Bowel endo / rectal bleeding?

Hello, new member here 🙂 i was diagnosed with endo in 2016 (mostly on my left side, pelvis etc) managed it for a while since my op, had my daughter 3 years ago and im now starting to have some pains again (i have the mirena fitted) like hip pain, upper / lower abdominal pain, back pain etc.

A couple weeks ago i went to a&e for rectal bleeding /blood in stool (poss mucus?) and minor abdominal pain. Not in pain when i went to the toilet. They didnt seem too concerned and took my bloods and they were fine. Ive been panicking for 2 weeks, calling my dr in tears as im worried its something else (ive been given propranolol for anxiety to try and calm me down).

Ive gone today and i had a shooting pain when i was going to the toilet and im wondering if this could be endo on the bowels? I couldnt see if there was any blood. Should i push for a colonoscopy to rule anything else out? Im scared to go to the toilet i feel so stupid 😔

Ive already been referred to a gynae consultant and they have expedited this so im hoping i will hear soon but the wait is making my anxiety worse 😔 can endo spread elsewhere after a period of time? Its coming up to nearly 6 years since my op.

Sorry for the long post, i have no one else i can turn to who has this nasty disease and im scared its something more sinister 😭

[Livingdeadgirl]

Hey,

So sorry you're having such an awful time atm. I have bowel endo, my uterus and bowel are stuck together, and I regularly get the shooting pain. Sometimes not even while I'm going to the toilet, sometimes just randomly which was really awkward before working from home covid when it would happen in the office because it makes me want to scream. I also get a lot of mucus, and on occasion have had the odd bit of blood but not regularly. My husband has awful stomach and heartburn issues and had blood in his stool and they weren't overly concerned and nothing showed up on his colonoscopy so I'm guessing if they aren't that worried at A&E it might be a good thing? Every possibility it's your endo x

[Hidden in reply to Livingdeadgirl]

Thank you for replying, i havent had the shooting pain for a while and the bleesing isnt constant but its really getting to me 😫Its so awful this disease, i hope yours is controlled for you x

[WanderlustLost in reply to Livingdeadgirl]

Came here to say this. I also have bowel endo with my bowel uterus and ovaries stuck together. It can grow back. It can cause bleeding and pain. And if you’re concerned it’s endo regrowth an MRI should be able to pick it up. Good luck!

[Livingdeadgirl in reply to WanderlustLost]

Are you in the process of having any sort of management? My gyn put me on 6 months of Prostap injections, when really I just want to be referred to the endo specialist. It seems like surgery is an absolute last resort, but the past 3 years of doing nothing as advised by my previous gyn has just made it worse.

[WanderlustLost in reply to Livingdeadgirl]

I’ve got monthly Decapeptyl injections (and HRT) plus hormonal birth control, and pain management. I really need another surgery but the waiting list is super long now thanks to covid. I’ve got an appointment to consult about surgery next July. 😭 I really want kids but I’m 38 and honestly the idea of stopping my treatment to get pregnant is terrifying. Even if I conceive straight away that’s still minimum 2 months of full, no-holds-barred pain! I have decided if they offer me the choice I will go for a full ovaro-hysterectomy.

[Katinldn]

Hi! Sorry to hear you are having such a terrible time. I had endo and adhesions in my pouch of Douglas and around my rectum (they said it looked like a ball of string when they went it that had caused my rectum to narrow and stretch). I had terrible pain every time I had a bm that would last for around half an hour and lots of rectal bleeding/mucus. I was constantly in agony - bloated and would often vomit after meals. Sex was also practically impossible as I could feel something up there and would often be left with pain after intercourse. It took me 6 years to get a diagnosis. Drs kept saying I had ibs, that I was just depressed after a very difficult and traumatic delivery of my son. All my tests kept coming back clear (mri, colonoscopy etc), but as I had a long history of endo, I knew something wasn’t right and kept pushing. It was only when I saw a very specialised team that they gave me a lap and they found extensive, deeply infiltrated endo in there. I could feel the difference as soon as I woke from surgery and have never had any bowl issues since. You know your own body and if something doesn’t feel right. Although rectal bleeding doesn’t necessarily mean it’s something serious, it’s not normal and should be investigated, especially if you have a history of endo. I hope you get the answers you need xxx

[Hidden in reply to Katinldn]

Thank you for replying. Ouch that sounds painful 😫 ive also been feeling nauseous but put that down to me being ao worried. Now that you mention it i did have endo around my pouch of douglas so i could have it around the bowels this time around x

[Katinldn in reply to Hidden]

