Endometriosis story

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

Symptoms not taken seriously - often misdiagnosed

by Carol
(Plano, Texas, USA)

I had a hysterectomy, oophorectomy and removal of many egg-sized cysts associated with endometriosis For years I have complained of severe "tailbone pain" even though two years before the hysterectomy the coxis was removed because the doctor said it was "diseased" without further delving into his term "diseased". He just dismissed it.

It has been 30 years now, and I still have recurring symptoms every few weeks in the tailbone that feels like a "twisting", intense pain.

It comes on slowly and then builds and builds until I am in a fetal position and moaning, then goes away suddenly, leaving me with a feeling of, "huh - what was that all about" - no pain. It usually has a duration of 30-45 minutes.

I have spinal arthritis, and have had surgeries to repair disks in my back by means of rods, screws and fusing, but even that doctor cannot explain the strange symptoms with my tail-bone.

I have sciatica and arthritis in my hips and lower back (so they tell me), but still I cannot find out about the tail-bone symptoms. One doctor says, "Oh it's just haemorrhoids", another says "I think you need to see a psychologist" ...

I am frustrated to the point of just staying off pain medications for all the arthritis symptoms and not going to a doctor at all, even though I suspect something IS wrong that is all connected somehow. I'm just tired of being told it's in my head.

I'm afraid to tell them now that even though I've had a hysterectomy, I have pains in my lower abdomen and sides as though I have ovaries once again.

I'm afraid to tell them that I cannot have normal bowel movements any more because something feels "blocked" inside - when I tried, they said "oh, it's just haemorrhoids" (without looking).

... and I'm so tired.


Name: Anonymous

Title: You are not alone!

My advise would be to see a colorectal surgeon you probably have endometriosis on your colon or intestines. One thing they don't tell you is taking out your uterus and ovaries does not stop endometriosis from growing on your other organs that may have been affected.

I am having the same problem and I was told after my surgery that I still had the lesions on my colon so now I am seeing a surgeon to find out if the bastard is back.

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