an invisible illness

I always had a dull ache from my rib to my hipbone, with shooting pains radiating down the top of my thigh. I got so weak my legs and arms would shake. Horrible headaches. So dizzy I couldn’t hear what the person next to me was saying. I felt like someone was stabbing me in the stomach and twisting the knife. 

I don’t say this to be dramatic or for pity, I just want you to understand.

Last year at this time, I was newly married in our recently-purchased home, having just returned from our honeymoon. I was working out with my husband each morning, going to work, and so excited for the future. Life felt so sweet. Except… something didn’t feel right. I’d had to leave work because of pain. I was absolutely and utterly exhausted – hit a brick wall exhausted – and it would hit me out of nowhere. Looking back, it’s hard for me to recall a time I didn’t have pain in my side, stomach, or back.

After a month of escalating symptoms, I made a doctor appointment. When I met with the doctor and explained, he asked me a few questions. He looked perplexed… I had no other symptoms. The doctor gave me antiobitics, set me up to have an ultrasound, and said, “Try the antiobiotics and we’ll take a look at the ultrasound results. If that shows nothing, we’ll chalk it up to another one of nature’s mysteries.”

I certainly was not going to take medication for an undiagnosed illness. I went for the ultrasound. The tech saw a few ovarian cysts, and said she couldn’t see one of my ovaries. She told me this happened on occasion. Nothing surprising. Before leaving, she said, “If you don’t hear from us within a week, just give us a call. I don’t want you to get lost in the system.” Thanks.

I decided I would get a second opinion. The next doctor? He was kind, he listened, and he mentioned endometriosis. I’d heard of it before, but admittedly, I didn’t know what it was. He wanted me to try taking hormones (birth control) to see if it helped at all. I will leave my birth control theories for a later post…

I tried it, but I was having side effects and was advised to quit. I went back for a follow-up appointment. The doctor asked if I wanted to try another. Honestly, I was tired of pain, tired of emotional ups and downs from hormones, and tired of not knowing anymore than I had 6 months ago. Sensing my frustration, he again explained that endometriosis could be the culprit and he said that the only way to diagnose it was through a laparoscopy – an “in and out” surgery. I wanted answers. I scheduled the surgery.

I cried on my way home from that appointment. Not because I was nervous, but because I felt like I was crazy. It seemed like everyone around me thought I was fine, but I felt so physically miserable. I remember saying to my mom, “What if I go through with all of this, and they don’t find anything?” She replied, “Then that would be a blessing.” I realize how crazy it sounds now that I felt like people thought I was crazy, but when they can’t see that you’re sick, it’s hard for them to believe you’re suffering.

I didn’t think much about the surgery and what it could mean until the week before. I just kept telling myself that I’d worry when I had to. Until then, I didn’t jump to conclusions; it was a diagnostic surgery, after all. I was having it on a Friday and didn’t even request off any time from work. In and out, right?

Wrong. I woke up from the lap to learn that the doctor had removed endometriosis covering my right side and a uterine fibroid tumor. I sat with the nurse after, as she told me all of the things I couldn’t do while I was recovering. She told me I couldn’t drive for a week. I looked at my husband and said, “Oh you’ll have to take me to work.” She laughed in my face. “You aren’t going to work. You need to rest. 7 days.” I tried as hard as I could to fight my husband on this, but he made me follow the doctor’s orders. I ended up being really glad that I did. With 3 incisions in my stomach, I couldn’t do much. And I was so tired that I didn’t want to.

I researched Googled as much as I could about endometriosis. The more I read, the more scared I became. I was presented with women of all ages suffering from the illness. Pain, infertility, major organ complications! I read how foods (basically everything yummy) caused symptoms to worsen. I read about woman having surgeries continuously throughout their lives. I wanted scientific information that I could count on. I eventually went to Barnes & Noble to look for books about it. There were none in stock. There were books about Menopause, Cancer, PCOS… none about endo. I searched women’s health forums online again for any stories of women that I could relate to. It’s hard when you talk about it with people who love you but don’t have it. They will tell you they have bad cramps, that they understand. I know they mean well. The truth is that physically, endometriosis is brutal. But even now, while I’m not in pain, knowing I have it and what that could mean is emotionally exhausting.

When I returned to the doctor, I was already feeling so much better than before. I don’t think I ever really knew how bad it was until I was finally feeling how a “normal” person does. The doctor told me that I had 2 options to prevent the endometriosis from spreading rapidly:

1) Hormones (birth control)
2) Hormones (menopause)

Obviously, I chose the lesser of the two evils, because what 24-year-old wants to enter menopause? Due to side effects, I recently stopped taking hormones. With that decision comes questions: What now? Without hormones, how will I combat endo? What if it comes back? What if I need another surgery? These days, I feel like I’m gambling with my health. I’m trying to focus on what I can control – diet. While I only seem to be able to find theories, I figure that if nothing else, at least overall  I will become a bit healthier.

As I’m searching more online, I’m coming across many women speaking out about endo, but the common theme that it’s just simply not talked about due to the fact that it is often overlooked or downplayed as a bad period or PMDD. I’ve read that endometriosis can be comparable to cancer with how quickly it spreads! Yet no one talks about it and many don’t even know it exists. It may be an invisible illness, but it will not make me invisible. I pray this can change; that I can play a part in raising awareness, that we, as woman who suffer from it, can inform others about it and openly support one another.

I hope that sharing my story may help someone who is frantically looking for more answers or just searching for anyone else in the world who might be able to relate to what they’re going through.

3 thoughts on “an invisible illness

  1. It’s pretty crazy finding it out isn’t it? I am not sure if you plan on having kids, but that is how I found out about mine. It’s crazy sad how it impacts your fertility. And people NEVER talk about endometriosis. I never heard of it until they thought I had it. I haven’t had a lot of pain, not enough to make me go on meds, but if you decide to have children, I hope you don’t go through a tough journey!

    1. Thanks for reading and commenting! I’m really sorry to hear you’ve had a tough time 😦 We do hope to have children in the future – I’ve read how hard it can be for some to conceive. I try not to think too much about it, but am definitely realistic about how hard it may be! I wish you luck and will be following your journey!

  2. Our stories sound SO similar. While I hate that you’re going through such similar stuff, I’m glad I found someone I can relate to. 😉 hugs! Xo

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