Endometriosis on the Bowel

[gc1990]

Ive been diagnosed with endo when I had my lap in april - gynae referred me to gastro surgeons as its spread to my bowel and has stuck parts of my bowel to my abdominal walls - agony - does anyone else suffer with it on their bowel swell - and what treatments have you had / have they worked ... sorry for all these questions my brain is one big question mark at the moment as still trying to get my head around this all

[Yazza]

On my diagnostic lap (2 years ago) my general gyni found endo on my ureter and my left ovary was adhered to my pelvic sidewall but by far my worst pain is with my bowel and back lower and up to kidneys!

After a 2 year battle I'm now going for surgery this Saturday with a specialist team including a endo gyni urologist and bowel specialist (currently on a liquard only diet start bowel prep tommorrow ) arghhh...

But my best advise for you is do your homework on your nearest endo treatment centre you can find this on the BSGE website under the heading endo treatment centres also check out the team (just google there names to find reviews) then go back to your gp and ask them to refer you there. (They can't refuse as it's part of the nhs choices scheme) although they may try and discourage you but stand firm and don't take no for an answer as this will be critical for your future years. If it's not excised properly you can end up with repeated surgerys.

Good luck Sharon. X

[gc1990 in reply to Yazza]

What are they going to do in surgey, cut away the adhesions or laser off the endo or both?? I shall do some research luckily I am under private medical through my dads company, had mirena fitted which so far is okay still in a lot of pain during period i also have it on ovarian fossa, my pelvic ligaments and ureter also but the most painful is the bowl I without putting horrible images in your head i go to the toilet once every 2 weeks then on my period when the endo rely flares up i can't go at all and its so painful or it flips to i can't get off toilet!! the gastro surgeon has said my bowl has simply stopped doing it job due to the endo ruining it half way through a big laxative regime which is not so fun whilst at work but seems to help the constipation, however the pain management is not working mirna coil isn't making anything any less painful yet on the bowl side - I've been prescribed some new drug to help with bowel pain specifically if this fails then surgery but i daren't ask what it entailed so may questions to ask and things to talk about but I freeze up in my appointments and forget or just think of them after, kinda feel lost with it all as its all happened over a matter of months. Good luck with your surgery hope it all goes well x

[Yazza in reply to gc1990]

Thankyou I'll let you know how it goes:@/

But my advise is to keep pushing as if your still bleeding this could mean the endo is still active and could cause further damage don't delay if poss is the best advise..

I first went to my gp in 2011? But as it gets worse trust me you will find it within yourself to fight.

The only way I can think of how to explain it is if you go in under a general gyni it's like a trainee stylist trying to cut your hair but you go to a salon for a proper job in other words endo centre anything else will just be a stop gap....

I have heard some amazing things about the centres in Manchester I know it's a distant to travel but will be worth it in the long run. Xxx

Keep fighting endo warriors together. Xx

[Yazza]

Also the best proven method is excision surgery as if they use laser or diathermy they may leave some behind and if they do it will re grow if they don't have the expertise for excision they aren't the person for the job....

Yazza xx

[blondielocks]

Hiiii. Yep I had it on bowel which was also adhered to abdominal wall. They simply detatched from wall ablated the endorsement then put a gauze thing in which stops adhesions I think. I did massively underestimate how long my bowel would take to recover though. It's taken 6 months to get to the point where gas isn't too painful to hold and my toilet rhythm has only just got back to normal (tmi!!!) Worth it though as I don't get the horrific back tugging pain anymore xx

[Clairecarebear]

I am going to have surgery with Mr trehan I have already had my lap. He is based in Halifax and only sees private patients. Have a look on google. He has been fantastic #3 weeksandcounting#surgery

[Heidi11]

Hi yes I've got Endo on my right ovary and its stuck to my bowel. I get really bloated, constipated as well as diarrhoea. I've been on monthly prostap injections as I'm awaiting surgery. The injections have worked well for the pain but apparently they don't stop Endo from growing. Hope this helps xx

[Bobenhams3]

I've also got it on my bowel and have been told I will need part of it removed as it is stuck to something else. Has anyone else had this done? What happened? What was the recovery like?

X

[Sweetyassi]

Hi,

I had Endo inside my bowels, inside my bladder, both ovaries. I've had 5 operations only 4 were unsuccessful. The last operation I had was last year November, I'm still recovering from it. The surgeon removed all Endo from everywhere and removed all adhesions too. My insides were a mess, everything was stuck together and over 5 hours to unstick everything. I had to go private to get my last operation done as he was a specialist unlike my NHS surgeons.

I used to so bloated, had an eating disorder, was in so much pain I couldn't cope. I'm now on a gluten, wheat, dairy, soya free diet which is helping me.

Hope everything works out for you.

Sweety

[louburns1]

Hi I also have endo on my bowel and have had my left ovary n tube removed 4 years ago . At the time I was supposed to have a hysterectomy done which was abandoned during surgery because the is so much damage. Now I am on the prostap again awaiting hysterectomy with my consultant and a bowel surgeon to put my bowel back in place and remove some of it if nessacary. Dreading the whole thing but can no longer cope with the pain and the contractions from bowel movement. Been suffering 20years. So don't let GP put you off seeing someone new about your endo.

Lou x