My Endometriosis Diagnosis

Paul_Klee_Ein_Weib_für_Götter

I was diagnosed with endometriosis just about exactly three years ago at age 34. It’s part of my #invisiblefight. I’d had a few odd pains during periods over the years, but I thought they were just cramps. I had no clue that I was living with a severe case of endometriosis. During the spring of 2012, I woke up during the night with possibly the most severe pain I’ve ever felt. This was before I met my husband and I was living alone at the time. Fortunately, my mother was visiting when I awoke in pain and I could go in to ask her to take me to the hospital. I felt a stabbing pain in my lower abdomen/pelvis strong enough I thought I was going to pass out.

Off to the emergency room we went in the middle of the night. The service was terrible. I saw a doctor for a minute or two. He poked at my belly a couple times, asked if I’d ever had endometriosis, ordered me a shot of Toradol (which did help), and sent me on my way. I was given some kind of 2-page handout on endometriosis and directed to follow up with a gynecologist.

I found a wonderful, compassionate doctor to see next. I had an exam and ultrasound. I’d had a copper IUD for a few years. It was not in the proper location anymore so it was removed. I’ve always wondered if that IUD played any role in the development or severity of my disease. This doctor identified some tissues surrounding my ovaries from the ultrasound and then referred me to a specialist surgeon. He was so kind and took time to answer all of my questions.  When he made the referral, he told me, “This is who I would send my own daughter to.”

I made my appointment with that doctor – a gynecological surgeon. We had some visits and eventually a laparoscopy was scheduled. I was scared, but I had no choice. I’ve always wanted to have children and I wanted to get my ovaries taken care of. Turns out, the endo would have started to cause me serious kidney and bowel problems. So I went in for the surgery, which will be a post for another day, and I was diagnosed with endometriosis. The surgery went well and the surgeon has been wonderful. Very capable, kind, takes time to explain and answer questions, and has provided me with good, frank advice. I had a severe case and what they call a frozen pelvis. The doctor said my pelvis will never be the same, but I’m not sure I understand what that means. I had large endometriomas on each ovary. What I don’t understand is how my previous providers didn’t notice that my ovaries were super extra-large in my annual exams leading up to this. What if those had been tumors?! Anyway, it is what it is. My doctor also encouraged me to hurry up and get pregnant if that was one of my goals in life. Having children is one of my primary goals in life, but that journey has turned out to be a tough one.

I feel fortunate that I don’t have more endo pain like I know many women have. I do have some symptoms that make me fear its recurrence and I should probably go for a checkup. I also have other chronic pain from other conditions. I’m very thankful for my health insurance, for the pain that alerted me to the illness, for the kind and compassionate, wonderful doctors I found, and for the man who was my boyfriend before the surgery and is my supportive husband today. Endo has changed my life and I expect it will change my life still more in the future.

It’s been so helpful to hear the stories of my sisters in this condition. Thank you for reading and thank you for sharing your experiences!

Image: Ein Weib fur Gotter by Paul Klee (translates as “A Woman for Gods”), public domain

Text Copyright Snowdroplets 2015

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4 responses to “My Endometriosis Diagnosis

  1. I appreciate you sharing your experiences. I wish endometriosis was taken more seriously and I understand what it is like dealing with such severe pain on a daily basis. Even if you can’t see us you have the support of many many women (and any partners), so sending you a big hug x

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    • Thank you so much! I’m so happy to be connecting with people like you, learning from what everyone else has gone through, and sharing support. It’s really been a godsend.

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  2. It’s so important to have a doctor that actually makes you feel better and lets you leave their office feeling relaxed. I have an amazing specialist and I’m so lucky to have found her. I agree with the post above, I really wish it was taken seriously. The GPs i’ve seen are really just not interested in helping and treat you like your making it all up or it’s not that bad.

    I wish you the best, hopefully one day there will be a way to treat this awful condition. x

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  3. Pingback: Bad News – Recurrence | snowdroplets·

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