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Endometriosis UK
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Is it in my head?

Ok so in 2016 they found mild endo on bowel, bladder, pouch of Douglas and adhesions on right ovary. In the past 6-8 months I gradually found it hard to pass a stool. Now I have to use a suppository just to actually get the stool out. The stool can range from hard to very lose. I was Slimmingworld diet for almost a year and with all the vegetables n fruit still didn’t help. I take zapain for the pain, but take laxido to counteract the effects of the tablets.

I get constant feeling like I have a full bowel, that I really need a poop! I take a suppository but nothing comes out half the time. I can’t remember the last I had a natural urge to deficat.. does anyone else suffer like I do?

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Hey, were you seen at a bsge accredited endo centre or general gynae? It sounds like to your bowel endo has progressed and if you aren't already you need to be under the care of a bsge centre. You may want to think about new hormone treatments or potentially start considering surgery options though that's not with out risk it's potentially better than endo penetrating inside your bowel wall.

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General gynea. They said they lasered off what they sore and left me x

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Then you definitely need to be seen in bsge centre. General gynae should not be treating bowel endo under their NHS contract as it needs a multi disciplinary team involved including a colorectal surgeon. They should have referred you on but this often doesn't happen. You are eligible for bsge treatment also because your endo is refractory, that is it has come back after treatment. Your GP can refer you directly, no need to go back to old gynecology consultant.

Find your nearest bsge centre

bsge.org.uk/centre/

The treatment pathway for infiltrating endo, and rationale for bsge referral

google.co.uk/url?sa=t&sourc...

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Would I need another lap to prove it’s come back? They told me when I had the opp it’s far to ‘mild’ to be the cause of my pain and that WONT be having any more operations x

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Ive no idea, but if your bowel symptoms are worse that suggests your bowel endo type (which may be a different type to mild pelvic superficial endo) may have progressed and not be so 'mild' anymore, or it's possible your first gynae underestimated it as endo can be hard to see in all stages.

When I re referred myself I had an mri and ultrasound first then a consult and then a sigmoidoscopy to check there was no endo or other problem inside my bowel already.

I would request all your notes from your prior operation from the secretary too to find out what exactly they found and treated and what they left.

In my case my rv endo was already very advanced and a significant sized nodule as I was diagnosed late, so that meant my surgery was major and I came close to it going all the way through my bowel wall and needing a bowel resection. So I'd say best to get under bsge care sooner rather than later and be on the safe side xx

PS it's also total rubbish that mild endo can't cause severe pain, and they shouldn't have said that. it's well documented that extent of endo and pain levels do not necessarily correlate. If just one small bit of endo happens to be interfering with a nerve then an awful lot of pain can result.

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PPS this description of rv endo may be of interest endopaedia.info/subtype14.html

PPPS most definitely not in your head!! xx

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Hi.

You need to get refered to a BSGE CENTRE, As already mentioned by starry.

I had very similar issues, my bowel has always been an issue since the start of my journey, the hospital initially thought I had chrones.

I was similar to the fact I was told I was treated by general gyne, has to removed from pelvic area, but that it wasn't on my bowel.

I knew myself that my bowel was an issue, and asked to be refereed to a BSGE centre.

They have been brilliant. I have had another lapo, as they wanted to see damage, and 2 MRIS, and I wish I had gone earlier, I know waiting for a full pelvic clearance, bowel reconstruction, I have a nodule in virginal passage, and endo on the muscle in wall, and it's spread close to my rectum, and on discs of spine. I've been told I should have been refereed by them general hospital straight, I now have a long year ahead of me.

Get refereed.. The best of luck

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Hi whenever I go to the loo I have massive pain bleeding dark hard stool and struggle to go most of the time 🤔 Some of those symptoms maybe caused by other stuff as I've had weight loss and gastro problems but because I've had bleeding my endo specialist says it might be best if I have a colonscopy to see if its travelled into my bowel 😮 I would definetly see a specialist they might suggest that for you 😮

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