Rectovaginal nodule

[DeniseG]

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

[victoria044]

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

[sianykins]

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

[EK20 in reply to sianykins]

Hi there I know it's been a long time since you had surgery but wanted to know how it went as I might be having this soon.

Thanks

Emma

[sianykins in reply to EK20]

Hello. All my surgeries went well and im still free of the endo symptoms that i once had.

I have had 2 rounds of ivf that were unsuccessful. This has been the worst part of the journey for me.

We are now looking at different ways of starting a family as the toll it takes is too much for me.

Some days i joke that i miss having the stoma. I never found that it stopped me from doing anything. You quickly learn to deal with it and the support available is amazing.

I hope everything works out for you xx

[EK20 in reply to sianykins]

Thanks so much Sianykins that's really helpful I will be doing IVF after the surgery too. I hope everything works out for you too. If you ever need to talk I'm happy to message/chat xx

[ElizaEliza]

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

[DeniseG in reply to ElizaEliza]

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

[ElizaEliza]

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

[DeniseG]

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

[DeniseG in reply to DeniseG]

Sorry that should say stoma bag x

[ElizaEliza]

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