Reoccurrence of Rectovaginal endo

I’ve had an MRI recently which shows my Rectovaginal endo has reoccurred after hysterectomy and bilateral ovary removal. My gynaecologist think the risks of further surgery may outweigh the benefits. She has treated me for years in a BSGE specialist centre and I trust her implicitly. My question is whether anyone has experience of a similar situation and what did they decide. I’m in pain every day, taking the max daily dose of paracetamol to try to manage it and I follow the endo diet. It’s bearable but I’m not sure it’s something I can accept forever. But the risks of the surgery (Bowel resection and temporary colostomy) aren’t great either. I don’t know what to do..... x

[Christin_a]

Hello Janine.

It's a tough one but you nerd to weigh up the pros and cons for you and that may help you decide. As we'll all have opinions based on how we weigh it up but you know the pain you're in etc.

I personally would have the surgery due to endo being progressive, so I would rather have surgery now with the potential temporary colostomy vs leaving it years and the chance of the colostomy not being temporary. But I know people who wouldn't want that risk until its absolutely necessary.

If you're struggling to come to a decision. How about getting a second opinion on your case to see if another specialist agrees with the options/risks etc?

[Hidden in reply to Christin_a]

Thank you for your reply. I feel like this is a difficult decision and probably the most difficult one I’ve had to make in relation to my treatment so far. Because I have such a good relationship with my consultant and trust in her advice I don’t think a second opinion would necessarily help. I think if they said something different I’d wonder if that was because they didn’t have the level of knowledge of my case that my consultant does. I’m concerned that a further surgery would involve a resection and a temporary colostomy and the thought of that really concerns me. I wish I knew what to do 🤷‍♀️ Xxx

[Busy-Lizzie]

Hello Janine,

It's good to hear you trust your consultant. You've obviously built up a good relationship over the years.

Only you know your body and you hsve to trust your instinct.

How long is it since your last op?

Your specialist might also be considering risks of adhesions and potentially further surgeries for consequences of your previous hysterectomy such as pelvic floor repair. In which case you're not only facing the risk of endo surgery. So it is worth considering her view on risks and thinking about whether the pain is unmanageable currently.

Have you consulted a nutritional therapist for guidance and looked into some of the newer supplements that are evidence based? You might find it helpful to have a consultation.

Take care.

X

[Hidden in reply to Busy-Lizzie]

My op was May 2018, it was my third op for endometriosis.

I haven’t seen anyone in connection with the nutrition and supplements side of things. I do find following the endo diet seems to help me though.

I’m worried about another surgery and the risks of needing a bowel resection and colostomy. But I don’t know if I should just try to cope with my symptoms or if I’m being silly living with them just because I’m scared of this op. I have some better days than others. On the better days I feel like I can manage the symptoms but on the bad days it really gets me down xxx