Endometriosis – the pain, the frustration, and the mystery

It's a night I will always remember. I was out with some friends when suddenly, I had unbearable pelvic pain - it was so horrible, I was doubled over. I thought I was just having extreme cramps. I soon learned I had severe endometriosis. Nearly 20 years and five surgeries later, I still suffer from this relentless and debilitating disease.

The pain can be excruciating - so much so that this spring when I was driving my car, I was gripping the steering wheel as hard as I could, screaming, and fighting back the tears and fear. It felt like something was bursting inside of me. Through the years, it has hurt so bad that I've had to stay home from work because I couldn't get out of bed. Surgeries have revealed adhesions on my bladder, colon, and ovaries, and implants on a ligament near some nerve fibers, which explains the horrendous pain.

The interesting thing is, anytime I mention endometriosis, like I did over here on my blog, I hear from so many other women who also have it, as well as from those who have never heard of it. It seems either way, not many people talk about it. But since discussing it may help someone, let's talk about it now.

What is endometriosis?
It's a condition where tissue that usually grows inside the uterus grows on the outside instead, most commonly on the ovaries, behind the uterus, on the bowels or bladder.

Basically, when a woman with endometriosis has her period, the tissue outside the uterus still acts like it normally would during a menstrual cycle: It thickens, breaks down and bleeds each month. Since it has no way to exit the body, the trapped blood may lead to cysts, scar tissue, and adhesions that can bind organs together.

About 2 to 10 percent of women in their reproductive years have endometriosis.

[Photo Credit: American College of Obstetricians and Gynecologists]

The main symptom of endometriosis is pelvic pain. You may have the pain during sex, bowel movements or when you urinate, or just before or during your menstrual cycle.

The odd thing is the amount of discomfort you have does not always reflect the severity of your condition. Some women who hurt just a little may have a severe case. Others who have a lot of pain may have a mild case. And many women with endometriosis don't have any symptoms at all. They may first find out that they have the condition if they can't get pregnant. About one-third of infertile women have endometriosis.


This is one of the most frustrating things about the disease. The cause is unknown.

Pain medications and hormones can often help, but severe cases may need surgery to burn off the implants and scar tissue. Surgery can relieve the pain, but as I've learned, it can come back again and again. A hysterectomy is an option if your pain is extreme and does not go away after treating it.

My last surgery was just last month. I chose to have another laparoscopy like the four I'd had in the past. So, now what? I guess all I can do is just hope this time, the endometriosis is gone for good.

If you want more information about endometriosis, there are a lot of links to great resources here on Medline Plus.

Sources: National Institute of Child Health and Human Development, American College of Obstetricians and Gynecologists, Mayo Clinic

Pain, pain, go away...

[Photo Credit: stock.xchng]