Endo on the bowel?!

[EmmyKB]

I was diagnosed with endo a couple of years ago and had it lasered. All the horrific symptoms went away for a good year. In around November last year I started getting all the same symptoms but worse so was reffered for another little op to look and it showed nothing! This was in Feb this year.

A week after the op, I started exeperiencing rectal bleeding , it was very heavy, almost like a period and included clots (tmi sorry ) this has been ongoing and I still have this, it comes and goes but gets worse when it's time of month,

My doc has reffered me to bowel surgeon following this and mentioned it could be endo on the bowel which made sense as I still have all the same symptoms - extreme pain, fatigue etc !

Anyway to cut a long story short I've just been realeased from hospital after 10 days of being on a surgical bowel ward. I had a scan and flexiscope and it shows the inside of my bowels are healthy! But I've had no tests to look out the outside of my bowel?

As soon as I mention I have a follow up appointment with gyno they discharge me and say they can deal with it. Baring in mind I was hospitalised for the severe pain I'm in.

I'm currently on oramorph and tramadol and it is not touching the pain at all! It is effecting my whole life most of all friendships and work I'm at a complete loss and don't know what to do.

Have any of you got bowel endo and how was it ever diagnosed? Have you managed to get treatment ??

Thanks in advance

[KurlyWurlyb]

Hi, I had a laporoscopy 4 years ago to diagnose Endo and before I had the surgery I knew it was on the bowel area, only because of the pain I was getting around my bowel and when I got the pain it became difficult to go to the loo (as it hurt to push - sorry tmi). It also would hurt up my back and down my thighs. But after I had the surgery the consultant confirmed it was on my bowel and they lasered it away at the same time. Following this they gave me some hrt injections and then on a stronger contraception pill. This all helped relieve the pain but has and will gradually come back over time as it unfortunately won't stop it returning. Hope this helps.

[EmmyKB in reply to KurlyWurlyb]

Thank you so much for replying the pains are all completely relatable I have a follow up meeting soon so hopefully can get some more answers! X

[KSvedenmacher]

Are you being treated at a BSGE centre? If not, then I would recommend you get a referral there as they are the only specialists who should be dealing with your type of endo. If you do have endo on the bowel, a BSGE specialist will find it and will excise it with the help of a bowel surgeon as well. You need proper treatment by a proper specialist.

[BeckyR84]

Hiya i had a laparoscopy back in February which found nothing, I have all the symptoms and pain of endometriosis and I am too convinced that I have endo of the bowel, I had a colonoscopy last week which also said I have a healthy bowel. I was praying in a way that they would find something just so I would have a diagnoses for the constant pain I am in! I too am on oramorph for the pain and it is affecting my life the same way as you! I have a five year old son and should not have to spend my life taking oramorph just to get a slightly more comfortable nights sleep! I'm following this post so I'm hoping you get the answers you are after and maybe they could help me! Take care x