Bowel Bleeding - being passed between gynae and gastro

[Hotwaterbottle2]

Hi All,

I have had a very long and emotional journey, starting about 17 years ago when I was 15 with 4 week long very heavy periods and then 1 week off, fatigue, abdominal, back and leg pain, along with a lot of bleeding from my bowel. I keep being passed between gastro and gynae with both saying it's not us I'll refer you to the other one and I wondered if anyone had experienced the same?

Investigations:

10 years ago - colonoscopy and endoscopy - clear - decided it was IBS and referred to gynae

7 years ago - laparoscopy - clear – put in mirena - nothing to diagnose and so decided it was chronic fatigue

I had about a year of improved symptoms but then it all got terrible again, forced me to change careers and has prevented us starting a family due to the pain and fatigue and so I was referred back to both gastro and gynae

3 years ago – ovarian cyst, long bleeds and bowel bleeding again and decided mirena coil seemed to have stopped working/being effective and so they changed this while I waited for the consultant appointments and added cerazette pill and nortriptyline on top which reduced both the period and bowel bleeding

2 years ago - sigmoidoscopy - clear - referred to gynae

1 year ago - laparoscopy – two visible lesions between uterus and bowel which contained microscopic endometriosis but the consultant said it was so small it didn't explain the bowel bleeding – referred back to gastro

2 months ago - colonoscopy - clear and they said if it was bowel endometriosis and on the other side of the bowel it would have been seen on laparoscopy and that I should just put up with the bowel bleeding

next month - sigmoidoscopy (as they couldn't completely see everything on the colonoscopy)

I have my follow up telephone appointment on Friday with gynae after the laparoscopy and so wanted to get some advice on the next steps as I am not very good at advocating for myself and can't just keep going backwards and forwards – the bleeding and pain must be coming from somewhere. Every time the consultants don’t listen to my symptoms and never seem aware of my previous journey/investigations and just refer me back to the other or GP.

I was thinking of asking for an MRI – but does the laparoscopy trump that? Has anyone had a similar experience or advice on next steps? What I am not too sure of as well is that the bowel bleeding always seemed to correlate with my period, but since having the new mirena my periods have stopped but the bowel bleeding continues – is this possible if it is bowel endometriosis? Gastro say it’s likely to just be anal bleeding, but it doesn’t hurt at the base and there are no tears or hemorrhoids – it’s a full heavy feeling in my stomach and on the left hand side when the bleeding occurs and so it doesn’t make sense.

Sorry if that was really muddled – but thank you for any of your thoughts/experiences x

[Coralfloral]

Hi, I’m really sorry to hear how much you’ve been suffering and been passed around. I don’t have any advice I’m afraid but wanted to comment to say I’ve also been struggling to get a diagnosis for my bowel bleeding. It’s been happening for years and usually correlates with my periods, but I have found that sometimes I do bleed other times too. I understand what you mean about that full heavy feeling you describe in your stomach. My gynaecologist told me there’s no way it could be bowel endo because endometrial tissue doesn’t grow in the bowel (which is contrary to information I found online). My laparoscopy found bowel adhesions and small patches of endometriosis in the pelvic area, and the surgeon told me the adhesions were probably due to inflammation from Crohn’s disease (news to me!). I was referred to gastroenterology and provided a stool sample and they said it was entirely normal, I didn’t have IBD and instead probably had IBS and that the bleeding was because of tearing. It does feel like no one really listens and I also feel like I’ve been passed around a bit. I know I need to go back to my GP and pursue it again but it does feel like a losing battle trying to get somewhere with it. I would say push for an MRI - it can’t hurt to try another means of diagnosis. Have you been dealing with an endometriosis specialist or gynaecologist? Perhaps you could try to get referred to a endometriosis specialist centre instead? Xx

[lisatf2004]

hi yes u had endometriosis on the bowel it was covered and discovered by laparospic surgery I bled from the bowel mostly when on my period but sometimes outwith its tough when it isn't discovered etc and a long process hope you get answers

[Annnaaa]

Hey lovely, I also am going through the exact same thing as you, every symptom and every scan, I know I need another lap but it’s the fight to get one, I am currently on a bowel study so I suggest getting in contact with gyne and ensuring you get a lap to see what it going on as my endo doesn’t show up on any scans including a MRI only through lap.

Xx

[Roobs33]

heya,

I’m so sorry you’re not getting any answers for what’s going on. I have stage 4 Endo and my bowel is tethered to my uterus in two places. They discovered this during a laparoscopy but because of the angle they weren’t able to see the extent of it. I was then sent for an MRI which showed where abouts it was attached and also how deep into the bowel. I am currently pregnant through IVF but before this I experienced bleeding from my bowel about a day or two before my period actually started. I’ve been recommended to have a bowel shave/resection at some point in the future which I’m terrified to have.

I think definitely request an MRI. That should hopefully give them a better picture of what’s happening with the bowel. I really hope you get the answers and help you need going forward.

Xx