This article is written first-hand by Carmen, a Northwest Family Physicians patient who volunteered to share her story with us. Thank you Carmen!
I guess I never really thought of having endometriosis as a health journey because it was just something that came up and happened; so, I dealt with it. That’s how you handle health issues; you look at what is in front of you, and you make the next best decision. I know a lot more about it now than I did when I was diagnosed and maybe that’s a good thing.
History and Symptoms
I had extremely heavy and unpredictable periods starting when I was 11 years old. It was around 30 years ago, in college, when I noticed I was having twinges of pain in my sides. They started as small twinges just inside my hips and grew to be very painful in a short amount of time. The pain was so intense I would sometimes throw up. There were times when I was at work that I would be doubled up on the floor puking again and again waiting for the pain to pass. Finally, I was compelled to find out what was going on.
I saw doctor after doctor, and as a young person who was not sexually active, it was extremely invasive for me. Lots of pelvic exams. I had several visits where I had multiple exams by more than one doctor. There was nothing inappropriate, but each exam was painful and scary for me.
Diagnosis
I finally saw a gynecologist who set me at ease, did an exam, and determined the cause of my knee-buckling pain, nausea, and vomiting. It was likely endometriosis. He explained several treatment options with one option being no treatment at all and just waiting. He warned that no treatment could mean continuing to have painful episodes. I could become pregnant and that may solve the problem, or I would need surgery to remove the abnormal lesions.
Treatment
I was young and in college and had big plans for my life. Getting married and having a baby right then was not an option for me. So, as the pain and episodes continued, I decided to have surgery.
The surgery went relatively well (other than the extreme fatigue from the anesthesia), and after the surgery I was officially told I had endometriosis. They were able to scrape off several lesions from my uterus and remove large cysts from my ovaries (called endometriomas or chocolate cysts). We finally had answers to explain what I was feeling! I learned that the doubling pain, nausea, and vomiting happened when the cysts burst in my abdomen. Ugh…a gross thought, really.
Prevention
For prevention, I was put on a continuous dose of low hormonal birth control pills. Several times through the years I tried to go off the pills but with almost immediate repercussions. I was hospitalized once because the cysts came back. At one point it was so painful that they were going to give me a morphine drip, but I chose not to do that and went home. I told them I can handle the pain if I know what it is. I went immediately back on the pill.
Another time I tried to go off the pill and had a pain and a lump. They did an ultrasound and found it was a giant cyst. I didn’t want to feel that one burst, so I went back on the pill immediately and somehow (maybe) it reabsorbed. I’ve been on the pill ever since—almost 30 years now.
I know that’s a long time to be on the pill, and it’s generally not recommended for some. Fortunately, I don’t have high blood pressure or any health issue preventing me from being on the pill for so long, so it hasn’t been necessary for me to find other ways to deal with my endometriosis pain (like other medications, an IUD or additional surgeries). I still do have pain from time to time, but it’s not severe. The treatment works for me. And honestly, there are some positives. I haven’t had the mess of a monthly cycle for all these years and, since I never found the person God intended me to marry, I never faced the reality that I may not be able to have children. And the way I understand it, it’s not necessarily true for everyone who has endometriosis. Many women with endometriosis struggle to get pregnant when they want to have a baby.
Going on With Life
Still, women are resilient. When one door closes, we can find other paths to happiness and opportunities to give love to others in our lives and still feel fulfilled. Instead of having children of my own, I have a career where I am with children all day. I’ve also found other paths to fulfill my desire to have my own children including being a foster mom. And I won’t say it never crossed my mind to adopt a child. There are so many children out there who need forever homes, and sometimes I think it’s God’s plan for those of us who may not be able to have children, to be there for a child who has lost their parents.
In addition to those things, I have my family. My siblings had children, and I have been able to give myself and my love to my nephews. I cherish those relationships, and my teen and adult nephews all contact me regularly.
Yes, I guess having endometriosis has been a journey. But it hasn’t been a bad one or one that I even think about being on. I just take life one day at a time and find ways to be happy and bring joy to others in that day. I don’t dwell on the hand that I’ve been dealt, I just move forward and make the best of it. There are so many ways we can make a difference, and we just need to pray and find that way to fulfillment for ourselves.
Learn more about endometriosis by reading our article What is Endometriosis? and always talk to your doctor if you are experiencing any symptoms.