Bowel Endo Symptoms but none seen during Lap

[Seashells88]

Hi All, I’ve been experiencing some suspicious bowel symptoms that only happen during my period (mucus and blood in stool). According to my own research they can be caused by endo. I’ve recently had a laparoscopy and they didn’t find anything on my bowel so have referred me back to my GP. Has anyone experienced this? Would there be a reason why endo wasn’t seen on my bowel during the op?

I will go to my GP but I just think it’s strange that I only get these symptoms on my period.

Any thoughts / ideas will be greatly appreciated.

Shelly

[Sabrinacolada]

Hi,

I had the same concern post diagnostic lap. I was told however there was some attachment to the sigmoid colon so this was freed and there shouldn't be an issue. They put down the issue defecating etc to opiates but after stopping them realised it wasn't just this. Ultimately the signs for me fit bowel endo and I wanted to rule out deep infiltrative endo. An mri revealed rectovaginal involvement with a large nodule. I paid privately as didn't feel I was getting anywhere soon. I would assume if had waited for the endometresiosis centre refferal nhs and seen a specialist they would have suggested an mri but the waiting list here to be seen is over 6 months plus then time waiting for imaging.

After reading more into this area and after seeing a video posted here about laporoscopy and ultrasound by an expert ( a post by lindle) I had seen there are visualisation issues for some areas during laporoscopy. Thus the cul de sac/ rectovaginal endo may not be possible to fully see.

Trust your instinct. If something isn't right advocate for further tests. Especially signs just on your period is highly suspicious. Do you know endo grade after laporoscopy? If severe you should be reffered to an endo specialist.

Be mindful an mri can show "larger" lesions e.g nodules but if superficial may not show. Other imaging like level 2 sonography/ ultrasound could check for the sliding sign/ signs of endo on the bowel. In my area the ultrasound has always been level 1 by nhs thus just repro tract scanned not bowel.

With your symptoms the doctor may also refer for a colonoscope which is good to rule out other issues but again can miss endo if not infiltrative ( my colonoscope was clear since the nodule is on top of bowel not inside).

❤️sabrina xx

[Seashells88 in reply to Sabrinacolada]

Sabrina,

Thank you so much for your reply, there’s so much helpful information there. Thank you 😊 I am with an endo specialist hospital at the mo and they are having another look (I had to push for that mind and not just get fobbed off with the coil but that’s a whole other issue lol). I do know that my pouch of Douglas / cul de sac is riddled with endo as well as adhesions around the back of my uterus and more around the bladder. They’ve said there’s not too much deep infiltration but the endo is ‘extensive’ in how wide spread it is.

At my first op over 3 years ago they said they had left some on my bowel as they didn’t have a bowel surgeon present so there’s no way that’s disappeared on its own. My instincts are saying there’s something there so it is something I’ll be making sure is kept in mind for my next op. I’m going to the GP purely to rule other stuff out so I can more confidently advocate for myself at my next appointment. You got to play the game I guess even if that does mean a colonoscopy 😬

Thank you again for your reply. It’s encouraging to know that someone else experienced this. I felt like I was going a bit mad lol

Shelly xx

[Sabrinacolada in reply to Seashells88]

I am glad you have pushed for more to be done at the endometresiosis hospital. Endo in the cul de sac is severe and if they said already on bowel but not removed, as you have said it isn't going to go on its own!! I have cul de sac obliteration and was told since the uterus/ bowel are covered in scarring etc they can't move freely which can also mean the bowel isn't in the correct position ( adding to the issues defecating) I assume the endo centre have the prior surgical notes and images?

Logically you'd think further imaging to assess depth, progression from 3 years ago. They should offer an mri or level 2 ultrasound scan to also check the bowel ( if the report just says uterus and ovary it is level 1 and not appropriate for severe endo). Ensure a multidisciplinary team is involved not just gynae for endo-- the endo specialist I have seen says I need surgery of the bowel so has reffered my mri, surgery reports to a colorectal surgeon since they are the ones who can actually assess it and see if surgery could help etc. I have seen him to discuss options. I am also waiting to see a urogenital surgeon.

Again follow your instinct and from what you are saying from your surgery alone it is not just a gut feeling. I had been gaslight so much about my signs told its ibs for a decade. Do not let anyone make you feel its in your head. Even post surgical finding severe stage told just due to meds- I'd actually stopped! Now the damage is real and permanent, don't let it happen to you hun. Push for advanced imaging and if needs be go via pals expressing your concerns, your prior surgical report and the concern of permanent damage/ infiltration. Also add the massive hint that its during menstruation, and keep saying it again to every doctor you see!

❤ Sabrina

[Seashells88 in reply to Sabrinacolada]

I didn’t even think that it could be pulled out of position but it would make sense that it’s a possibility. I recently had a large endometrioma drained (1.5 litres of blood in that monster of a thing!!) but the casing is still there because it’s connected to lots of things it shouldn’t be. Could be causing the bowel to be shoved out of place like it has my uterus. They didn’t request my notes annoyingly but I am going to go about getting a copy sent over.

Thank you so much for sharing your story with me Sabrina, I’m so sorry that you’ve had to experience that and the damage done is now permanent. I think that’s one of my worries, that if I don’t push now then it’s going to get worse and permanent. It’s so frustrating. I hope all your discussions going forward are helpful and you get the medical attention you deserve.

Again thank you so much. That medical gaslighting is a blinking nightmare and you have helped me through my wobble of confidence around listening to my own body.

Shelly xx

[CeCeT]

Hi,

I’m in the same position, when I asked about my bowel after the laparoscopy, the surgeon said he can’t see inside other organs, and to go back to GP for a colonoscopy.

So I’ve asked for a private MRI and the GP has also referred to gastroenterology through NHS. If they both come back clear I don’t know what to do.

Hope you get answers soon x

[Seashells88 in reply to CeCeT]

I hope you get some answers soon CeCeT, it’s so frustrating when you KNOW there is something wrong but proving it is difficult. Fingers crossed for your journey going forward xx

[CeCeT in reply to Seashells88]

Thank you, good luck to you too x