bowel endo? confused, frustrated and fed up!!

[Meriel_Owen]

Hi ladies.

I have endo and after years of rectal bleeding ONLY when on my period, and all the horrible pains associated with it, I'm back to square one with my gyne. I feel like I'm in a hamster wheel when it comes to doctors. I had a colonoscopy which came back clear, but I wasn't on my period at the time and wondering if that had something to do with it? I've just been referred back to my doc with probable hemorrhoids, and no plan for further investigation from them despite my pleading with her previously. FED UP. Any advice? Feeling unheard and like it's all in my head. Of course I'd rather it wasn't endo but there is so much pain and blood when I have a bowel movement, and often even without going. Also this huge feeling of pressure in my pouch of douglas area that my instincts, after having this horrible disease my whole life and two laparoscopies, are telling me otherwise.

TIA xx

#colonoscopy

#bowelendo

#laparoscopy

[Jcwy]

Hello, it seems this is a recurring problem with drs. For years and years this is how I felt. For me a few minutes after I eat I have to use the bathroom without fault. If I don’t or can’t I’m in absolute agony and most likely will get backed up. I know this is different from what you are describing, but I feel like endometriosis effects so many areas of our bodies and so many different side effects. It’s one of the worst disorders I feel.

[Char411]

They never listen it’s so frustrating! I have exactly the same thing, my colonoscopy was also clear but wasn’t done during my period. I knew 100% it was menstrual blood.After my surgery they said one of the places my endometriosis had grown was my rectum (how lovely) and pouch of Douglas and that was the reason for the rectal bleeding. It stopped once removed after surgery but that was 4 years ago and it has slowly returned but much milder and so far without the shooting pains.

My gastroenterologist did say that it not showing on a colonoscopy was great news as it’s the inside of the bowel and the only way for it to show would be if the endometriosis has perforated your bowel.

Keep pushing for confirmation of what you already know and good luck lovely xx

[Meriel_Owen in reply to Char411]

Thank you! Yeah, I got told its probably piles and to eat more fibre (I'm a vegan and eat so much fibre I have to make sure I don't eat too much!) I'm noticing a recurring theme here....I'm going to mention it to my gyne. xx

[EternalSunshine87]

I also have what you are describing. Again, all clear when they looked inside, but because my MRI had shown that it was there, they figured it was somehow coming through during my period. At the moment, it's just something I live with as it's only during a period that I seem to get the blood.

[Meriel_Owen in reply to EternalSunshine87]

Wow, thanks for your reply! This is my theory of what must be happening. I just got a letter from the consultant saying how it must be piles which we all get from time to time, and that a high fibre diet and plenty of fluids should sort it.....I feel genuinely ignored and insulted!!! They knew I was coming in with the problem only showing when I get my period...And for years....Did you choose to live with it after the MRI? I hope you're managing ok. xx

[EternalSunshine87 in reply to Meriel_Owen]

Yeah. They said as I'm not really in pain unless on a period (when bowel movements are frequent, painful, gassy and bloody) that surgery was a last resort. I'm worried that if I have surgery they may not be able to get it all or they'll need to take the rectum and I'll end up with a colostomy bag. Something I just can't get my head around having forever. I've gone back on the pill and I'm trialling a tri-cycle. I haven't completed one yet, so I don't know if it's better. I've still been getting the odd bit of blood from the bowel I'm assuming when my period would normally be, but it's nothing like what it is on my actual period. I mean my bowels still seem to be affected in that I need the loo many times a day, but it's manageable and not really affecting my work, which it had been.