Endometriosis and Me – Part I

Sarah at Fumblingtowardgrace just posted her PCOS story and inspired me to do the same. Except that I don’t have a PCOS story, so I will stick with endometriosis. In any case, check Fumblingtowardgrace out for great honest posts from a  “traditional girl living in a not-so-traditional world.”

I first learned about endometriosis in my teens. I had suffered with severe cramps for years and one of my older sisters told me about this disease where the type of tissue that normally lines the uterus grows outside the uterus and causes cysts and scar tissue which can cause pain and infertility.

A few years later my pain had worsened so that instead of a few really painful days a month I had over a week of significant pain in addition to very mild pain which had started at other times of the month. I sought medical help with the idea that maybe it was endometriosis. When I described my symptoms to the nurse she diagnosed me with dysmenorrhea and told me that I had two options. I could go on the pill or I could return to running enough that menstruation all but stopped completely.

I was not impressed with the diagnosis since it told me nothing. I was scared to go on the pill for a few reasons. I knew that many people respond negatively to the hormones at first and I was not willing to be even more sick while trying to get through the semester. The nurse said that my body would most likely only take a month to adjust and that if it still made me sick after three months I could switch to a different brand. The second reason for my fear was that I knew that there were different hormonal options, but the nurse either did not think the difference mattered, or did not think that it was worth working through with me. And since I knew just enough to know that I needed to know more, I did not want to risk messing around with hormones without informed medical knowledge. I was even more mistrustful of the nurse’s advice since she had suggested excessive running as a cure. Even if there was not the fact that such a solution would set me up for osteoporosis, it was not an option. I had stopped running because it increased the pain to the point of extreme nausea and I could not make it more than a few miles at a time.

I did not know how to advocate for myself or even how to get passed the nurse to a doctor, so I did nothing.

But after another year passed I was in daily pain. I could not function for at least three days each month. On those days I could not get help, and when they were over I would tell myself that my pain was not really that bad, that I did not have any options other than blindly trying whatever hormone the nurse prescribed, and that I simply needed to live with it.

Except that I could not live with it. At the time I worked cleaning vacation houses, a surprisingly physically demanding job. One day I dragged myself to work but soon knew that I had to talk to my coworkers about whether they could handle the day’s work without me. By the time I found one coworker she asked me what was wrong and questioned how sick I looked before I could say anything. She offered to get me help but I declined and simply thanked her for taking over. I made it out to my car but no further. Driving was not an option, so I simply sat in the car in extreme pain for hours after finding a bush to hide the vomit. I later texted my sister and fiancé with the request that they make me find medical help when I was well enough to do so. They did.

I compiled my research on indications of endometriosis and righteous anger over the fact that women’s pain is never “important” and talked my way through several offers of the pill to a laparoscopy. The surgeon removed some endometriosis and cysts, informed me that my fallopian tubes were clear, and offered me a prescription for the pill. She answered my questions about the difference in hormones in various types of pills, patches, injections, and rings, but her information about the success of certain options for relief of endometriosis pain was limited. I hoped that my pain would simply go away.

A few months later the pain was as bad as ever and I figured that artificial hormones could not make it worse, so I started my first choice for hormones. It was amazing. I was oddly saddened to not experience my normal fertility cycle which I knew so well, but I could not have been happier about the fact that I could function normally.

The next summer I had flexible employment, so I thought that I had no “need” to live without the pain. I stopped the hormones and the pain returned immediately.

It was not long before there were once again several days a month where my choice was to either stay in bed or vomit with the pain of movement. Despite prescription pain medication I spent the night before my wedding suffering the consequences of forcing myself through the rehearsal, and the next morning I did not eat or drink for fear that there would then be something in my stomach to come up on my dress. My sister brought a bowl along for the ride to the church and placed it under the front pew in case I had to make a run for it. Thankfully adrenaline got me through the day and I did not have a chance for normal nervousness since I was focused on making it through Mass without running out and scandalizing  those who had no idea what I was going through.

The pain never got worse than that, but it was more than half a year before it started to get better.

Continue with:
Endometriosis and Me – Part 2
Endometriosis and Me – Part 3

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6 thoughts on “Endometriosis and Me – Part I

  1. Maggie

    Thanks for sharing your story. I have heard of endometriosis but never have known how it affects women. I feel it is important for all women to know about these womanly troubles, even if they don’t suffer from them. I look forward to part II!

  2. Genavee

    Thanks for your courage in sharing such a personal story. It always surprises me how many people I know have some sort of chronic pain or something else that makes life harder. I really hope the more people are willing to share the more things like this can be taken seriously and we an learn how to better support each other. Looking forward to part two.

  3. Rae Post author

    Thank you both for your encouragement! I am a big fan of others sharing stories but used to be far too concerned about grossing people out or the whole TMI thing.

  4. Erin

    As someone who also has suffered from endometriosis, and found incredible relief with birth control pills, it is so hard for me to imagine why you would ever stop taking them. I look forward to reading the rest of this series of posts.

    1. Rae Post author

      If I fully understood it I would tell you. But I don’t really understand why I thought and felt what I did at the time. I suspect that some of it had to do with the fact that I had spent so long in pain that it was the default norm for me and being pain free was a deviation from the norm which I had to justify for myself. Part of it probably also had to do with the feeling that I was simply masking the problem rather than curing it. I fully planned to seek further treatment once I had the resources, but somehow controlling it hormonally did not count as treatment in my mind.

      In any case, I felt as though I had to accept the pain and that rejecting it through treatment might be harming my ability to process life correctly, connect to God, however you want to think of it.

      Of course the problem with that is that I would never have applied that sort of reasoning to someone else, so how could it be true for me? And things have changed so that if I were faced with the same situation today I would not hesitate to choose the hormones. So I cannot really explain my choice at the time since I do not know/remember why.

  5. Pingback: Self-perception and Goals

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