LIVING WITH ENDOMETRIOSIS IN CANADA AND IN THE UNITED STATES

From my own experience in Canada, I can attest to the fact that it was initially difficult to get a diagnosis and even after I was diagnosed treatment was not obvious. I now realize that my experience is not that different from my counterparts in the United States barring the Medicare component.

The initial difficulty I encountered was to determine for myself how much menstrual pain was normal. From the first time I started menstruating I experienced substantial pelvic pain combined with headaches, nausea and intestinal problems. The pain was so severe that I became faint and totally incapacitated and had to be sent home from school in a taxi. Painkillers did little to alleviate the problem.

Later when I started using birth control pills, I found the pain during my periods diminished but I developed other symptoms such as weight gain, nausea and pain in my gall bladder. It was however preferable to the debilitating pain without the birth control pills.

However after several years of taking birth control pills, I found the pain in my gall bladder was getting quite severe and I feared that all those chemical hormones might not be very good for me, so after about 5 years of use, I stopped taking them.

Initially, I felt fine but within approximately 6 months, I started experiencing pelvic pain during and after my periods, developed asthma and several food allergies. I became weaker and weaker not really knowing what was wrong with me. I went to several doctors including gynaecologists who examined me and found nothing that could readily be diagnosed. This went on for a year and a half. My periods were getting worse but I was used to having debilitating pain so I did not think that it was necessarily unusual. Eventually out of sheer desperation but not really expecting any kind of help, I went to a local clinic and found a doctor who sorted thought maze of symptoms and carried out a pelvic exam and found a large pelvic mass of approximately 6-7 cm. He told me on the spot that he did not know what it was but that it was of a size that needed surgical removal. I was in a state of shock; how did it get that way? I had seen doctors on a regular basis for the last year. A second doctor confirmed that I needed surgery but did not know the nature of the cyst either. While I awaited surgery I had another period where I started hemorrhaging and drifted in and out of consciousness on the floor of a washroom at work.

Finally the surgery took place and the doctor told me I had endometriosis. I had no idea what that was and asked him where it came from. He said he did not know. I then asked what is the cure? He said there was none but that putting me back on birth control pills on a continuous basis would probably help since it would stop my cycles. That was in 1980. 18 years later I am not sure we are that much further ahead in determining either the cause or the cure. I am however grateful for one thing. Canada's health care system: I am not sure how I could have afforded the $6,000 hospital bill at the age of 25. I hear of others who have no insurance and no money to pay for treatment of this disease that often requires expensive surgery and expensive drugs. What are they supposed to do?

I wish I could tell you that my story ended back with the surgery in 1980 and that everything was great after that but unfortunately as my story and that of other women with the disease will attest, such is not the case.

I was reasonably well for approximately 3 years, although I experienced substantial weight gain. Then I experienced some numbness in my right arm, leg and face which I tried in vain to ignore for over a week since I was in the middle of midterms of my masters degree. Finally I went to see my general practitioner who immediately got me admitted to the hospital neurological department. They ran bloodtests, CAT scans, angiograms, and lumbar punctures for over a week and put me on heparin. They finally concluded that I was having transient ischemic attacks and that I should definitely not be taking birth control pills. Great I thought now what happens to the endometriosis. Wait and see maybe you will be all right they told me. I was reasonably all right for about a year and a half until the pelvic pain returned with my periods. It got progressively worse but unfortunately pelvic exams revealed nothing abnormal. So, I took stronger and stronger painkillers in an attempt to lead a half-normal life. Until finally I ended up on the floor again unable to get up as a result of the pain. This time a visit to the gynecologist unearthed a 7 cm. cyst. How did that one get there so fast; the doctor had been tracking me for months. I was as perplexed he was. 292's and Anaprox were not doing anything so in spite of some reservations, he prescribed the drug Danazol. It stopped the pain as well as my periods which was good but I started swelling up like a balloon and getting pains in my legs and headaches. We finally decided after 5 months of treatment to stop the Danazol and to opt for surgery. This time the surgery was to remove the endometriosis, the uterus as well as the ovaries. At that point in time, hormone replacement therapy was out of the question because of the previous history of transient ischemic attacks and endometriosis.

For some bizarre reason even at the age of 30 that did not seem to frighten me half as much as the thought of more debilitating pain. I was willing to have all my parts removed in the hope of ending the pain. The thought of that today still angers me. Why did it have to happen? How many men would allow themselves to be treated that way and not cry blue murder?

My disappointment and anger had to be put aside for a long time because as I soon found out removal of the uterus and ovaries is not a cure for endometriosis. Trying to live without hormones at the age of 30 proved to be a nightmare. I was weak, asthmatic, and I caught every virus that came by. I had trouble sleeping and concentrating. More tests determined that hormone replacement therapy was less dangerous than the slow death I was experiencing. Premarin helped but Provera made me ill. Finally I stopped the Provera and eventually the Premarin as well to replace it with injections of Climacterone. Those made me feel better, gave me more energy and reduced the number of infections I was getting. I combined them with antihistamines, entrophens and muscle relaxants as well as a change in diet, lifestyle as well as several alternative medicine treatments.

However this did not stop a new growth from appearing, except at this point in time there was not a surgeon in the city who wanted to touch me with a ten foot pole claiming that the risk was too great and that unless I was on the verge of death's door they were not recommending that I get more surgery. To be quite candid at that point, I did not want anyone to come anywhere near me, so we were all in agreement. There had to be another way.

I started with ostheopathy, then acupuncture and then some energy work. I changed my diet further; I cut out most red meat, wheat, processed foods, dairy products and tried to buy mostly biological products. I changed jobs where I had previously been exposed to an industrial manufacturing environment in favor of healthier alternatives. Eventually, the cyst diminished in size without having to modify the quantity of Climacterone. The asthma was also substantially less debilitating and the pains in the back and legs diminished. I am happy to say that even though things are not perfect today I was able to travel to Egypt last fall without suffering any ill effects and that last week I played ice hockey in full equipment for the first time in my life on a team where most of the players were men and I not only survived but had fun.

Lyse M Tremblay
414-355-2200 Endometriosis Association
Milwaukee, USA