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The 5 Emotions I Experienced After My Endometriosis Diagnosis

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Endometriosis is a chronic disease that affects one in every 10 women. Every woman has tissue inside their uterus, but women with endometriosis have built up endometrium tissue outside of the uterus that can’t break down every month like other tissue, causing abdominal pain and many other symptoms. Some of the symptoms of endometriosis are severe abdominal pain and back pain before, during and after a menstrual period, pain during or after sex, bowel and bladder trouble and, in many cases, infertility. There is no identified cause for endometriosis and as of yet, no cure, as the tissue is likely to grow back. I have recently been diagnosed with endometriosis and I wanted to share this blog post as a way of making people more aware of this chronic disease and how it affects people.

Anyone who has endometriosis probably knows that it is not easily diagnosed and many women, including myself, can go undiagnosed for years, told by doctors it’s “just a bad period.” And because you get told this so often, you actually start to think you’re imagining the pain, and maybe it is just a “bad period.” So when you are actually told there is something wrong with you and there is a name for it, endometriosis, there are some mixed emotions. These are a few of the many reactions or emotions I felt and I’m sure many others have felt them, too.


Sitting in the hospital bed after a laparoscopy, still feeling the after-effects of the anesthetic and the throbbing pain from the surgery and listening to my surgeon and gynecologist, I was eager to be told the surgery had been worthwhile. I actually felt myself smile when I heard my doctor say, “So it turns out you do have endometriosis.” Before I could even take in the rest of what she was saying to me, I felt this sudden relief – relief that I could finally put a name to what was wrong with me. I knew deep down there was something wrong, even though I had been told by doctors, nurses and gynecologists that I was fine, even though every blood test, urine sample, internal examination, external examination, scan and ultra sound was clear and showed no signs of anything being wrong. At one point I was beginning to think that maybe I was just crazy and the pain wasn’t actually as bad as I thought. A gyno told me about a year ago that my symptoms sounded a lot like endometriosis, but that’s all I was given – a name. No information, no proof, nothing – just a name. I endured many more trips in and out of hospitals and many more tests. One gyno even made a point of telling me I could have a sexually transmitted disease – and this was three years after my first visit to a gynecologist. I eventually demanded to have a laparoscopy. So when I got the answer I had waited years to hear, I was relieved.


The relief didn’t last as long as I thought it would, and for a couple of days after the surgery, still feeling tired and groggy from the anesthetic and sore from the operation, I had time to think. Too much time – I started to feel a little overwhelmed. I finally had an answer when I knew there was something wrong with me, but as great as it was to be able to say, “I told you so!” I started to want to take it all back. I didn’t want to face the truth that I had something wrong with me that wasn’t going away. Then I realized I didn’t actually know much about endometriosis, the disease I had to live with for the rest of my life. All I really knew was what I read online and the tiny bits of information my gyno had so kindly shared with me.


After I talked to my sister and boyfriend, I started to feel a little less overwhelmed and thought I was doing well with my emotions. Then the fear kicked in. Fear of living with this pain for the rest of my life, fear of letting it all get on top of me, fear of it preventing me from working when I was really bad or going to social events with friends, fear of it affecting my intimacy with my boyfriend and ruining our relationship. I’m only 22 and have a long life ahead of me, so I started to fear that endometriosis would take over that life.


I began to face facts after a while and realized my life wasn’t going to be the same. As much as I would have liked to pretend otherwise, I knew things would be hard. Since I was a little girl I’ve had one dream: have a family of my own. I never wanted to have a big-shot career or travel the world or make lots of money. I just wanted a family. To get married and have kids. Having a baby means everything to me. I have met the man of my dreams, my future husband, but now I have found out I might not be able to give him that. The one thing I wanted from life, and there is a small chance that it won’t happen. And the longer I wait to find out, the less chance there is. That thought devastates me beyond words.


I realized it was time to start facing facts and stop thinking the worst. My life wasn’t over just because I was diagnosed with endometriosis. I have it and I have to get on with it. Easier said than done, I know, but I can’t let this thing defeat me. Don’t get me wrong, I’m still scared, but I have people around me who love me and support me and no matter what happens that isn’t going to change. When I was just 13, my big sister was diagnosed with a chronic illness, and every day since then I have watched her live her life like there is nothing wrong. Sure, she has her bad days just like I do, but if she’s taught me anything it’s that when the bad day is over, you brush it off and get back up again. And that’s exactly what I’m going to do, too. I know it won’t be easy, but I have endometriosis; it’s not who I am. So I’m not going to let it define me.


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Image via Thinkstock.

Originally published: December 9, 2016
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