Definitely. It’s all so closely connected in that area. Hope you get the answers and treatment you need. Good Luck! Xxx

[Livingdeadgirl in reply to Katinldn]

Sorry to jump on this reply but what surgery did you have? I'm in the middle of trying to push for surgery but they're just dragging their heels

[Katinldn in reply to Livingdeadgirl]

I had a laparoscopy and they excised everything when they went in. Good luck getting your surgery - keep on pushing xx

[EternalSunshine87]

I have endo of the bowel and every time I have a period I get blood and mucus come out. Cameras revealed nothing, but they believe it could be coming through the bowel when I have my period and that's why it only happens around that time. I've started a tri-cycle of the pill, but that's early days. I'm still getting a bit of mucus and spotting every now and again. It sounds highly likely it could be endo that you're experiencing.

[Hidden in reply to EternalSunshine87]

Thats awful 😔 i think the bleeding made me go into a tail spin and panicked. Ive convinced myseld i have something else 😫 x

[EternalSunshine87 in reply to Hidden]

It's not a symptom I have always had. It's got to be months and months though. I can't keep track! I try to just think of it as an incredible inconvenience and annoyance. I would definitely push for answers if you aren't happy.

[Hidden in reply to EternalSunshine87]

Thank you, ive written to my dr today to try and push for some scans. Its the waiting game its making me feel awful x

[Pcry]

Hi, I have bowel endo also and I definitely experience shooting and aching pain in my lower back area and particularly when passing during my period, but also at all varying times in my cycle!

To answer your question about whether it spreads.. well my understanding is that it can spread and tends to worsen after having periods - but I assume everyone's experience with it is different.

Good that you are seeing a Gynaecologist as they will likely be able to do a scan and see whereabouts your endo is at the moment. I would try not to worry, as previous comments say if it were more serious they wouldve checked on it in hospital!

[Hidden in reply to Pcry]

Its not often i get the shooting pain but i suffer with lower back pain, hip pain and have sciatica in the past. I have so many issues going on i panic thinking the worst x

[singingelephant]

You’ve given me such relief that I’m not alone. I have very very similar symptoms, it’s so horrible, I’ve told the doctor multiple times I’m worried it’s more but because my bloods have come back ok, they’ve told me not to worry 🙄..

It’s horrible! I’m still undiagnosed and awaiting my laparoscopy, I’m hoping it comes soon. I’ve been told by multiple GPs that it’s probably in my bowels.

I really really hope that you have some answers soon!

[Hidden in reply to singingelephant]

Oh im so glad im not alone too! Thats why i joined this forum as no one i know has this 😔I hope your lap date comes round soon! X

[singingelephant in reply to Hidden]

I have been prescribed some naproxen which seems to help take some of the edge off the pain but have to take anti sickness tablets at the same time to protect my tummy as I get bad reflux otherwise 🙈X

[Hidden in reply to singingelephant]

Ive got that for my back but reluctant to take it cos im 'feeling' aches and pains everywhere so im scared to take anything incase i irritate it!!! Its not doing my anxiety any favours!! Ive been given omeprazole for my nausea (thankfully its subsided) which i think is defo me worrying so much 🙈 x

[singingelephant in reply to Hidden]

I know the feeling. I would take them a lot more if I didn’t worry I’d end up being reliant on them 🙈

[Hidden in reply to singingelephant]

Its so rubbish!! 😫 x

[singingelephant in reply to Hidden]

For nausea I find peppermint or ginger tea helps x

[Hidden in reply to singingelephant]

Thank you ill give it a try 😄 x

[Krithika]

Hi honey,

I had similar symptoms with my endo which was on the bowels, rectum, bladder, uterus, ovary, etc.

I was bleeding from both ends. A colonoscopy didn’t show much for me but I think it’s worthwhile.

Getting a laparoscopic excision by end endo excision specialist is what helped me - the bleeding stopped immediately and the pain heavily reduced. Holistic and dietary changes took the pain away completely - such as doing a reintroduction diet

[Hidden in reply to Krithika]

Oh my gosh you poor thing thats terrible 😔 i may give my dr a call (if i can) and try and get a colonoscopy just to rule out the worst things. Ill have a look at diet changes, thank you 😊 x

[Alita88]

I had the same thing. Had excision surgery and they found a 14cm adhesion on my rectum (between rectum and uterus) I also had it on bowel and other parts. I had an ileostomy for a few months and then never had any pain after that. I don't know if it'll come back as I'm now pregnant. Hope not. I had had like 3 colonoscopies before diagnosis and they didn't detect anything. Only when I had an u/s at the endo specialist.