following MRI scan it showed that after 20 yrs of endometriosis it's progressed to adenemyosis. They recommend a complete pelvic evacuation (risk of colostomy bag). I am 43. I asked if I could have an appointment with the specialist bgse surgeon (Mr Afifi) to discuss it further (just waiting for that appointment at the moment). I just want to ask him what the implications are if I don't have the surgery- what is the worst case scenario with the bowel and other organs. I.e. Can the endometriosis cause any severe damage to bowel etc.? I'm so confused and don't want a colostomy bag. Not sure what to do! So many questions. Best of luck to you - hope all goes well.

  • Hi. I am waiting for a date for a hysterectomy following years of pain, laparocopies and cycles of hormone treatment which made me anxious and depressed and ill. I had my ovaries removed last year but that only made it worse due to progesterone Intolerance. Where possible I would keep your ovaries unless you have never had any issues with the pill etc. Am hoping the hysterectomy will solve everything as am sure I still have endometriosis.... Monthly pain etc etc. At the end of the day if you have tried everything else, go for it. Good luck!

  • You are likely to have a very complex situation inside your pelvis with so many previous operations, involving not only endo but scar tissue. As has been said you need referral to a specialist centre. I have a closed FB group if you wish to join so we can guide you to proper care.

    facebook.com/groups/1148144...

  • Hi, I had a hysterectomy last February 2016. They removed my womb, 1 ovary and both of my Fallopian tubes as both were blocked and full of infection.

    The reason for leaving one ovary was because after having such a traumatic operation I didn't then want to go straight into the menopause, so by leaving an ovary it means I carry on as normal until I start my menopause naturally.

    My surgeon was aiming to carry out my operation laparoscopically, but when they looked inside my womb was so swollen with infection they couldn't get it out, so I am now sporting a nice 12" scar from one side of my tummy to the other!!...

    I can honestly say, from that day to now I have had no more pain, or bleeding and best of all no pain when making love. I used to bleed 24/7 365 days a year, nothing stopped it, I've had all the operations and medications but nothing would stop the bleeding which in turn made me anaemic, depressed and I lost all my confidence as I was scared to go out because of flooding!!...

    My husband has been my absolute rock throughout. I am 41 and also have no children. This has been very hard for me as children were all I had ever wanted, but our happiness and quality of life was more important.

    I am a totally different person since the operation, I am me again and happy and bubbly as I always used to be before this condition took hold of my life!!

    The BEST decision I have ever made was to have a hysterectomy!!

    Take care.

    Kelly xx

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