A Father Talks about Endometriosis

I remember the first indication we had. I was teaching computerized gamma spectroscopy to a group of chemists at the Sequoyah Nuclear plant training center when I got the message to call my wife at the doctor's office. She sounded horrible.

"Mike, Marie's pregnant!" She said through her sobs.

I was destroyed. I don't remember what happened the rest of the day. I somehow finished. Knowing the veracity of most laboratories for single point analysis, I purchased an EPT and had my daughter test herself, once that evening, and once the next day. Both were negative.

We saw the doctor that afternoon. He derided the EPT results saying the isotopic test was more accurate and the two tests they had run were positive. We explained how Marie had not had intercourse, ever. While he went out to reverify his tests, I scanned the titles on his bookcase. One, dealing with such problems, caught my eye. I scanned its index and flipped to the section on false pregnancy. Tumors or cysts can cause false positive.

When I ask the doctor about this, he insists that it cannot be either. We are scheduled for an ultrasound for the next day.

"This will tell us how far along she is." He claims.

The ultrasound shows no sign of a baby but does indicate a cyst on the right ovary. The doctor is unshaken.

"It must be too early to tell by ultrasound. I assure you your daughter is pregnant." He is so sure of himself.

We grill our daughter about possible sexual contacts. After several tearful hours we are convinced, she is telling the truth. The doctor isn't.

"She must be schizophrenic. She got pregnant during a psychotic episode."

For just a second, I almost believe, but no, it isn't possible, I can account for virtually every hour of her days for the last month or two.

"Doctor, I don't believe you. I believe Marie."

The next week she got her period, a perfectly normal period. The cramps seem harsh, but then, aren't they supposed to be?

The Doctor makes one last try, "Mrs. Ault", he says to my wife, "when will you believe she is pregnant?"

Months later, she is diagnosed with endometriosis. There are not one, but two cysts. No Doctor will gainsay the first one, something about professional ethics, or is it cowardice?

Endometriosis occurs when the lining of the uterus, the endometrium, is somehow introduced into the abdominal cavity. There are several theories as to how this happens, from menstrual reflux up the fallopian tubes to genetic predisposition to the condition. Each period causes the tissue to enflame and swell. It can cause severe pain, binding of tissues and organs to each other and the abdominal walls due to scar and ligature formation, and ultimately, sterility.

Yes, a period is an uncomfortable time for a woman, but it shouldn't put her down for three days. Please, if your wife, or daughter, or girlfriend has a rough time with her periods, have her get checked. The reason endometriosis is sometimes known as the career woman's disease is because it is usually found after a woman has had it so long, she cannot have children. Since career women put off children until the career is established, this results in severe internal damage. Quite a price to pay for a career.

I sometimes wonder if that first doctor had looked beyond his own prejudices and beyond the quick diagnosis, Marie could have been treated with more success. You see, it's 35 years later. We've been through over two dozen surgeries, laparoscopic, and virtually every drug treatment that is known and finally a hysterectomy and partial colon removal and she still suffers daily. Cramps so bad she doubles over. Hers is a medium case.

Most of the drug treatments revolve around suppression of the proglandin production, either by simulating pregnancy with hormones or blocking their production by chemically inducing a type of menopause (temporary we are told, the latest gynecologist told my daughter her organs were like a 50-year old's). The doctors just shake their heads now.

The surgeries, laperoscopies, involve two small incisions, one in the belly button, one further down. After inflating the abdomen with carbon dioxide, a viewer is inserted in one incision, and the organs are manipulated through the other via a probe. Spots (they look like rust) of endometrial tissue are burned away by laser, the laser also can remove or open cysts. Usually recovery is quick, sometimes, it isn't.

That is the sad part of this disease, severe cases generally have little pain, mild cases cause discomfort during the period. It is the medium cases that seem to cause the most suffering.

At first, they told us that pregnancy would cure it, they told this to a 15-year-old. Then we did our own research. In some cases it results in remission, for a while, but then it comes back. The best hope for a cure is bilateral overectomy, a hysterectomy in the popular parlance. I wonder if the disease effected men if they would be so quick to want to remove the balls of an 18 year old boy. The sad part is, in some cases, even the hysterectomy doesn't cure endometriosis.

In our circle of friends, 4 out of 5 women have been diagnosed with endometriosis. 40-50% of women who are operated on for other conditions are found to have endometriosis. It is time that the myth that a woman's periods are supposed to be tough and that they should bear their curse in silence be revealed for the hoax it is. I say again, please get a medical check from a qualified endometriosis specialist if your loved ones experience periods hard enough to cause missed school, missed work, missed lives. Get them checked as soon as possible, my daughter was diagnosed with this disease at age 15. I wonder how many of the girls I knew in high school who missed a couple of days a month because of the "curse" are now sterile. Don't let yours suffer in silence, while there is no cure, there are treatments. Specialists can generally be found at fertility clinics.

It may mean putting off careers to have children, marrying earlier than planned, or other major changes. It may already be too late. It can cause tubal pregnancies and other problems such as spontaneous abortion if left untreated or diagnosed.

I've watched Marie battle this disease. I've let her squeeze my hand until her hand and mine were white and bloodless. Watched her miss high school, miss dances, she had to come home early from her only prom. She finished her diploma by correspondence and home schooling, then had to drop out of college because of the pain and cramping. She is now considered 100% disabled because of chronic pain from nerve damage from all the “cures”. This isn't a disease that will go away. I doubt there will ever be a telethon for it. But we can't afford to ignore it.