Could this be bowel endo?

[DalmatianGirl]

Hi all

I had a laparoscopy in October and I told them beforehand that I felt like I had bowel endo, as I often bled from my back passage during my period as well as diarrhoea. They informed me that they would check the surface but wouldn’t check inside.

So I had the surgery and they found endo but she only mentioned my pelvic area.

I had the coil fitted which I was assured would be the best treatments, however fast forward to now and I am supposed to be on my period according to my tracker, and I’m not bleeding from the front, but I am from the back, as well as awful rectal pain and I have had diarrhoea 6 times since I woke up this morning at 7.

Surely this can’t be normal! I have logged it with my GP who has written another letter to the gynaecologist and also had a blood test to check for any raised inflammation, but it’s really getting me down that if I did have bowel endo they didn’t look at my bowel properly in the initial surgery.

Just wondering if anyone has any advice on bowel endo?

Many thanks!

[EternalSunshine87]

It's not really advice, but just letting you know it happens to me too. Quite often I get mucus and blood from the back before my period starts and then it continues during it. I found out I had endo through MRIs. I did have cameras go looking for it in my bowels, but nothing was found. They said that perhaps it permeates the bowel and comes through during my period. No idea if that's worse.

[DalmatianGirl in reply to EternalSunshine87]

Thank you so much, I will ask about an MRI and see if that’s an option!

[SK2021]

Hey I’m so sorry you’re struggling! I have bowel endo and I have all the symptoms you do. Please push until you get heard xx

[DalmatianGirl in reply to SK2021]

Thank you! I’m supposed to have an appointment next month but it got cancelled and never rescheduled! I will keep pushing to get it sorted because I couldn’t even sit comfortably yesterday! Xx

[Coralfloral]

No advice unfortunately but I’m in the same situation as you. I have bleeding from my back passage every month for years, and I feel like it’s always been dismissed. Had my lap last year, they found endo in my pelvic area, and that my bowels were stuck to my pelvis with adhesions. The surgeon told me he thought the adhesions were the result of inflammatory bowel disease, and that I should refer myself to a gastroenterologist for further tests. I was also told that it can’t be endo as it doesn’t grow inside organs, which I know not to be true! I’m still waiting for a date for a colonoscopy but quite nervous that it won’t show anything or explain the bleeding. Perhaps you could ask your GP if a referral for a colonoscopy would be worth pursuing?

[DalmatianGirl in reply to Coralfloral]

Oh gosh I am so sorry that’s infuriating! I hate the way it’s dismissed so much! Yes I will definitely speak to them about that - I’ve been told I just have IBS in the past but I never had bleeding until my endo started!

[Char411]

I had this. I had a colonoscopy and no endo was found inside my bowel but was having the same symptoms as you. When I had my surgery to remove my endo they did find it around the inside of my rectum, which explained the bleeding. Can you ask your gp to refer you for a colonoscopy to check inside. Sending hugs x

[DalmatianGirl in reply to Char411]

Thank you so much, I will definitely ask them for that! X

[Dogmad6]

Rectal bleeding is a classic symptom of endometriosis affecting the bowel. I think it's appalling how you seem to have been fobbed off. Even gynaecologists are so lacking in knowledge about endometriosis. They always seem to want to insist people have IBS. I've had bowel endometriosis excised several times. I haven't been comfortable sitting for the past 20 years.

Unfortunately, I think you are going to have to be quite assertive to get listened to. You need to be seen by a decent specialist. It's very hard but try to keep pushing for the help you so need.

Good luck! I am sorry to hear your story, people should not be treated like this. xx

[Dogmad6]

ps the diarrhoea and rectal pain are so horrible and also classic symptoms of bowel endometriosis. It's so horrible and I've suffered so much with this myself that I really sympathise. xx

[DalmatianGirl]

Thank you so much, this is absolutely so true!

I had my surgery with a general gynae because I was desperate (I had to go private) but it’s very clear there was a lack of knowledge, from being told the coil was the treatment to stop it coming back to all of this now! I also have a 5cm cyst on my right ovary which popped up the month after surgery and has been causing me agony ever since!!

I definitely will. If I don’t get a replacement appointment through soon I will ask to be referred to an endo specialist - I think there’s one in the next trust to mine. Luckily my GP does seem to be very on the ball and has rewritten to the gynae to get my replacement appointment, I just can’t believe I would still be in such a state when I only had the operation in October!

Thank you for your help xx

[HappyEl]

Hi, i have the same too, so i have pushed my gp and now been referred to a bowel specialist so see what happens. I also get the discharge at time of ovulation from my back passage so feel mines at least rectal. Had anal fissure in the past due to awful constipation etc so i imagine while this was healing and i had my period the cells could have got inside maybe and made it worse. Wait and see now. Poss ask to see a bowel specialist as my gyne dr said they dont deal with the bowel side. Hope you get referred x

[Nat107 in reply to HappyEl]

Hi I no it’s bed. A few years but can I ask how you got on, did the bowel specialist find anything as I had a bad bleeding from bowel end e cry pain yet colonoscopy was clear, I’m waiting for gif a gynaecologist appointment since referral after a ultrasound as had pains then with bloating & wiping lot of bowel blood in nov 22 which showed a simple cyst on ovary and ulcerative appearance of my endometrium, referred Dec last year, as having constant pelvic pains bloating like I’m on a heavy period still ongoing but I have already been through the menopause in my 30’s, hope you hit sorted