Endometriosis story

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

Adhesions fibroids and cysts

by Dona

I have been told I have endometriosis, this was 19 months ago, have had three internal scans, three ultrasounds, a colonoscopy, and an mri, have to go for a urology test.

I have received no treatment, just lots of embarrassing tests. I originally went to my doctors because I was having urine incontinence the week or two before my period, probably around the time of ovulation.

Still have the same problem. At a few meetings with different consultants, of which I was told I had endometriosis adhesions on my bowel & bladder. I had fibroids and three large cysts on my ovaries, that they would do a full hysterectomy and might remove part of my bowel and bladder.

I really did not think of any of my symptoms as I put this down to being a woman, just hit 40 and having children. Up until recently I only had heavy periods and a bit of soreness during intercourse.

But now, 19 months on, I have a sore lower back, feels like it is going to snap in two, severe aching between my shoulder blades and collar bone, swelling of my stomach so that i might be two sizes bigger in the evening than from the morning, trapped wind which hurts when I breathe, sit or stand, painful bowel movements and passing of urine.

I also have a sore right breast and stabbing sensation in my pelvic area. These symptoms have only just started to get worse over the last three months and have been told my urology test will be end of oct, and it will be another six months before I have a laparoscopy so they can have a look to see what is happening in there.

I still have all the original symptoms and no treatment. All I can say is as well as it is nothing serious.



Name: Anonymous

Title: Need answers

I would like to know if anyone has had these symptoms or if they could pertain to endometriosis.

I went to have a colonoscopy and the minute they tried to do it i screamed in agony. The doctor said there is scar tissue up there and he could not get by it, so the procedure was cancelled. Next they sent me for a barium test, again i screamed in agony and it was cancelled.

Now they are going to put me out and a surgeon is going to see if she can tell me what is going on. Also I am booked for an MRI on Oct 14 to see if that will tell us what is going on.

I am 74 years old, no pain but a lot of bloating at times. Sometimes I feel I really need to have to urinate in a hurry and when I get there it is but a half cup full, something must be pressing on the kidneys to make this happen.

I have been over six months now trying to find out what is going on there.

Has anyone else had this experience and if so what conclusion has the medical profession come to, I would really like to know if this could maybe endometriosis.

Name: Crash

Title: Have felt pressure on everything in abdomen for long time

I have MS and now been told that I have endometriosis. I have had my colon removed because it was a dead organ, it was removed full. I had complications during that surgery.

I have an indwelling Foley Catheter which I have already talked to a doctor about building a new bladder, it will be like an ostomy but it's called a urostomy and the plans have been made.

Now I was diagnosed with this and have been told they would also handle this too. I have felt pain and pressure from this especially on my small intestines for a very long time now. I haven't felt right for so long maybe about 2 yrs because I couldn't put up my Christmas Tree without help.

The year before hardly anything was done for the holiday because I was in such agony and not feeling well. Now I know why. I've had this all that time and I"m praying that somehow they can remove all this from inside of me because I've been through so much in my life already physically.

I am 56 yrs old, was pregnant but it was a tubular pregnancy so had to terminate it, but my periods were always a problem and were dark with a lot of clotting and such.

I pray that this horrible disease can be taken care of. God Bless everyone who has to battle this.

Name: Anonymous

Title: Name: Pressure and pain in pelvic floor.

First I had urinary problems ending up having bladder hydrodistension because bladder was vey small and stiff. Found out I have chronic bladder disease,(Interstisial Cystitis).

After having that done I have been having chronic pain in pelvic floor. Hurts to sit, stand and walk. I feel like I am 9 months pregnant and going to deliver any moment, thats the pressure I feel.

Do not have any cramping. Hurts after I urinate, after I have a bowel movement and after sex. The only female organ I have left is my RT ovary. Had a pelvic ultrasound. Showed a cysts on LT side where my ovary used to be.

Gynaecologist said she does't think this is causing my pain and wants me to wait 6 weeks and come back to see if cyst is gone.

I cannot work because of the symptoms and now I am taking Morphine. Anyone with similar symptoms please help, I am getting desperate for answers. I know I'm not crazy. I know my body.

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