Bowel symptoms

[Janeyd27]

Hey,

In hindsight I always had gynae symptoms but due to lack of knowledge didn't realise. By 2011 these were extreme. Was diagnosed with endo 2012 but think they didn't realise the extent of it. Had laser which now realise is mistake and mirena fitted. Things didn't really improve. In 2014 had another lap where endo was missed. Private lap in early 2015 found and excised it. By 2014 I also had bowel symptoms so was getting told IBS. At that point it was lofs of diarrhea with constipation. After my excision I had a good few years including bowel before everything built up again. 2017 had my coil out and bleeding even worse. Subsequently had MRI diagnosis of adenomyosis and got coil back in and back to back pill waiting for a lap due to suspected endo of USL/bowel. For last 2 years my poos have been getting smaller and smaller and floaty and floatier. They are hard and painful to pass. On the low fodmap diet but this has only reduced gas, odd days where I would go a lot which was actually quite a relief. I have constant pain left side, back and leg and on amitriptyline. I seem to be having cycles despite the pill. Does anyone who has/has had bowel endo know these symptoms? Starting to really worry the about the bowel symptoms. I literally can't produce a normal poo. They're all floaty pebbles despite exercise, lots of water and good diet. And never feel empty. Like a fullness all the time. No lap in sight either. Asking as can't find anyone else describing this x

[Reggiefelix17]

Hi ya Jane

Sorry to hear you have had a few years of crap !

I started suffering with bowel issues as soon as I come of my pill 3 years ago

They did the normal thing oh it’s ibs

I had lower left staving pains and terrible bum pain and pressure when I went to the loo

Anyway after two years of being under the bowel team they did a colonoscopy and said I have bad ibs and twisted bowel

The scan was awful I had three nurses holding me on the bed ...

They also said there was ectopic tissue found

Anyway I was referred to gynaecologist

They did a pelvic scan and it showed a cyst on my uterus so I was booked for a lap and boom I have stage four endo bad all over and a big lesion on my bowel

Which made sense

My symptoms where

Gas , really bad bloating

Sharp left pain

Back pain bum pain

I have regular periods but oh my god I feel like I’m dying ,

Mainly on my bowel

I pass lots of pus ans mucus from my bowel ans blood at times

I can’t eat loads of things !

I’m now down for a lap to remove the lesion on my bowel on the 20th June

I’m so poorly with it

Hope this may help u xx

[Janeyd27 in reply to Reggiefelix17]

Thanks for your reply.

I'm very similar to you but only had mucus very occasionally. Know the bum pains well! I'm waiting for a lap but no date in sight... I actually went to GP Friday but I just feel 10x worse as she is just convinced it is IBS and put me on these sachets which have made me feel worse. I already do the low fodmap and am getting worse. I think I have a touch of IBS but there is something else. My pain is the same place not moving around and haven't got the gas/bloating now. Last time I was on these sachets I ended up in hospital with a queried bowel obstruction...

She also just kept saying I was depressed. I'm pretty unhappy with my situation yes but it's not what is upsetting my bowel, it's the other way round. I also had blood in my wee sample but she didn't seem bothered. I never see her if I can but the GP on phone had wanted someone to feel my tummy so thought I should go in.

Do you get pain in your back and down your leg?

I have adeno too so dunno if bowel just squashed.

Good luck with your lap in June Xx

[Reggiefelix17 in reply to Janeyd27]

Yes I get pain in my back and legs , the gps don’t have s clue sometimes , they told me for two years that I had ibs which I have got but I also have stage four endo really

Bad and big lesion on my bowel that no one would have known about unless I made a fuss ! I also was told it could be because of being low and anxiety, so make sure you push it , go with your gut feeling get it checked out hope they check for you soon xx

[Madula]

Hi,

I also have bowel symptoms! I looked into getting a hydrotherapy colonic to literally flush out the waste as I really think it would help. I have similar symptoms to you. My doctor advised me I have to wait until my operation (It's in 2 weeks) as it could aggregate my endo if its on my bowel, I plan to have one after I'm healed to see if it helps.

You might want to speak to your doctor about if that might help you? It's awful feeling like you're full of waste. A colonic might help. Definitely do your research though, hydrotherapy gravity colonics are the best from what I've heard.

Wishing you health and happiness!

[Janeyd27 in reply to Madula]

Thanks for your reply. Yeah I may give that a go. Like you I'm bit scared of aggravating things. If you see my reply to the other lady I've been put on these sachets and it says on packet don't take if you have a bowel obstruction. Gynae thinks my bowel may be stuck so not sure this is the best idea. Feel worse for taking them. Good luck with your lap. Hope it makes a big difference for you xxx

[Madula in reply to Janeyd27]

Thanks for the well wishes! Yes, we do have to be careful as potentially it could make things worse. Sadly there is still such lack of education in the medical community when it comes to our condition. My doctor said there was risk of a perforated bowel if i have a colonic if there's endo on it as it would have weakened the lining, so I've erred on the side of caution and not had it. I also get severe pains in my hip, lower back and down my legs ( having a flare up now!)

Hopefully you'll hear about your lap soon. Have you called your consultant's secretary? There will be someone in their office who schedules the appointment so sometimes if you pester them it helps you get a date. I also got my GP to pester them as well and i got there in the end.

If low FODMAP isn't helping you might want to try something else, i was put on it for a while and it didn't help at all so I'm currently doing gluten-free (I'm already a vegetarian) with no eggs (they could be the culprit if you eat them alot). The only dairy I eat is grass-fed butter as it has a lot of nutrients. I'm eating a lot of greens (some high fodmaps) with lots of sulphur-rich and colourful fruits and veggies, low sugar and starch, low caffeine and alcohol. Make sure you eat enough high-quality fats to nourish your body (avocado, olives, extra virgin coconut and olive oil, etc.) I recommend you look at the Terry Wahls protocol diet and there's a great resource HealEndo which is this lady Katie, she's on Instagram and has a blog with that name. She has a brilliant e-book about endo belly with some incredible tips I would really recommend you check her out. She suffered from endo and has put herself in remission through diet and lifestyle changes.

Hope that helps.xxx