Symptoms of endo on or near bowel? Please help :(

[Catness]

Hello everyone, hope you are having a good day pain-wise.

Ok background: so I have stage 3-4 extensive endo. Had a lap last July and I don't recall my consultant saying that I had endo on my bowel. I am now being referred to a specialist laparoscopic endo surgeon as my consultant has said she isn't trained enough to treat the severity of the disease and I need excision. Haven't heard from this new consultant yet.

For the last few months I have been getting increasing immobilising pains about 30 minutes before I need to have a bowel movement. The pain is such that I can't breath or move and it comes and goes in waves and feels like someone is poking me with a red hot poker up the bum and into my insides (sorry TMI I know, just trying to describe it accurately!)

Once it's actually 'time to go' it's ok as once the wave of pain has gone, I can have a bowel movement which itself isn't too painful, and the pain just disappears. I don't have any blood in to stools either. Sometimes when I am on really heavy I will get these poker pains without needing the loo and they come and go as they please.

Do you think this could be a sign of endo or something else? Either way I will of course discuss it with my new consultant but I was just wondering if anyone else experienced something like this?

Thanks xx

[beebop79]

I have exactly the same symptoms when I have to go for a number 2!! My consultant told me that it's the endo that flares up and causes pressure on your bowel, hence the pain, it's worse when the time of the month comes round. I've just had my 3rd lapro done and they've had to remove my right ovary because it was so riddled wit the endo they also laserd some off my bowel so I'm hoping this has now stopped my symptoms, hope everything goes ok for you. xx

[Catness in reply to beebop79]

Hi Beebop (love the name!)

Thank you for your reply! Well that's a relief that it's not just me! I keep imagining this conversation with my surgeon where I'm saying about red hot pokers up the rear and them looking at me like a mad woman!

I hope now that they have got rid of it that you have some relief. If

I get the waves at work I am stuffed as I have no warning, am locked with pain, and have to climb two stair cases! I will definitely inform my consultant an hopefully if there is anything there, they will be able to relieve some of it.

Thanks again xxxx

[beebop79 in reply to Catness]

Your more than welcome xx

[Hidden]

I'm exactly the same.... The shooting pains up the bum, are awful aren't they?

Do you also suffer with diarrhoea or/and constipation? I use to have both but now it's just constipation. (Golden linseeds are really working wonders for me at the moment!)

My bowel is stuck to my uterus and ovary. I am waiting for a laparoscopy to see the extent of damage to my bowel. I am then having a hysterectomy as I've have adenomyosis.

Best wishes.

X

[Catness in reply to Hidden]

Hello thank you for

Your reply. I don't tend to suffer with diarrhoea or constipation but my pain killers that I am

Having to take more and more make me constipated but I have a juicer and I have a fresh veg juice everyday and fresh pineapple juice too which helps a lot!

I'm sorry to hear about the extent of your endo :/ I hope they treat it as best they can to bring you some relief.

I dread to think what they are going to find inside me. Must try to stay positive but it's hard sometimes xxxx

[little_fins]

Yes yes this is me! Can I message you as some of the content is TMI unless you actually duffer from endo where we have it.

[Catness in reply to little_fins]

Yes of course

[Janeyd27 in reply to little_fins]

Can you tell me too as I just posted with lot of detail. Can't find anyone saying the same thing x

[Lillil]

Hello,

Think a lot of endo ladies suffer with this. I do! It hurts soooo much! Don't worry about tmi its the only way to explain it!

The surgeons thought i would have it on bowel, but was only found in pouch of douglas - this pain is common with this site.

Im currently waiting for my second lap as have these pains again, as well as severe shooting pains in rectum and feeling intense pressure in bowel.

I have been told it could be due to adhesions pulling or just because everything is so inflamed.

Good luckxxx

[Catness in reply to Lillil]

Thank you for your reply, I'm really surprised by how many people get this - it's awful best of luck for your second lap! XXx

[Lolaloo]

Hello I have been having these pains and yes I have endo on my bowel! They could only get the camera 20cm up as he said there was a sharp twist or kink where endo was on bowel. I'm having op to remove cyst and endo and also that part of bowel that has endo on it. Hope this helps and the shooting pains up the bum can be so bad and take my breath away x

[Catness in reply to Lolaloo]

I hope your op goes well you poor thing! I really hope I see my new consultant soon and get some relief! Last night and this morning was awful! xx

[KarenlovesKermit]

U poor thing, you've explained the pain very well as it is hard to explain to someone who doesn't suffer like we do. As well as that pain I have severe pain inside my vagina and in my right side (near my waist). A MRI showed that the endo is squashing my bowel and so there only a small opening in part of my bowel. My rectrum is stuck to my womb, a fallopion tube is blocked and cysts and fluid around ovaries. stage 4 endo. I suffer from severe constipation and I'm waiting to see the bowel consultant next....its an horrific diaease.xxx

[Bufdiz]

I had exactly the same! It was awful, exactly like you described. I had my first lap two weeks ago and they removed a large amount of endo in my pouch of douglas (the space between the bowel and vagina) which is why I think I had the pain. I really did find the pain awful, it was a hot hand was grabbing hold of my coccyx.. One thing that helps (apart from pain killers) is whilst watching television or lying in bed I would have a hot water bottle pressed against my lower back. Good luck with speaking to the consultant. x

[Bufdiz]

p.s - I would recommend getting some Laxido. (ask your doctor for it) it helps you go to the loo. I find it a life saver!

[wabbit]

I suffer this n sometimes part of the month have to squeeze it out lol. Afterwards i have stomach pain worse for a few mins bout 20mins then all eases.

Gynae yesterday told me this isnt a symptom of endo n must be ibs ffs! Im sooo annoyed. Its bad enough trying to explain but why is it all men that specialise in women??x

[Penelopeel in reply to wabbit]

Did you know lots of women are told they have IBS before finally getting the correct diagnosis of endo. That gynaecologist needs to get on this site and read what symptoms Endo sufferers have!!! I often think that as I read everyone’s complaints! Pity the doctors aren’t reading this as they would be better diagnosticians! I get so many miserable Bowel symptoms and pain in the rectum and coccyx is a major one. Then diarrhea 3 times a day with urgency. Yuck.

[1880emma]

I don’t know but I have exactly the same . The pain is so bad I can’t physically move or have to smash my fist into the wall etc . As soon as I’ve been it’s gone just like that .

I’m convinced I’m riddled with endo down there

[Ouch2020]

I also suffer with this and have been told it was Crohn's Disease, then IBS, then rectal spasm. It’s plain old endo being its charming misunderstood self as usual. Oh and yes poker up the bum is most accurate description as that is exactly how it feels!!