Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Endometriosis affecting bladder

by B Kaur
(Solihull, U.K.)

Because of endometriosis I feel extremely tired all of a sudden, so that one minute I'm fine, and the next I find myself asleep on the couch.

My pain comes before and during my period, but it will not always be as severe as it can be. I have bouts of dizziness, when i think I have done too much, or sometimes when I have a bowel movement. The latter of this occurence is getting more and more regular.

My period pain can get very severe, to the point that I have felt that blacking out would be a mercy. I have come to dread the run up to my periods.

I recently had a laparoscopy, where the gaenecologist found that I had stage 4 endometriosis, which has enveloped my bowel, but I am now experiencing discomfort when I need to pass water and afterwards too.

I drink lots, yet pass water very little. Has the endometriosis grown to affect my bladder, too?


Name: Anonymous

Title: Opposite problem for me :-(

Hi there,
I am 29 and have just been diagnosed with endometriosis and IBS.

I have suffered with this since I was 15 and was always too embarrassed to tell the doctor about it. I finally talked to my doctor about this in May this year and have finally been listened to.

My biggest and most embarrassing symptom was and still is urinating at night-time in my sleep, (essentially wetting the bed) but never feeling it until it was over and essentially too late.

I am now on 1 tablet every morning for this and 2 tablets at night which work great until I get my period, then they don't work at all for the duration of my period and for 2 days after my period ends.

The second main symptom I had was very bad period pain which made me miss a lot of school, then work as i got older. My family thought, and still think that I was just being lazy and a loser.

The third issue I have is never been able to hold down a job for very long due to the severe fatigue which I still have.

The fourth and most debilitating symptom throughout my life has been depression. I have tried every tablet on the market at this stage and nothing seems to really!! help. I have tried talking to people over the years, have blamed myself and everyone else for my depression over the years, and now finally I see this site and it makes me feel a little better knowing that it is a symptom of endometriosis.

In the last 2 years I have suffered with IBS which has been horrible.. I too have, and still do suffer with dizziness, flushes and severe headaches during and after a bowel movement or even the attempted bowel movements.

Currently I am not receiving treatment for this. The hospital have to decide what treatments I will be getting for all of the above symptoms, and also for my severe shoulder and lower back pain.

I feel absolutely horrible, disgusting and have constant pain because of endometriosis. It has completely ruined my life but I do feel slightly better after finding this Site. I am now a little more hopeful that there might be a treatment or treatments that may work for me.

Thank you for reading this post and any advice would be gratefully appreciated.

Name: Anonymous

Title: Problems with bladder with endometriosis?

I too was diagnosed with endometriosis when I was 18. I'm now 34. I have been on all different kinds of birth control but most of them make me bleed constantly or just feel very ill. For the past year I've been on Sprintec and had been feeling better than I had in years.

Almost no pain with my periods, which was great. Recently, though, I've been getting UTIs, feeling the urge to urinate and urinating frequently. I'm seeing a urologist who says I am retaining urine for some reason. I'm sceduled for a cystoscopy in July. I feel like I'm being passed from doctor to doctor without any help.

I feel like it's taking over my life. My periods are horrible again. I just want my life back. Has anyone else had problems like this with endometriosis?

Name: Anonymous

Title: Fighting Endometriosis

I am so sorry to hear about your story. I just was released from my local hospital afer learning that my endometriosis has also enveloped my bladder. I've been struggling with endo for 15 years and have had numerous procedures, hormonal treatments, and taken every birth control on the planet for potential relief.

The doctors have been relunctant to do a hysterectomy due to my young age and the liability of my wanting to have additional children during my life (I managed to have one child and that is more than enough of a blessing). After all my years of struggling, I have finally found a doctor who is ready to do the hysterectomy so I can find relief and return to doing the things in my life that I enjoy but have been too sick or tired to do for so long.

A major side effect of dealing with endometriosis is the emotional toll it takes on you: depression and anxiety begin to creep in as quality of life depreciates. I hope that we all get the relief we are looking for and continue to fight a dibilitating condition that effects so many strong women!

Name: Anonymous

Title: I had the same problem with my bladder

I just wanted to say that I have stage 4 endometriosis and I too experience feelings of hotness after having a bowel movement. Also when I have passed urine it's like a fever and sickness but the endometriosis had grown on the bowel and bladder, so hopefully that is what it has done to you and not grown into the organs.

I also get dizzy and and feel very sick after a bowel and bladder movement and do not pass much urine, but I do find I pass more urine after I have a bowel movement, or the next day it's as if when my bowel is full I can not pee.

I don't know if this is what is happening to you. I was also holding a lot of fluid so my doctor gave me a prescription drug that helped to release the fluid better and was able to pass urine a bit more. All the best Teresa

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