As told to Nicole Pajer
My period was painful from the start. When I was a teenager, my mother made me skip a day of school every month because the pain was so bad. But when you’re young, you don’t really know how your period compares to anyone else’s. You only know what you are experiencing. When people said, “Oh, it’s just your period,” I believed them. The pain came every 28 days and I learned to pace it. I told myself I just had to get through it.
The really bad pain started after I had my appendix removed when I was 17 weeks pregnant with my first son, Eddie. I also had a difficult c-section when he was born. About a year later, I started telling the doctors that something was wrong with my stomach. I couldn’t stretch it. I couldn’t do a cobra pose or lean back without feeling like my stomach was being pulled apart.
The doctors thought it might be a complication from my appendectomy. An MRI showed a surgical clip in my abdomen and tissue connecting my uterus, bladder and abdominal wall. I had to undergo laparoscopic surgery, but afterward the doctor told me that the MRI was wrong. Nothing was right with me.
Except I knew something was happening.
I kept going to the doctor. Many told me I should have my gallbladder removed. That didn’t make sense to me, so I didn’t do it. In the meantime, I was suffering from terrible irritable bowel syndrome-like symptoms, bloating, and excruciating pain. About two years ago it got so bad that I ended up in the hospital. My joints were swollen and I felt like my body was shutting down. I went through test after test and saw specialist after specialist, but I still had no explanation that could explain everything I was experiencing. This went on for 15 years.
The fertility part of my life was also complicated. Getting pregnant with Eddie had been easy. We decided we wanted a baby, tried once and I was pregnant. Trying to have our second child was completely different. It took four years and during that time I suffered a miscarriage. The emotional pain of losing a pregnancy while struggling with unexplained infertility was incredibly difficult. I had a natural miscarriage before I could schedule a procedure, and going through it alone at home was scary and intense. Three months later I became pregnant with my son Max.
Years later I suffered a second miscarriage. This sent me into a deep depression because we no longer had children, but it gave me a new desire to have another child. Strangely, the physical pain of the miscarriage wasn’t particularly bad compared to the pain I was already used to living with. However, the mental toll was enormous and completely draining.
About a year later, when I was 43, my husband and I decided to try in vitro fertilization (IVF) to see if having another child might still be possible. This decision ultimately led me to an answer I had been searching for for years.
During the IVF process, my doctor discovered a cyst on one of my ovaries and told me I needed to get it checked out regardless of what happened during the IVF. IVF didn’t work, so I went to a gynecologist to check the cyst. An ultrasound scan appeared to show what is sometimes called a “chocolate cyst” or endometrioma, a type of ovarian cyst associated with endometriosis. My doctor said I didn’t understand the ultrasound report properly, so I got a second opinion.
But I still couldn’t get a clear answer. I kept saying, “I’m in a lot of pain. Pain with intercourse, pain with everything.” I was told it was okay and that I could switch to contraception.
Finally I got another opinion. At this point I was convinced: I am in so much pain. This can’t be normal.
This doctor listened.
She performed laparoscopic surgery to see what was actually going on in my body. She removed three cysts, including a large endometrioma, and even found the surgical clip that had been discovered on an MRI years earlier. She also diagnosed severe endometriosis and adenomyosis.
The endometriosis was extensive. My organs weren’t where they should be. One of my ovaries had fused to a fallopian tube that had bent backwards and fused to my colon. Both ovaries were behind my uterus. There were lesions on my intestines and bladder.
After 15 years of doctors telling me everything was fine, I finally had proof that something was right. I was so grateful that my doctor took photos during the surgery. I told my husband that without these pictures, I don’t know if I would have believed the diagnosis myself.
This could mean years of layoffs for you.
When you live with pain for so long, it changes you. Compartmentalization became my superpower. After my second son’s cesarean section, I left the hospital 24 hours later thinking, “I can do anything.” For years I thought that being able to push through anything was a strength. Now I’m not sure if it’s always been this way.
I’m still processing what my diagnosis means for my future. I am preparing for further surgery, which will likely include a hysterectomy and more extensive removal of the endometriosis. A year ago I was sitting in an IVF practice wondering whether I could have another child. Now I am preparing to have my reproductive organs removed.
Every time a doctor asks, “Are you sure you’re done having kids?” I have to say yes – not necessarily because I want to be done, but because I now understand how complicated another pregnancy could be for me.
I’m nervous about the surgery, but what scares me the most isn’t the procedure itself. This will be my sixth abdominal surgery. What scares me is going through all of this and still living with the pain. At the same time, for the first time in years, I can imagine a different version of my life—one in which debilitating pain isn’t something I automatically compartmentalize and impose.
Since sharing my story online, I have heard from hundreds of women who have told me that they finally feel heard or that my experience reminded them that they are allowed to seek another opinion. That’s why I keep talking about it.
If you feel like there is something seriously wrong with your body, keep looking for answers. Find another doctor. Ask more questions. Talk to other women. Keep going until you find someone who takes you seriously. After everything I’ve been through, this is the biggest lesson I’ve learned: share your story, advocate for yourself, and don’t take no for an answer when you intuitively feel like something isn’t right.
Do you have any real women, real stories of your own that you would like to share? Let us know.
Our “Real Women, Real Stories” are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
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