Rectovaginal nodule

Hi everyone, had anyone decided against surgery for a rectovaginal nodule? My doctor strongly advised me to have the surgery as I have severe endo, adenomyosis plus a rectovaginal nodule. I'm absolutely petrified at the thought of having major surgery. I've left this for so long now. I'm trying to conceive, had a HSG and tubes are clear. The pain is getting worse but the thought of a colostomy bag really frightens me. Any advice appreciated x

12 Replies

  • Hi

    You don't really have much choice. A rectovaginal nodule is likely to become infiltrating if left and is more likely to result in a colostomy bag in the long run that having surgery to remove it. Please have a look at the posts I've put on (click on my name). The specialists on the BSGE website only get on the list of accredited surgeons by proving their expertise in operating on rectovaginal endo, the exact sort you have. They do it day in day out. So the most important thing for you is to ensure your GP refers you to one of those, even if you have to travel. A general gynaecologist should never touch rectovaginal endo. x

  • Hi, I also have rectoviginal endo and adenmyosis the endo is everywhere and stage4 I really feel for you the pain is constant and excruciating not to mention all the other awful symptoms. I'm awaiting major surgery with endo specialist. I wish I could find pain relief that actually works take care xx

  • Hi. Please dont be scared of the bag. After 6 months I have just had mine reversed. I am currently sitting in the ward recovering from the operation. You get used to it believe me and I have had no endo symptoms since my op last september. Yes surgery is scary but they do it to help make you better and if you do have a bag, the stoma nurses are some of the most dedicated people I have ever come across. X

  • Denise definitely have the surgery! I know it scary but like Lindle said you really don't have much choice. If you leave it, it will ot get worse which will result in more pain and a more complex surgery. You'll likely to find it very difficulty to conceive with severe endo. There's been lots and lots of research stating women successful Concieve after having surgery to remove severe endo. Surgery to remove endo is often a treatment for infertility.

    I do know exactly how you feel. I too have rectovaginal nodule, very large cysts on ovaries, endo on ligaments and bladder. I was told that I would most likely need a temporary colostomy and this was horrified me. I knew though if I did not go ahead with surgery this would only get worse with time and could possibly result in a permanent colostomy if the endo destroyed anymore of my bowel. I had my first surgery in 2011and luckily I didn't need a colostomy, my consultant was able shave the endo off the bowel and it was well for a year or so.

    One thing I would say is even after the endo had been removed I still experienced pain, no where as much as I did pre surgery but I was suprised not to be pain free. My consultant advised the pain I was continuing to experience was nerve pain which was due to the damage the endo had caused.

    Go ahead with the surgery Denise, it will really help. Good luck xx

  • Thank you Eliza. It's reassuring to know that you didn't need to have a bag, perhaps they're giving me the worst case scenario. Hopefully I'll know more after the MRI scan. Take care xx

  • Also please check out Lindle's page for posts, she has done a lot of work to raise awareness of endo and is incredibly knowledgable. Her advice on specialist endo treatment is invaluable. X

  • Thank you so much x

  • Hi again

    With reference to the reply relating to a colostomy bag, have you actually had imaging confirm that your nodule is infiltrating and that a bowel resection will be necessary? Obviously I don't know the details of your actual case but this would be relatively rare. I assumed you were worried that the op might go wrong and your bowel might be damaged, which would be very rare in the right hands too. A rectovaginal nodule will most usually be located between the vagina and the bowel but attached only with adhesions and can usually be removed to leave organs in tact, but if you do know it's already infiltrated your bowel then you definitely need surgery either way. Your GP can confirm this from the radiologist's report.

  • Hi girls, thank you for your responses & advice. Lindle, I've only had transvaginal scans done, the last one was on Monday when the doctor actually thought I was pregnant as she could see a sac in my uterus. I had a beta HCG to check if I was pregnant and had miscarried, Beta HCG was negative. Had another scan which was inconclusive but said likely scarring due to endometriosis. I have had numerous scans done, 2 at a specialist endometriosis centre which confirmed severe adhesions in the pouch of Douglas and a 15mm rectovaginal nodule. The consultant advised that this would have to be removed in conjunction with a colorectal surgeon. he said it was likely that I'd need a stomach bag which would hopefully be reversed. He didn't say it had infiltrated my bowel, fingers crossed it hadn't. Would that show on an MRI scan? I'm due to have one soon. Xx

  • Sorry that should say stoma bag x

  • Hi - I don't think I can add anything to Eliza's post as she has been in the situation so knows first hand. I was going to say the same in that an MRI should show if the bowel has been distorted by the endo as opposed to showing the endo itself as such. The colonoscopy would definitely be a good idea to show what the inside is like. x

  • Hi Denise,

    Yes the MRI might show whether the nodule has penetrated the bowel wall but it's not always conclusive. My MRI at the time wasn't clear because the nodule was large and left ovary was glued to the nodule between the pouch of Douglas too. I had a colonscopy which was the only sure way to identify whether it had done through, my colonscopy showed my bowel wall had thickened when the nodule was on the other side but the nodule hadn't come through. My bowel had become indented from the large nodule against it (I still have the indention of where the nodule had been, 4 years later!)

    The general rule of thumb is if the nodule had penetrated through the bowel wall, you'd need a stoma but if not, they can shave it off in most cases. They definitely always tell you the worse case scenario to prepare you. I was told it was pretty much 95% I would need a stoma so was relieved to wake up without one.

    I think you should ask to have a colonscopy done, they did mine under general anastestic because they said it would be very painful without so I wasn't aware of any of it! That way you'll know more about the likelihood of you neeeding one.

    It must be such a difficult time for you, I remember it was an awful time in my life and I was only 24 at the time. Although my endo has come back, and I have had (and need again) surgery, it has never come back to that stage and I don't have the daily agony anymore that I did then!

    I'm really sorry to hear you had miscarried. It's always a difficult thing to go through. Big hugs xx

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