What is causing my rectal and pelvic pain... - Endometriosis UK

Endometriosis UK
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What is causing my rectal and pelvic pain when im not having periods?

Lillil
Lillil

Hi ladies,

Had my first op and diagnosed last year where i had endo in pouch of douglas ablated.

Had six months of zoladex last year that helped a lot then six months of depo which didnt help as much. Currently off everything but pain killers as drs seeing if side effects of joint pain caused by drugs.

Im getting severe rectal pain, scared of going to loo as either nearly pass out so dont finish going or get severe shooting pains in rectum after. Last night i looked like i was fitting jumping in bed in agony after going to loo. Im not constipated have a small

Tare and haemarroid for which i

use numbing suppositries and creams for.

Im also getting severe right hip pain to point of limping and crying walking up stairs. I cant put weight through right buttock.

Not there everyday.

Also severe low pelvic pressure type pain, whole pelvis aches and low back and side pain.

What causes all thispain when i havent had a period for a year because of medical menopause.

Xxx

12 Replies
oldestnewest
Hidden
Hidden

Hello.

I can not tell you what is causing your pains but can only tell you what is happening with me.

I've had Endo since 1991. I

had an MRI in december 2013 and amongst other things, it was discovered that my bowel, uterus and ovary are stuck together.

The symptoms that I have are severe bloating, nausea rectal pain (shooting up my bum like you describe), diarrhoea alternating with constipation. When I do need to have my bowels open I get escalating pelvic pain. And when I get these pains, they literally take my breath away.

I get these symptoms all through the months but they are so much worse when I have a period.

I found this interesting

centerforendometriosiscare....

I am having an examination called a flexible sigmoidoscopy in April. This is so they can look up my rectam and the first part of my colon, with a camera.

I do not know if I have Endo in the bowel or some other bowel problem going on.

I hope you soon get answers.

Best wishes,

Barbara x

Lillil
Lillil
in reply to Hidden

Thank you.

Ive watched the video, it was very interesting.

They thought I would have everything stuck together last time because of my symptoms, but all they found was mild endo in pouch of douglas. The only thing is i didnt have a specialist looking at me so maybe they missed something.

I worry they will find nothing on this lap as ive had so much treatment. I have to keep reminding myself feeling like this is not normal!

What i dont understand is what is actually causing the pain if we are not bleeding?

I hope you get some answers soon too xxx

Hidden
Hidden
in reply to Lillil

I think that we are in pain outside of bleeding because everything is inflamed and possibly affected by scar tissue (adhesions).

Adhesions do not respond to medications and even if you have surgery to remove the scarring, they usually develop again.

Endo irritates everything it comes in contact with. It really is a pain in the bum. For me that is literally too!

Hi I too have/had these same symptoms. It's caused by endo on rectum, pouch of douglas or uterosacral ligaments or all three. It causes the rectum to stick to things like vagina and pull both up out of place and therefore causing tears in the rectum. It's an ongoing domino effect, one thing always causes another with this disease. X

Hi. I also suffer pelvic pain when I am not having a period. I haven't had a period for a year now due to hormone treatment (Zoladex and Depo-Provera) but still get daily pelvic, back and a stabbing hip pain. AND awful bloating - I look 5 months pregnant first thing in the morning even! This week has been particularly bad for pain for some reason. I have severe stage 4 Endo in pouch of Douglas (obliteration of), sacra ligaments, ovaries and all that. I also alternate between constipation and loose bowels (wouldn't say always diarrhoea but have to go 3 or 4 times to empty - sorry for TMI!). Sometimes I don't even realise I need to go until I go for a wee and then it comes! Sorry again....Sometimes I have an aching in my right buttock and down my leg too. I am so fed up - my treatment was meant to help and it hasn't! x

PS. I also have adenomyosis which certainly doesn't help one bit!

Don't know how much of this is right but my gynecologist when I had my lap said that sometimes there are pockets of endo that are too small to remove but that can cause extreme pain, she said that as they are always there you can get pain all through the month because it's inflamed. Ps.... I also have the same when going to the toilet and didn't realise it was connected, explains a lot. Hope you get answers!!!xx

HiddenThis reply has been deleted
Rrl12345
Rrl12345
in reply to Hidden

thanks all of this rings true with me and I didn't even know there were specialist centres, I was bulldozed into having a general surgeon perform lap on me and god knows what he did in there as it certainly has not got any better but got worse, he has since retired and since then no one taking me seriously and just think I am paranoid about ovarian cancer instead and they put it all down to ibs. I am going to doctor next week and will mention this all again and see if he can help, should I ask to be referred to a specialist endo doc? when I say that he will prob say there aren't any! feel like head hitting brick wall constantly! thanks Lindle

HiddenThis reply has been deleted
Rrl12345
Rrl12345
in reply to Hidden

thanks so much new to this only used it once last year x

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