bowel endometriosis/pouch of Douglas/IBS

[MayM95]

anyone who has endometriosis on the bowel/Pouch of Douglas/IBS, I’ve been getting stomach pain recently that is really painful and uncomfortable. It will start one side of my stomach, like the far right, and then move to the other side, then it might just be across my stomach, like a tight twisting pain, so it’s a little strange to me, because when I do get stomach pain, it’s usually focused in one area. I then have to rush to the loo 2/3 times, but not necessarily a bad bowel movement, just more than once and with a lot of urgency. I know this is super specific, but it’s not something I’ve really had before, so just wondering if anyone else experienced the same thing??

[Fizzypoptastic]

Hi there,

I have stage 4 endo in my POD. I’ve had surgery just over 3 weeks ago now but that was to remove an endometrioma, right fallopian tube & adhesions. The plaque in POD was left as that is currently not causing awful side effects & I will require a MDT present to operate.

I have IBS like symptoms where I have to go to the loo 3 times, gas, bloating etc. I also have a sharp pain in my rectum.

Before I was diagnosed with endo, my symptoms were alot worse. I had very painful bowel movements, blood from rectum. The bowel movements were so painful that I used to cry. The sharp needle like pain in rectum is also awful. Most of these side effects improved after I had the Mirena fitted a year ago. I had the Mirena replaced 3 weeks ago so have experienced pain in my rectum again, which I’m hoping will go away as I heal.

Please speak to someone about the pain you are experiencing. Are you awaiting surgery or under a specific gynae team? xx

[MayM95 in reply to Fizzypoptastic]

Hi, thank you for taking the time to respond to me, I really appreciate it. I have Stage 2 endo, but that was from 2019 when I last had surgery, so I’m seriously considering having more surgery as I don’t really know what state my endometriosis is in.

I suffer with painful bowel movements as well, so I really feel your pain!! I have mostly IBS symptoms, which is why it took so long to get diagnosed because for years, doctors were telling me it’s “just IBS”. I get trapped wind, bloating, cramps, diarrhoea/constipation, all of it.

I tried the Mirena coil but I didn’t get on with it unfortunately, it made my endometriosis symptoms a lot worse, so I had it taken out. I’m glad it’s helping you though, I know a few people that it’s really helped.

I’m going to start looking into seeing a gynaecologist or endo specialist privately just because of the waiting times for appointments and surgeries xx

[Fizzypoptastic in reply to MayM95]

No problem at all. I think expressing what you’re going through really helps.

Going private is a good idea as I had to wait two years for my surgery.

I’m looking into private healthcare too.

Good luck with whatever you decide to do. xx

[R_elep]

Hi! Just reaching out as prior to my surgery (I had stage 4 endo with bowel involvement), that was really similar to what I experienced.

I remember being really baffled by it as the pain literally started on one side then the other side and the whole time it felt like my abdomen was being twisted (a bit like wringing both ends of a towel). I didn’t have huge urgency to go to the loo, but when I did it often hurt.

Hope this helps x

[MayM95 in reply to R_elep]

Hi, thanks for reaching out! Oh my god yes that’s exactly what mine is like, you’ve described it perfectly! It’s not even that painful sometimes (I’ve had a lot worse pain), but it’s super uncomfortable and it always makes me feel so uneasy, like what’s going on in my stomach..

[R_elep]

No problem! I know how scary it can feel not knowing what’s going on and how it can be helpful to know if others have similar symptoms! I felt exactly the same when it happened as it was so unlike any other type of sensation - so knotty! X

[myuser]

Hi,

I have similar experiences. A few years ago it was so excruciating for about 20 minutes as it moved. When it happened it was usually in the morning after waking and I would be standing. I had to brace myself - usually hold onto the kitchen worktop and wait for it to pass, and then i would have a bowel movement. I guess it hits a nerve and/or the endo and there’s not enough space for it all!

I have resolved the extreme pain in two key ways:

Abdominal massage every morning and evening ( in a specific way) I visited a local Arvigo abdominal masseuse (North west UK) who taught me how to massage my belly and it works wonders! It was well worth the money.

Plus eat wholesome food …and a gluten free diet helped me.

Best wishes