Bowel flare up

[19GilmoreGirl]

Hi everyone

Had another flare up last night woke with strong tummy ache knew straight away I was going to end up on loo.

Literally sat there for 20 mins going from normalish then absolute diarrhoea then had stomach cramps for around an hour I take buscopan as I’ve been told for years it’s IBS but with having severe Endo I’m really not sure anymore.

Does anyone else get bowel flare ups like this ? I’m not on my period so not linked to that.

I am so fed up the not knowing what the cause is if it’s my bowels due to IBS or whether Endo has reached my bowels? when I had my Lap in 2002 there wasn’t any on my bowels but who knows now.

Waiting for Gynaecologist appointment and Gastro.

Hope everyone is doing ok xx

[Jaye75]

I'm awaiting diagnostic surgery for bowel and bladder endo, I get a lot of pain in my colon right side that goes deep into my back right side I also get a lot of kidney area pain this is a daily occurrence i suffer constipation and at times i get shooting pains up my bottom they stun me to a halt, I bleed from bottom while on period only, I get a lot of bladder symptoms also....I just thought I'd share my symptoms as they highly suspect it with me but everyone is different

[Margaret55]

Hi I was diagnosed with endro at 19! So suffered many ops but now I’m 49 it’s bk with reverence. I was treated for IBS for nearly two years before another transferral to see the gynaecologist. I just needed to know why I was having these bouts on and off the toilet in excruciating pain. After a lap with varies removals, I was diagnosed with stage 4 and it had penetrated my bowel with practically sticking most of my insides together. I’ve now surgery to face again when I can not tolerate the pain any longer. It is well worth speaking to your doctor about your concerns sooner rather than later.

I do hope this helps. Take care

[19GilmoreGirl in reply to Margaret55]

Hi yes I was diagnosed at 19 after having a laparoscopy due to excruciating heavy periods although I was told it was severe it hadn’t reached my bowel.

I am wondering if that’s the cause of the flare ups but who knows the hospital finally rang me today with my appointment to see the Endo doctor at the end of this month so I’m really hoping to get some answers.

I see a lot of women have had MRI scans to determine whether Endo has reached the bowel and other areas.

Thank you so much for your info xx

[Kricam78]

Hi GilmoreGirl, I was wondering if you have gotten anywhere with your Gynae and Gastro investigations and whether they've found your IBS issues are caused by bowel endo?

I was diagnosed with endometriosos/adenomyosis and cysts around 3 years ago after pain in my left pelvic area (not diagnosed via lap though). I've taken the pill and also have a coil fitted to try an stop it in its tracks but I started to develop bleeding from my bowel when on a period and then other bowel symptoms which culminated in 2 periods of diarrhoea lasting a week each time with bleeding and terrible stomach cramps.

I had a colonoscopy yesterday for suspected IBD (Crohns/Colitis) but the bowel appeared normal - they did find though that my bowel was stuck to my pelvis. I suspect that pain I also have under my ribs is because it is also stuck there so I'm interested to see how you've gotten on.

[19GilmoreGirl in reply to Kricam78]

Hi Krista3972 my Endo doctor was fab listened and booked me in for scan but unfortunately I’m still waiting for that due to Gynaecology still trying to catch up !

I had a Flexible sigmoidoscopy a couple of weeks ago, well I say had, they attempted to they got so far and the pain was so excruciating I had to tel them to stop so I got no results from that.

My pain threshold is quite high I’ve given birth with no pain relief but that pain was unbelievable so I’m guessing it could be due to Endo possibly being on my bowel but until I have scans or another laparoscopy I still don’t know 😔

[Kricam78 in reply to 19GilmoreGirl]

Ah I'm sorry you haven't been able find anything much out. Unfortunately everything is taking much longer with covid around.

I literally feel your pain when it comes to the endoscopy. I wasn't too nervous because I'd been told that with sedation all you feel is pressure. That was so not the case! I was in massive pain, I had to have gas and air and more painkillers. If they'd have asked me if I wanted to stop I think I would've said yes but the doctor just persisted and moved quickly. I think ordinarily your bowel would flex to allow the cam through but seems like both mine and yours is stuck fast!

[19GilmoreGirl in reply to Kricam78]

I wasn’t offered sedation so had just gas and air but that didn’t help at all the pain was to the point of me screaming they tried moving me onto my back to continue but I just couldn’t.

I was so upset as I wanted answers I have had a change in my bowels and a fissure since October 2019 constipation has been the main problem causing the fissure to keep opening as I have bleeding and bowel change they wanted to do Flexi Sig to rule anything else out.

What’s the next step for you as your bowel looked normal on your Colonoscopy?

It’s frustrating as I just want answers but things can only move as quick as they are I was tempted to get a price for a private scan.

[Kricam78 in reply to 19GilmoreGirl]

I can't understand why they didn't offer you sedation. I thought that was standard practice. I had sedation and painkillers to start and then when the pain became unbearable they gave more painkillers and gas and air. No wonder you couldn't continue your poor thing.

They took biopsies during the scope so I have to wait a week for the results to rule out IBD for certain. I then plan on contacting my GP and asking for a referral to an endo specialist - I feel an MRI or lap should be the next steps. I imagine I'll be waiting some time for those though.

The pain I can cope with but the issues with my digestive system stop me in my tracks when they're flaring. Have they told you what thee next step is for you?

[19GilmoreGirl in reply to Kricam78]

It was stated on the appointment letter that I shouldn’t need sedation and it’s quicker for the hospital if people don’t have it as they can get you out quicker after I had it and was so upset they then said why didn’t you opt for sedation if you couldn’t cope with the pain ??! I told them because it was obvious you preferred patients not to !

I would say 100% ask to be referred to see Endo specialist but unfortunately it will be the case of waiting.

They have referred me to have a CTC abut I’m guessing I’m going to be in pain with the prep for that so I’m unsure what to do for best.

I just want my scans done with Gynaecology to see if they can see anything first.

I hope things move quicker for you x

[Kricam78 in reply to 19GilmoreGirl]

Yeah I got that impression from the hospital too, that they would be happier for patients not to have the sedation but I'd heard horror stories from colleagues so I told them I wanted everything they could offer me! It's not really consolation but I think even if you'd have had sedation, like me you would have been in real pain and still may not have been able to complete the procedure.

Good luck with whatever scans/investigations you have. I hope you get the answers you need sooner rather than later x