Just made decision to have hysterectomy for endo and adenomyosis any advice or just you're experiences please ladies

I have just been diagnosed with endo and adeno. One of my ovaries is basically destroyed so I've decided to have everythingremoved but my good ovary. II'm in west Yorkshire and have been told it may be 2-3 months waiting list how long have you waited? Also I may have some endo on my bowel has anyone been through something similar and how does the bowel op compare any advice would be great thanks for listening .

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  • Hi sazzles25, I was due to have a total hysterectomy on 15th January 2014 due to stage 4 endo and adenomyosis, but when they had me in theatre it turned out to be more complicated and I ended up having a total hysterectomy, cervix, part bowel and part abdominal wall removed. I am 9 weeks post-op and I have to say that, although I am now in the menopause as I'm not taking HRT due to it feeding endo, I have only had 3 nights where I have been slightly warmer than usual (no other symptoms), I've not had to take any pain killers since 7 days after surgery either and you can hardly see the 10inch scar now as it is healing really well. The only downside I have had is the lack of energy, but I do have cfs/me and apparently it will take me a little longer to regain the energy. I was informed at the clinic on 11th November 2013 that my operation would be on 15th January 2014, so I guess that was just slightly over 2months of waiting, although it didn't seem that long. I hope everything goes well for you. Please keep in touch and let us know how you are getting on. xx

  • Hi, sorry to ask more questions but do you have children? I ask as this may be my only next step but I don't have children yet xxx

  • I'm moving to West Yorkshire in the summer and will most likely have to have my hysterectomy up there. I was so worried I'd have to wait months for my op as I waited 7 months down south for excision surgery after seeing the surgeon.

    Are you seeing an endo specialist for your op or an ordinary gynae??

    Make sure however is doing the op that they are going to excise any endo they find to rid you of all disease.

    Oh I don't have kids but I'm way too ill to even consider having them. Can't look after myself at the mo

    Also I'm a slave to my pill I missed 6 days on purpose at the start of this month and I've suffered terrible pain ever since.

  • Thanks for the replies ladies. I am very lucky to have 3 children I know so many women having been as lucky as me so that aspect is really no problem as far as the hysterectomy goes. My doctor is the lead gyno a my 3 nearest hospitals he has dealt with endo a lot and also has an oncology clinic. I have been told I'm looking at may or June for my op as he's popular which I still think is good. He has been very supportive and always ready to answer my questions. I have rung his secretary a few times and always have a quick responds. He even got her to ring me and fit me into his clinic the next day to give me my diagnosis. I feel very lucky as I know some doctors don't go that extra bit for you so I will stick with hun without doubt. He talked me through what he was planning to do and yes he is going to take all the endo and check my bowel .

  • Fordie 777 do you mind me asking if you had any bowel symptoms as my soccer thinks it may be a possibility for me. I have had lots of pain with bowel movements and constipation and diahareea. If there's any found on my bowel he said I will need another op where he will bring in a bowel specialist .

  • I suffered with a lot of bowel problems from 2009 and was diagnosed as having IBS. Some days I am ok, other days I am in the toilet every hour or so with sever cramping and sweats just a couple of minutes beforehand, so it's not much notice for me to get to the toilet, then I could have several days without going to the toilet and my stomach swells even more than usual. I was quite fortunate that there was a bowel specialist two theatres down from the theatre I was in and he came straight through to my operation and sorted things out, otherwise I was told I would have had to wait at least 6-8 months for bowel operation and it may have been likely that it had gotten worse by that stage resulting in me needing a bag for the rest of my life. Although it has been a traumatic time, and I've no way of having children of my own (they couldn't harvest any eggs), I am feeling really blessed at having the right surgeons at the right time to look after me. xx

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