Endo and IBS symtoms

[Allie8]

I had a lap a few weeks ago and the doctor removed endo tissue from the back of my womb, he didn't tell me anything else about the 'stage' or how much there was. One of the persistent symptoms I have is an almost permanent swelling in the lower left hand side of my abdomen. In the past few years I have also had more trouble with my bowels - when I 'need to go', the sensation comes on very quickly and its extremely painful when I can feel the bowel movement moving through my stomach. I have had a flexible sigmoidoscopy so I know that everything within my bowels looks fine, so my doctor suggested that it may be symptoms of IBS as he said that from what he saw in the lap theres no explanation for the swelling on the left of my abdomen... Does anyone have any experience of having endo and IBS (when the endo isn't located on the bowel itself) ??

[weekari]

Was this an endo specialist surgeon?

It sounds like the endo in your pouch of Douglas? If you have a look at that in Google images, you can see clearly that it can easily affect the bowel. Especially when you get inflamed, which you will do with endo.

I have endo & a large fibroid (13cm)in my pouch of Douglas, it's a bit of of a mess in there. I have the same bowel type symptoms as you. I don't really get any build up to feeling like I need the toilet, it's just very sudden and very painful. One I've done the toilet, the pain reduces. But I always have a feeling like there's something 'up my bum' (there actually is though!). There are no real issues with my digestion. I'm very regular and it all seems normal. I was told I had ibs too but I don't think I do, I think it's this endo & fibroid putting pressure on things and causing inflammation. I did the ibs fodmaps diet and it didn't make any difference. I've seen a nutritionist and followed a gut healing diet which didn't improve things either.

Ibs is a diagnosis through exclusion of all other disease. I really don't see how they could exclude endo as being the cause of this.

[Allie8 in reply to weekari]

Thank you so much for responding that’s really interesting to hear. I don’t know if it was in the pouch of Douglas, he just said ‘back of the womb’. I know that that doctor is highly regarded for things to do with endo and he runs a clinic for chronic and undiagnosed pelvic pain, so I was quite surprised that he didn’t tell me more specifics about what they found.

Have they removed all your endo? And did the symptoms change after that if they did?

Yeah it just doesn’t seem like IBS to me, i do somewhat monitor my symptoms and it doesn’t seem to relate to food, and my diet is quite in line with the IBS diets anyway.

[weekari in reply to Allie8]

I'm having a bit of a nightmare with my endo diagnosis. It's complex and I'm fighting to be seen by a specialist. I had a lap by a general gynae 2 years ago and nothing was found. But I had an mri earlier this year through orthopaedics and I was diagnosed with severe endo. I was referred back to the same general gynae and I've since realised he is not informed enough to treat me. I've had another mri and a ct scan and it's a bit of a mess in there but I still can't get a proper answer because I'm still just being seen by the general gynae.

There are guidelines (Called NICE guidelines) for how endo should be investigated and managed, which isn't often kept to, it certainly wasn't in my case. It's worth your while finding out about your surgeons experience, just so you know whether to trust their opinion. You can call the gynae secretary and ask or you can check the bsge (the regulating body for surgeons who specialise in endo) website, if your surgeon specialises in endo, they should be on that. You just click on the map under the endo centres.

It seems like a pain but you really don't want to just leave things. I did and I regret it.

X

[Allie8 in reply to weekari]

Thank you that’s really useful,

Sounds like you are having a bit of a nightmare with everything, best of luck with it all! Xx

[Chidders]

Hi, yes I do too! Mine is mainly in the pouch of douglas area too. I had colonoscopys and endoscopys and all came back clear, so i have been diagnosed with ibs. I have followed a low fod map diet and this has helped massively. Ask your doctor if you can be referred to a dietitian maybe? Hope this helps

[Allie8 in reply to Chidders]

Ahh I need to find out if mine is in the pouch of Douglas because a lot of people with similar symptoms say that, I’ve been looking at the fod map diet so will give it a go, thanks x

[Mermaid-Galaxy88]

Hey! I've got IBS I was diagnosed with it before my endo..But I get the pain..it comes on very quickly..sometimes I've had to crawl to the loo because the pain is so bad.. but once I've been the pain goes..Also not to have TMI but one day it can be like I've got a really bad belly..and the next it can be like trying to give birth..I haven't yet found anything to help me with this..Hope you feel better xx

[Allie8 in reply to Mermaid-Galaxy88]

Yes that’s the same as me, the sudden surge of pain is so hard to manage, I get scared to go out if I don’t know where the nearest loo is! Thanks xx