Endometriosis and Me – Part 3

Lessons Learned from Endometriosis

I am usually pretty negative when I think about endometriosis, but I realize that it has given me some valuable lessons.

Money matters for health. I took a class on health economics in college, so I should have learned the basics of the correlation between financial resources and health. But I learned far more from living with endometriosis. At first pain impacted my ability to work, not to mention study. Then I dealt with the fact that I could not receive medical assistance while working full time since I was only insured while in school. Later people suggested I fly to a specialist for a follow up surgery after my first one did not work and some could not understand that cost really was an issue.

These days I am reminded of how much money it took for the “cheap” solutions that did work for me. A few months ago I stopped buying extras and things such as fresh vegetables and vitamin powder did not survive the cut.  As the pain gradually worsens I wonder what it is like for women with endometriosis who never have the option of adequate nutrition, let alone medical assistance. Is endometriosis stereotypically the “rich white career woman’s disease” because they/we are the only ones who can actually get help for it?

Pain is a spiritual hazard as much as it is a blessing. Pain can reshape one’s world. Pain can foster mystical experiences. Pain can transform one into more perfect union with God. The greatest heroes of religion tend to have lived through tremendous pain.

Pain can also cut one off from God. Pain can make it extremely difficult to focus on anything beyond oneself. Pain can stop one from caring about anything other than stopping the pain. And, in my case, pain could stop me from going to Mass. Suddenly walking to daily Mass was far too difficult. There were more times than I could count that I ended up vomiting after forcing myself through the physical motions of Mass (which, for some reason does not involve a whole lot of lying down. Maybe I should have sought out Eastern liturgies?). And at such times I was most certainly not focusing on God, I was focusing on getting through the Mass.

It actually is bad to treat women as if the only thing that matters about their gynecological health is their reproductive ability. I knew that it was wrong to reduce women’s health issues to things like birth control and childbirth. But it was not until I dealt with medical professionals who focused on my fertility when I questioned pain that I knew what it is like to live with the fact that no culture will ever progress past seeing women as child-bearers before they are seen as persons. Everyone cares about endometriosis in terms of its impact on fertility. Yet when it comes to pain, Catholics are quick to say that women can simply live with it and “offer it up”, and medical professionals tend see pain medication as the solution rather than caring about curing a reproductive disease for any other purpose than directly achieving pregnancy.

Charting fertility is not always helpful. Those who practice natural family planning or fertility awareness typically know that charting is not merely a means of enabling one to choose timing of conception. It is also a great way of picking up on a woman’s reproductive problems. Charting can show an amazing amount of issues related to abnormal hormone levels including LPD, low progesterone, anovulation etc. which can then be treated and everything is all happy and good thanks to the wonders of charting fertility. Yay! Except that sometimes when charting shows problems  there is nothing a woman can do and seeing the charts is more frustrating than helpful.

The first month I charted I had a textbook cycle and a perfect chart. I was amused because I had read so much about how real women do not actually have 28 day cycles or ovulate on day 14. Not many months later I was writing on the side of the chart because it did not have enough spaces for the days in that cycle. If I had not been charting I could have imagined that it was simply an issue of stress and that I misremembered the signs of ovulation. But there it was on the chart. And since I had not had any recent visits from an angel I was quite confident that I was not pregnant. I scheduled my first gynecological appointment where I learned that “sometimes our bodies just do these things.”

After a while I got tired of stressing over charts that would be read by any instructor as frequent pregnancies ending in miscarriage and simply stopped charting. It did me no good to have a clear record of the fact that my body was messed up when there was nothing that I could do about it. If I had not had this experience I would have been entirely positive about women charting their fertility in order to always know as much as possible about their health. But now I know that there really are times when “knowing” is not a clear benefit.

I am not entitled to bear children. We all know that if you sleep around a lot you may get STIs which impair fertility, and that if you wait until you are over 35 to try to conceive you can expect difficulty. But it is natural to imagine that so long as one only has a few sexual partners and tries to conceive in one’s 20s, one is going to get pregnant immediately. When things do not work out so easily there is not merely sadness about the sub-fertility, it is as if her entire world is turned upside down because she never previously considered that she is not entitled to bear children.

Having endometriosis taught me that simply having a woman’s body did not mean that I would be given the opportunity to experience pregnancy and childbirth. Knowing that I had a disease taught me that I could not simply expect everything to be well with my body. While I sincerely wish that no one suffered from infertility, I do wish that more women could experience something sooner in life which would teach them that no one is entitled to experience pregnancy or childbirth. Infertility is hard enough as it is, there is no need for its pain to be magnified by the fact that one never previously imagined anything other than complete control over family planning.

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I asked my husband what he had learned from my endometriosis, and he said that it made him learn how to take care of me much faster than he would have otherwise. I suppose that life just is not fair: I get all the deep philosophical lessons and my husband just gets to learn to bring me a heating pad and apply pressure to my lower back.