Is anyone suffering from severe endometri... - Endometriosis UK

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Is anyone suffering from severe endometriosis having bladder and bowel problems as well?

Anvi profile image
Anvi
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Anvi profile image
Anvi
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25 Replies

I suffer from severe endometriosis and have recently had surgery that involved my bowel and bladder. What would you like to know?

Anvi profile image
Anvi in reply to

Hi, thks for the reply...do you feel better after your surgery now or is your problem still the same?

Brandy_0987 profile image
Brandy_0987 in reply to

What type of doctor did your bladder and bowel surgery to remove the endometriosis? gyno, urologist, etc?

helenkitty profile image
helenkitty

I have a pocket of endo behind my bladder. Everyday I need to wee every half hour, more so when I'm on. I can't go for a number 2 when it's that time of the month cos it hurts so much! All the other times I bleed. Not nice.

Anvi profile image
Anvi in reply tohelenkitty

Hi helenkitty, thks for your reply. I need to wee frequently as well....even if the bladder is not full but its hard to retain...do u feel the same? I also suffer from IBS and its really horrible with endo.

Ekmamtae profile image
Ekmamtae

Ah - yes :( Bad pain in my bladder before I pass water and at times I physically cannot pass water - I have been ambulanced in to a and e and catherterised before. Opening bowels can be agony, I literately cry! It also bleeds, sometimes heavily and have had clots in my stool too - these symptoms are horrible - I feel for you, I often feel I cannot cope x

Anvi profile image
Anvi in reply toEkmamtae

Hi Ekmamtae, thanks for your reply.I have been cathetherised twice before and had UTI following that. Do you think that the catheter has made the bladder worse? U right its so hard to cope and get on with everyday life. Big hug for you too.

helenkitty profile image
helenkitty

When I first started getting the symptoms, the doctors said that it's either an sti, uti and piles. Explained to them that I think it's the endo causing it but they fobbed me off. Wasn't until I started joining endo groups and talking to other people that what I and everyone else was experiencing was infact "normal" x

Anvi profile image
Anvi in reply tohelenkitty

I am actually being told that my bowel problems are due to IBS. Diet has not made big difference because the irregularities and pain still there. However during my last surgery, it was found that my bladder and bowels were all stuck and lots of adhesions.

EndoSister profile image
EndoSister

I have pain with Both and with a number 2 i bleed ALOT its so painful!

Anvi profile image
Anvi in reply toEndoSister

Hi Endosister, thanks for replying. Did your pain and other trouble start as soon as you were dignosed with endo? Have you had any surgery on both?

EndoSister profile image
EndoSister in reply toAnvi

It was before i found out i had Endo it started and yeah ive had 2 surgerys

Ekmamtae profile image
Ekmamtae

Ah Anvi! Yes the UTI'S that follow, had 3 after the last time, one so severe had to get down to the out of hours doc at 5 am - nightmare! Yes it seems it was a bit worse following my first lap, then much worse after the second - I used to be able to put off going to the loo a little while - but cannot now - it really hurts! How many laps you had? Hugs back at you too - Endo is sooo nasty! xx

Anvi profile image
Anvi in reply toEkmamtae

I have had 2 laparotomy which is like caesarean and 1 laparoscopy..waiting for another laparoscopy now...i feel z same as u as for the loo prob....its very embarassing...take cre x

Ekmamtae profile image
Ekmamtae

Ah :( ive now been referred to a colorectal specialist - have you seen one of these? x

Anvi profile image
Anvi in reply toEkmamtae

Yes I have been referred to the bowel specialist. have had gastroscopy and colonscopy as well, result was normal...they tried many stuff, diet and medications, nothing seemed to make any difference. Recently, I was told that they did as much as they could , and its the endo which is rsponsible for all the mess with bowel...so the situation remains the same,everyday is a battle, just carry on...

Brandy_0987 profile image
Brandy_0987 in reply toAnvi

Oh no! Do you have to get a hysterectomy?

lornam profile image
lornam

Hey folks,

Check out this website, he's my DR and is amazing. I had severe endo as high as under my ribs. I personally see him as a God as he gave me my life back.

He has some great info on his site including questions to ask you own Dr's to make sure you are getting the correct care.

He actually does really care and understands how we suffer. This is rare after seeing a huge number of consultants in the UK who all say it's in your head or it's impossible for endo to cause those sort of probs!

endometriosis-consultant.co...

Stay strong ladies and don't let the NHS fob you off xxx

claire-w profile image
claire-w

what surgery did you all have to the bladder i have endo on my bladder which they removed during my lap but gp thinks its also inside my bladder and am being refered for a cystoscopy to look but any idea on what they will do if they find it INSIDE my bladder??

bexxy123 profile image
bexxy123

yes i have such terrible problems i dont know what to do anymore

i know from my experiance that it attacks my bowel so bad that when i go to the toilet some of my womb tissue is present doctors dont believe me and i am so tired of it all ive given up trying to explain it to them anymore

Anvi profile image
Anvi in reply tobexxy123

Get a second opinion Bexxy 123 or change your doctor. You will be in better hands of an endo specialist.I know. frustrating and embarrassing as well as I get lots of gas and back passage hurts. My endo is just getting worse now. Lots of lower back and rectal pain. And a cyst in my pouch of Douglas.

Blend together fruits and veggies along with either water or 100 percent fruit juice drink that everyday. Also buy prune juice mixed with fiber (Metamucil/Benefiber) and drink everyday. Drink plenty water daily, at least 5 cups. I've had problems with using the bathroom as well. Once I was constipated for almost 3 weeks, I have Endo on my POD so using the bathroom was rough! When I was in the hospital for my Lap they gave me laxatives, it would work for that time, but afterwards I'll still be full of poop and bloated all over again. I had to naturally regulate my bowels by eating plenty fruits and veggies (blended or juiced) and mixing Fiber in Prune juice and drinking a cup everyday. Also sitting on the toilet calmly and waiting has helped me a ton. And now I poop every day, sometimes 2-3 times and it comes out smooth with no pain and I don't suffer from bloating anymore either. I would NOT suggest laxatives because it's only temporary relief and taking too much will mess up your tract and give you hemorrhoids. The best thing to do is to try to poop on your own without help of those awful laxatives. Even though I still have Endo, but the other symptoms are gone (bloating, constipation, lower back pain, gas) God is good.

sunflower858 profile image
sunflower858 in reply to

OMG! You are heaven sent. I've been having the same problems. I have been feeling dehydrated for a while, constipated, cramps all the time even when I'm not on my.cycle, pain on my right side constantly and im so tired of taking laxatives and pain medication. I was scared all the time to eat.because I knew in order for me to have a bowel movement I needed to take a laxatives. I would feel so full and would take me about a week or two to go to move my bowels. I felt better when I was.on the NuVaring Ring. I even lost weight and now I look sort of anorexic with dark circles under my eyes. But I will definitely be trying your recipe and I love smoorhies. I just hope it works. I was diagnosed with endometriosis, ovarian cysts and I just want some sleep, stop the backaches, long heavy and painful periods, to be able to eat and work a job. I dont mean to babble but I'm tired of crying and not being able to participate in my children's school activities. ...thank you so much.....

Anvi profile image
Anvi

Thanks /kawaiinewnew

I actually get more "loose"bowels(2 to 3 times a day) than constipation and I cannot hold myself for long. If I need to go then I need to go! It's the same for my bladder, cannot hold for long!

nooniesue profile image
nooniesue in reply toAnvi

Same here. Extreme urgency when I have to pee and I barely make it most of the time. When it hits, it hits and it's not even that much usually.

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