Bowel Endo

[A2207]

Hi everyone,

I'm wondering how people found out they had bowel endo?

For over 10 years I've been diagnosed with IBS. I have daily stomach cramps and alternating constipation and diarrhoea. Over the last 3/4 months I've noticed a pattern of blood in my stool (fresh pinkish blood) this occurs around the time of my period. I continuously take the Yasmin pill and only have a break when I have severe endo symptoms this appears to relieve the severe symptoms after a few weeks as i suffer with a really bad back and weird like contractions of my uterus.

I was diagnosed Oct 2015 with endo on my uterus and bladder. I have an appointment with a gyne/urologist a week on Wednesday but wasn't sure if the blood in stool with it being fresh blood would be a symptom of endo. I suffer with pain during sex, pain passing stools, stomach cramps daily, I never feel like I've emptied my bowel properly and I have occasional shooting pains up my bottom.

Sorry for too much info. It would be really helpful to hear other people's experiences. Im unsure whether i need to go back to my gp and discuss or tell the gyne/urologist next week.

Thank you xxx

[Hidden]

I have confirmed bowel endo - I had lots of symptoms prior to diagnosis (I was diagnosed quite late when my disease was severe). I'd had bouts of unpredictable diarrhoea all through my 20's which I'd managed with diet but this had progressed to chronic constipation, passing mucus and bleeding from my back passage. GP did a few blood tests and insisted that it was IBS. I asked about endo and was told that I didn't have the symptoms :/

When I was finally diagnosed via lap I was told I had bowel endo as the lesions are large and obvious and my uterus is stuck to the bowel on the right with what they call an obliterated pouch of douglas (which is where the gap at the back of the uterus has filled with endo and is stuck to the bowel). I've since then had a scan and another exploratory lap at a bsge centre which has confirmed the bowel endo and showed that my bowel is pulled out of place, which is what is causing the bowel symptoms. I've also had a sigmoidoscopy which was clear but showed extensive internal haemorrhoids which the gastro said have been caused by the chronic constipation and are the source of the bleeding.

Please tell your gynae you are having these symptoms - we're all too often told bowel endo is IBS and it's not. The knife up the bum pain is very typical of endo on the bowel as is pain during sex.

[A2207 in reply to Hidden]

Thank you. I just always feel when I go to see a gyne I am eye rolled at and ignored like I'm a hypochondriac. My previous gyne told me to have kids and it would go away if only I could manage the pain off the pill. Pre surgery I was also told from him the pain was all in my head, hoping with this one being a woman I will get somewhere xx

[Hidden in reply to Hidden]

I had an X-ray that recently showed my bowel had moved strange enough. I had one in February and it showed constipation but no change in position, then one in July that the doctor said my bowel had moved. I don't have issues with constipation but I got diahrea every period since I was 8.

Pelvic exams hurt and I had a rectovaginal and I almost blacked out. Out of curiousity could a doctor feel anything from the pelvic exam?

I've probably had endo for over 9 years now and I've had all the blood tests come back fine.

[Sandbach in reply to Hidden]

I have had IBS for 43 years, I'm now nearly 5 years free from it - I did mine through alternative therapies. Feel tons better - on HU site for dyslexia but I'm happy to share wham and another lady have done?

[Starry]

Yes they are symptoms and do raise them at your appointment. X I've had diarrhoea like clockwork on my menses forever but was only diagnosed after a nodule was found in a standard gp manual exam that is in between my vagina and rectum but most I think experience symptoms more like yours.

[Hidden]

Mine was diagnosed during my laparoscopy. Looking back I had all the symptoms and didn't realise what it was. I am now gluten free and trying to eat as little dairy as possible (in addition to having Mirena) and that all seems to helping a lot. X

[Ceryspalmer]

I have exactly the same issue as this. The doctors just told me I had IBS, they tried testing me for other things like Crohns. I'm still waiting for a diagnosis. I have my gyno appointment in January so hopefully it will slowly start to get better when I'm aware of what's actually wrong with me!

[Stellauk]

I had MRI scan and that showed endometriosis lesions everywhere including bowel area. You can really have confirmed diagnosis via a lap. Is your gynaecologist BSGE credited? As you will need a colorectal surgeon if the Opel is involved. Otherwise they won't touch it.

[A2207 in reply to Stellauk]

No just general gyne, last years lap was a general too and I don't believe he looked properly he made comments pre surgery of opening me up looking to see that there won't be anything and me managing the pain in my head. But after surgery when he found endo he wanted me to have zoladex.

My gp who's been really good referred me to this gyne and said give her a try before I transfer to a bsge so here's hoping she is going to sort the bladder side out which to be honest is the most frustrating at the moment.

[Stellauk]

The guidelines are you best to be treated at a BSGE centre where they have all the right people in one place. You then just have one major operation that excise all lesions completely. I was treated that way so at my operation there wer three surgeons urologist, gynaecologist, and colorectal surgeon. The result is excellent.

However, I know people who were treated locally by a general gynaecologist and had good result too. It depends on the skill of the surgeon and complexity of the condition. It is just with BSGE ones you are more assured.

I am not sure leaving some endometriosis lesions behind due to lack of colorectal surgeon is a good idea. It may still leave you with pain etc. Then you have to go back for more surgery. The more operation you have the more adhesions and complications there are.

Could you let the gynaecologist know about your bowel issues? Mine specifically asked about it and other embarrassing questions too. 😥 I also have to fill a questionnaire that covered all aspects too.

Good luck

[GrittyReads]

In addition to what others, above, have said in relation to Endo, ibs, bowels, etc, I would make sure you have been checked out for all other possibilities too.

With blood in stools I would want checking for piles, but also hoping for a colonoscopy to check the full bowels. Also, I think a full ultrasound of the entire abdomen is called for as well as a transvaginal ultrasound to check ovaries etc.and surrounding area.

With symptoms such as these, it's worth having everything checked.

Take care.