The clock is shining bright red 2:21 a.m. and there’s only four hours before you leave to work and your stomach is roiling, trapped gas pains shoot through your shoulders and you know you’re going to throw up. You grab your robe but you’re shaking so hard you can hardly put it on and stumble toward the bathroom. The spasms hit your belly. You sink to the floor because suddenly you’re hot, the room is spinning and you lean over the toilet. The cool of the tile helps take the urge down a notch. This event is worse if it happens during the day in a public place like work or school.
After the nausea passes, you pull yourself up congratulating yourself on keeping your food inside, head to the kitchen to heat tea, and grab several blankets because you can’t stop shaking. The heat helps, you know from experience. Tea helps, mint especially but sometimes with the acid of caffeine is needed. The loneliest hours of the morning are shared with a teacup gripped in your hands while all the normal people sleep on undisturbed, night after night. This event is worse during the week you have your period because you never do get up and go to work or school.
Your boss wonders about your performance and the guaranteed one-day a month absence, but what can you tell them? Your doctors have had few answers. Your only relief is what you’ve learned on your own. But you doubt yourself when your friends and some doctors treat you like a depression case or hypochondriac.
What I learned growing up about having endometriosis (not diagnosed until I was 29 years old) and colitis was the following:
a) diet hinders and helps
b) everyone needs to understand the body and read about illness symptoms to correctly manage their own health care
c) if you think there is a problem, there most likely is a problem
d) women should always have a gynecologist
e) birth control pills are a better solution than narcotics, but no cure
f) endometriosis can affect the colon and cause additional troubles
Most of what I learned helped reduce the number of days I was sick per month, but it took years of piecing the story together bit by bit. Eventually, after several laparascopic procedures-one to remove endometrial deposits with a laser and another to remove a painful ovary, a hysterectomy, one session with a “menopause inducing” hormone, several polyp removals, a diagnosis of h-pylori, and numerous doses of antibiotics all labeled “If you are using this prescription, consider lifestyle changes” that I’ve reached stability. For the moment, I always assume.
Diet
The first thing I learned about diet was that there were a number of foods that my system simply could not tolerate. These foods included fatty foods that caused heartburn like beans or tuna, spicy foods that caused diarrhea such as onions, tomatoes, and chilies, dairy products that caused constipation including butter, milk, cheese and ice cream. I learned relief when I found one of the cures for poison involved crackers and tea because it also settled my stomach. The foods with the highest amount of salt in them were surprising, namely barbecue sauce, teriyaki sauce and soy sauce. Many frozen vegetables and potatoes have salt in them-read the label before buying them.
Later, I found that when the doctor passed out the high fiber diet it meant I should be eating more cereals and not necessarily corn chips. Lately I’ve learned that I can get reduced salt and fat intake and still get the junk food experience by using oatmeal, corn, rice and wheat cereal mixed with a small amount of chips.
Diarrhea can cause swing behavior due to dehydration from potassium loss. When you drink products like Gatorade, you’re replenishing potassium first and salt second in small quantities. Natural foods such as oranges, tomato juice and bananas can replenish your potassium levels better than the sports drink products. This is an important lesson since I’ve had polyps removed twice and the connection between deep fried foods, salt, and colon cancer has been established. Vegetables are better to eat than fruits as you grow older because of the reduced amount of sugar.
I’ve also learned calcium supplements and papaya at night with a glass of water often works wonders.
Menstruation Difficulties
The cramps I had during my period weren’t as painful as some of my friend’s, but they typically involved a temperature that would spike rapidly to 104F, would put me into a state of hyperventilation in about an hour, would involve lengthy bouts of diarrhea, and kept me in bed most of one day, or two. My doctor prescribed codeine, Tylenol and phenybarbitol, but all these really accomplished was to send me to bed for the rest of the day and sleep off the worst symptoms.
When my mother finally talked me into asking the doctor about birth control pills to control my periods, I found the doctor embarrassed me by recommending masturbation to “stretch” the cervical opening without any explanation and by requiring repeated pap examinations, two one-month apart, then a third after three months, a fourth after 6 months and another after a year. Part of the problem was getting a pap smear free of blood but the doctor never explained anything about what she knew and I didn’t know enough to ask. As soon as I went to college though, I lost my medical insurance and ended up relying on family planning clinics to get exams and birth control pills. The result of that was my birth control pills were changed and they were less able to control my symptoms.
What I’ve learned since was that women with retroverted uterus’, a uterus that tips toward the spine instead of forward toward the belly, often have painful periods, sometimes it can prolapse and put pressure on the cervix. The tilt may cause endometrial material to flow backwards into the abdominal area through the fallopian tubes. Once those materials leave the uterine area, they slough off internally and cause many of the symptoms. The birth control pills reduced many of the symptoms such as the high temperatures and reduced the bleeding.
Most of the description of what the doctor was looking for and why is available on the internet. If you understand a little bit about what the doctors know it is much easier to form questions about the actions they take. I love the Merck Manual of Medical Information because of its organized approach and usefulness in providing information. Embarrassment can be reduced if natural processes are explained to patients. Pain pills fpr menstrual cramps can be addictive. If you have a physical problem like mine, you’ll find that pain pills will have little beneficial effect. It’s better to understand and use treatment that can aid than to take treatment blindly.
Colon Problems
A strong taste of salt that would not go away, was my first knowledge that I had additional colon problems to random nausea attacks and monthly menstrual difficulties. Even though I quit eating salt, quit buying products with salt in them, and took additional fiber under a doctor’s care, the salt taste didn’t diminish. I misunderstood the doctor’s orders and ended up taking the laxative form of a fiber product instead of the one without-increasing my problems with dehydration. Intestinal exams where my system was entirely flushed were scheduled every two weeks during the middle of summer. I became increasingly ill. After the first colonoscopy that found and removed a pre-cancerous form of polyp that leaks salt into the colon, pain reached it’s unendurable height. Every day was dominated by the knowledge that my side hurt and it would not go away, not even while I slept. The internist dropped his care of me at this point and suggested a gynecologist.
Luckily for me I had already made an appointment and only had four more weeks until the exam. I broke after three days and called the gynecologist on an emergency basis and lucky for me she provided a new birth control prescription and pain pills. The rest of the surgeries are history, but I still visit my gynecologist regularly.
Concluding Thoughts
Part of the problem with women that have chronic pelvic problems like myself is the interrelationships between the systems involved can cause hard to diagnose problems. Endometrial materials outside the vaginal area can cause symptoms that act like your immune system is involved.
I’m not sure if I would have handled any of my difficulties in the same manner today. “Just having your period” isn’t the answer to all women’s complaints and women should not accept that as a diagnosis. Doctors are beginning to isolate the different problems women have internally, which I see as a good thing. All the self-doubt and anguish I endured could be cured by a team approach that accepted the patient as a reliable partner in the search for a cure on a proactive rather than reactive basis. The good news I’ve seen is that new techniques that put a retroverted uterus into normal position might be a real solution.
