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Sandy’s Story (Endometriosis)

Endometriosis StoriesReading the endometriosis stories have brought back so many memories and realizations. Looking back, I have probably had endometriosis since I started menstruating. I don’t remember even one month without being doubled over in pain or embarrassing mishaps!

For four years, throughout high school, various doctors told me it was just part of being a woman. Even though my mom had a full hysterectomy in her early 30’s due to uterine cancer. I missed outrageous amounts of school, time with family and friends, and became depressed.

At age 19, I moved away from home and the pain continued. I began to see a new doctor who ordered an ultrasound. After being accused of a miraculous pregnancy and dishonesty during the test, a radiologist found that my right ovary was attached to the backside of my uterus among other various adhesions and cysts. I later had a laparoscopic surgery to ”burn” the areas and detach my ovary. I was then placed on a high daily dose of oral provera. Although my symptoms were reduced from the medication, I never felt ”right.”

I married 2 years later and within another 3 years we were ready for children. I was directed to stop the provera for at least 3 months prior to trying to conceive. During the fourth month, our doctor confirmed a positive pregnancy test. We were so excited! I was told that giving birth can often clear up the endometriosis.

I had cramping and spotting during the pregnancy and at almost 3 months, required a D&C due to a miscarriage. I cannot begin to explain the hurt, loss, and hopelessness I felt. It caused a rift between me and my husband because neither of us could communicate our feelings. Approximately 6 weeks later, I was pregnant again. What an emotional roller coaster!

I had morning sickness, spotting, dehydration, and several frantic doctors visits. In the end it was worth it and we were blessed with a beautiful healthy baby girl!

After a few months of bliss, the pain returned and I was placed back on oral provera. The pain gradually increased and when my daughter turned 3, I scheduled a visit with a local gynecologist. I felt like I was 15 again. He told me the endometriosis was minimal and basically to learn to live with the pain.

I normally would have turned this inward and blamed myself for being weak. This time I was a mom and knew something was not right. I went back to the specialist, now 2 hours away, that originally diagnosed me. I was scheduled for a hysterectomy a few weeks later.

It’s been 13 years since my hysterectomy. I still have bouts of tears, regret, and even pain from the scar tissue. I’ve always kept my feelings to myself and never truly understood this disease or even that it was a disease until I found your page.

Now I know it’s okay to feel loss and sadness, at the same time as feeling blessed for my daughter and life. Thank you!

Submitted 3-20-2012

The informational content of this article is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.

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  1. Andrea

    I had a hysterectomy at 36 which was just a few months ago. I have two children but we had thought about having more before I learned that I had a stage 1 endometrial cancer. It still brings me to tears thinking about pregnancy and babies.

  2. Jacquie

    My story began at the age of 11. My first surgery was at 15, again at 16 one at 17 and the one to place the reproductive organs back in place with wire at the age of 18. I had these surgeries in a military hospital in Bethesda, MD. ( Dad was retired Army)
    I was given little hope to ever have children. I was told ” If you conceive it needs to be within 18 months from the date of surgery your endometriosis is quite severe. If you conceive you may bleed to death at child birth”. At the age of 19 I married and in 2.5 months became pregnant. I gave birth to a Son.
    This was the ONLY time my endometriosis didn’t bother me.
    At the age of 25 after many years of nearly bleeding to death I was told to “have a complete hysterectomy or bleed out one day”. For the sake of my 5 year old Son I had the last surgery ( I thought).
    I have had regular scar tissue removal surgeries about every 5-7 years, these include repositioning the bladder, the bowel etc…

    I am terribly sorry for those with endometriosis.

    We are STRONG women to be sure. Now? Enters A.S.

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