Cancer Lite

Endometriosis has only just been recognised, but it's a killer.

I was never really told why I had recurring abdominal infections when I was in my 20s and early 30s in North America. I was talked into trying out an IUD when I was 19 because birth control pills didn’t agree with me at all, but I was not ready to become a mother. The IUD was a disaster. Not only did the insertion hurt, but within a month or so I passed out at work due to fever and pain, which my doctor told me that was due to the fact that the IUD had punctured a uterine cyst. What a cyst was doing in my uterus was a mystery to me, but I was given antibiotics and told to rest for a bit. I seemed okay after a week and went back to work, but that was the start of a twenty year friendship with what they called at the time “pelvic inflammatory disease”…one of those lovely medical terms that are simply a general name for something that they don’t know much about. When I was particularly stressed or run down, it would flare up and, although my body doesn’t register fevers very well and I have a very high tolerance for pain, I got fairly good at recognising the symptoms.

Basically PID meant that my entire abdomen became extremely inflamed and the last time I was diagnosed with it, the doctor wanted me to go into the hospital in Kitchner/Waterloo for a six week treatment on antibiotics with painkillers and a liquid diet. Unfortunately, I was set to begin running my Masters’ research the next week, which I figured that I could do with the help of my student friends while I set up the schedule for testing from home by phone. We didn’t have mobiles and I knew that the hospital was not going to let me use a phone, plus “liquid diet” meant gallons of jello and miserable chicken broth without so much as a clove of garlic. No way was I signing up for that so I talked the doctor into a prescription and went home to my boyfriend who later became my husband based on his cooking and care for me over the next six weeks. It was crazy, but most of graduate school is crazy. Later I had visits to the hospital to remove adhesions (scar tissue) that was clogging up various parts of my anatomy, and before I was thirty I had only one ovary and a pair of fallopian tubes that looked like 40 miles of bad road after a rain.

When I moved to Toronto and married the good cook we looked into the issue of children with an excellent extreme-pregnancy obstetrician. Aside from the physical issues of tubes that didn’t really open and one working ovary, my hormones were a total mess, and Dr. Ryan told me that there was no way at all that I would be having children without some hormonal assistance after we had tried said assistance and found it quite horrible. I was safe from the danger of pregnancy, I could stop using the diaphram that had been my only safe means of birth control and just relax. But my body had it’s own ideas and a month later I was pregnant with my son. The pregnancy went fine, the baby was perfect and I adapted to being a mother. A few years later, I became pregnant once again and had a daughter. Perfect. I could quit.

From the moment that my daughter was born she was in pain, the classic “colicky baby” who only slept for about 20 minutes at a time for the first 6 months. She cried almost constantly and our family physician and a number of pediatricions tried everything that we could come up with including some fairly high powered drugs…all to no avail. As she got older, the problem got a bit better I thought, but actually she simply got better at dealing with it and hiding it because she knew how much it upset me to see her in pain. When she was about 12 we went through a few months of intermittent pain and many visits to every possible doctor that could be found to understand why. Finally the best we could come up with was a diagnosis of chronic appendicitis, and when it flared up just before a long weekend, she asked for the surgery to remove it. It wasn’t about to rupture but it was abnormally long and adhered to her colon, so it was troublematic, and she did feel a bit better after that. But her stomach/abdomen was her weak spot and it caused problems frequently at unpredictable intervals.

Both my kids went away to university in New York at Columbia which had a good health service. She made use of it much more frequently than my son did, often with diagnoses that seemed a bit odd to both of us. I was in Egypt while this was going on sorting out my late husband’s estate, but we had the internet and would talk online about the research that she’d begun doing on what this mysterious illness could be. As time went on, the bouts became more frequent and debilitating, and her attention to her research continued as she went into graduate school in New York. I don’t recall when it was that she introduced me to the word “endometriosis” but it all sounded a bit familiar to me. I had suffered from my last bout of PID in my early 40s, without ever knowing why it was happening to me, although my gynecologist at the time said that he had seen things ease up with menopause. We continued to follow up together but apart as I was living on my farm in Giza and she had moved to Wisconsin where she settled down with a wonderfully supportive partner. At one point as she wound her way through the medical system in the US, she had a tubal ligation after which her doctor mentioned endometriotic tissues that she should look into once she got over the pain induced by messing about with her fallopian tubes.

Finally in her 30s women gynecologists and internists were beginning to talk about endometriosis, a murky debilitating “female issue” that had generally been just passed off as vague pain. With endoscopy, the doctors were able to go in and look around at what was going on, and it was frightening. Endometriosis is a condition wherein the cells that would ordinarily be inside the uterus grow on the outside of the uterus in the surrounding abdomen where they respond to the hormonal changes of the menstrual cycle by enlarging, bleeding, sloughing off and generally causing havoc. The cells can grow anywhere in the body and they are tiny so they are not easy to remove. With the bleeding and sloughing off of the cells, various organs could find themselves stuck to each other with scar tissue that could cause the organs to misfunction or could cause pain with movement. A few years ago my daughter found an experimental surgery that was being tried by a few doctors in the US. She applied for the surgery and was accepted.

The surgery was only being done on the worst cases and it involved a huge surgical team because no one knew what they would find inside or what organs (heart, lungs, liver, kidneys, pancreas, and so on) they would find affected. Insurance covered part of the surgery, but as it turned out, not all of it. But she was better. Recovery was long and difficult, but life was looking up. She finally had the ability to do simple things like staying up and awake all day without being numbed by pain medications. She wasn’t well enough to handle a normal job has she had wanted to do for so long, but it was better than before. And then rather recently, it flared up again. That is the problem with endometriosis. It’s like cancer in that the tiny cells in the abdomen are growing where they are not supposed to grow, unpredictably, and even if the existing cells can be removed, that doesn’t mean that new ones will not form.

I was speaking to my daughter on the phone this weekend and was horrified to hear about the flare. I can only hope that it isn’t too bad. But at the same time, a close friend of mine here in Egypt had to go into the hospital because she had a situation where some of those cells had formed a cyst which had gone septic. Hopefully the antibiotics that they are using will help the situation, but it may involve more surgery for my friend as well. I know many women who suffer from endometriosis and it’s side effects. For many of them just getting a diagnosis has taken years, by which time, they are in much worse condition. My daughter joked bitterly that endometriosis is “cancer-lite”, while my friend’s doctor told her that it is much worse than cancer. It is time that the medical profession began taking women seriously.