Rectovaginal endo and surgery

[EKP31]

Hi all

I’ve been diagnosed with stage 4 rectovaginal endometriosis and am currently waiting an operation on 19th Sept to have it removed.

I have been told that it will be a major operation (3 hrs) which could result in me having a temporary stoma.

I was wondering if anyone else has this condition and whether they have had surgery to remove it?

I’m really worried about the complications but am suffering with daily bowel related symptoms and aching in my rectum which is impacting my life.

Many thanks

Emma

[EK20]

I haven’t had this surgery myself but I also have stage 4 bowel endo and have been told I would need the same surgery as you and likely to need temp stoma as well. My symptoms are not bad enough for me to have the surgery and I’m focusing on IVF first. I’ve done lots of research and women that have had the surgery sometimes didn’t need a stoma on the end but we’re told there was a risk. Other women who did have the stoma said it took some getting used to but benefitted by not being in pain and could eat almost anything. The reversal is a smaller op but it takes a long time for your bowels to get back to normal could be several months. It is major surgery and will take a lot of healing but if you’re in daily pain then sounds like it’s the best option to improve your quality of life. I hope it all goes well and I’d be interested to hear how you got on.

Emma x

[EKP31 in reply to EK20]

Thanks very much Emma.

Can I ask what your symptoms are? I have permanent back pain and throbbing in my rectum and my bowels leak fluid and mucus so I have to wear a sanitary towel every day now. It seems to be getting worse not better. Do you have similar symptoms?

Ive also been trying to get pregnant and now have funding for IVF so my options were to have the surgery or go for the IVF. I’m hoping that I won’t need a stoma and can recover in a few months then start the IVF. It’s just so hard to know what is the right thing to do.

Emma

X

[EK20 in reply to EKP31]

Oh I feel for you and the back pain can get really bad sometimes. My symptoms are mainly constipation (usually resolved with movicol or diet) and back pain but not everyday. I also get bloating a fair bit but now i tend to just stick to eating salads/soups/light foods and it's better. I really hope you don't need to have any additional hassle such as the bag. Fingers crossed you can move to IVF straight after. You need to be well if you're going to be a mum Are you still able to work? Good luck x

[EKP31 in reply to EK20]

Ah ok. Still sounds awful though. I really hope the IVF is a great success for you. Exactly those were my thoughts. Yes luckily I work from home most of the time so can manage it at home but don’t know what I would do if I have a job where I have to be physically at work everyday. I’m really lucky in that respect. Do you think you’ll have the operation in the future? What I’m not clear on from my consultant is whether there is any way to get rid of it or shrink it dramatically without surgery. I think the answer is no. X

[EK20 in reply to EKP31]

That's good that you can work from home (I am today) it makes it so much easier when dealing with symptoms. I'm not sure if i'll have the op in future but I do know that it's only likely to get worse. I would have it if it started to impact on my job or relationship with my husband but until them I think I'll carry on with managing it with diet / exercise etc. I'm hoping that I'm able to have a child and then go into a menopause soon after (i'm 39) and that may calm things down somewhat. I think the only way to reduce symptoms or shrink it is to go into an induced menopause which then has other side effects like hot flashes, aching bones etc... x

[LisaG17]

Hi there everyone! I have a longstanding history of endo, rectovaginal endometriosis. Surgery would be very risky as it is associated with high risk of bowel injury! The treatment strategy was to buy time until I went through the natural menopause, which is happening now! I am 49 years old. I had a course of Zoladex and went onto the depo injections September 2018. By October I saw a massive change in my personality and it was just getting worse. Terrible mood swings, depression, severe anxiety, hot flushes at night, fatigue and the big one weight gain! Basically all of the above that you have mentioned. I dont know who I am any more. My personality has changed so much, I just want to be, as you said "me" again. It is destroying my marriage, my relationship with my 9 year old as my moods swings, patience and tolerance levels are so high. Im now very subdued and just so unhappy. I had to go back to my Gynae and tell him I need to come off of this evil drug that is destroying who I am. He has now suggested I go on the mini pill (Desogestrel) which I started taking last Wednesday. Ive noticed bleeding, enough for me having to wear a panty liner!!! I have read that this is normal. I hope that this is a breakthrough for me and I am trying to be positive. Hoping that the last 7 months of taking the depo will leave my body soon.

[EKP31 in reply to LisaG17]

Really sorry to hear that Lisa! That sounds horrific! Really hope the mini pill works out much better for you and feel much more yourself soon x