My Endometriosis Journey: Navigating Pain, Diagnosis, and Recovery
By: Katie Kanturek, PT, DPT
As a pelvic floor physical therapist, I often treat patients with endometriosis. But I also have personal experience with living with endometriosis and adenomyosis. Since March is Endometriosis Awareness Month, I wanted to share my endometriosis journey with you.
But What are Endometriosis and Adenomyosis?
Endometriosis is tissue similar to the lining of the uterus found outside of the uterus. It can include symptoms like:
- Severe menstrual cramps and pain
- Abdomen and pelvic pain not during menstruation
- Low back and leg pain
- Gastrointestinal issues
- Painful bowel movement and urination
- Pain with sex
- Fatigue
- Infertility
There can be other symptoms depending on where endometriosis is in the body since it has been found on almost every organ in the body.
Adenomyosis is tissue similar to the lining of the uterus found in the outer muscular wall of the uterus (not where it should be). Symptoms of adenomyosis can include:
- Heavy menstrual bleeding
- Large clots when menstruating
- Severe menstrual cramps and pain
- Bloating
- Pain with sex
- Infertility
- Miscarriage
1 in 10 individuals assigned female at birth have been diagnosed with endometriosis. Unfortunately, there is a lot of misunderstanding, misinformation, and lack of awareness when it comes to these conditions. This is why on average it takes 7-12 years to get a diagnosis. For me, it took 17 years.
The Start of My Journey
My symptoms started when I was 11 after I had my first period. On the first day of my period, my cramps were so severe that I would throw up and have to miss school. On days I would go to school during my period, I often would have to go to the nurse’s office to lie down with a heating pad. One of my pediatricians gave me prescription painkillers. These pills were the only way I could not miss school when I had my period. However, a few years later, my new pediatrician wouldn’t refill the prescription even though I had run out. He told me to just take Midol or Ibuprofen instead. When I told him that these over-the-counter drugs didn’t even touch my pain, he told me that period pain was normal. This was my first experience with medical gaslighting. My doctor made me feel like I was being dramatic or crazy.
In high school and college, my doctors kept saying that my symptoms were normal. They didn’t do any tests or scans. When I was 21, my doctor gave me birth control pills to help my pain. They did lighten the bleeding and made my periods shorter. Before that, my periods would last 7-9 days. I still had cramps during my whole cycle, but they weren’t bad enough to make me vomit. During physical therapy school, my periods got much heavier. I was sick of going through a box of tampons a month so I switched to a menstrual cup. I realized how heavy my periods were because I had to empty the full cup sometimes over 5 times a day. Usually, you only need to do this 2-3 times a day.
When I noticed I was bleeding double the normal amount you should have, I made an appointment with a new gynecologist. Until then my primary care doctor had done my pelvic health exams because I had such bad past experiences with several gynecologists. Determined to have a provider listen to me, I recorded how much I was bleeding for the past 4 months and showed her. This was the first time a gynecologist believed me. She scheduled a pelvic ultrasound for me right away. The scans came back normal besides the fact that my uterus was retroverted. This means that my uterus is tipped backward rather than forward like normal. I didn’t learn until later that a retroverted uterus can sometimes be a “soft sign” of endometriosis. She gave me a new birth control where I only got my menstrual cycle every 3 months so I wouldn’t have my pain as often.
But even though I wasn’t having my period each month, my symptoms still kept getting worse. I began having pain in my lower abdomen and pelvis at random times even when I didn’t have my period. Sex started causing sharp, cramping pain that would last for hours or days. I always felt bloated. My pants would fit in the morning but be super tight by the end of the day. I had way more diarrhea and constipation than I ever had before. I was doing my best to manage the symptoms by avoiding triggers like alcohol, stress, caffeine, intense exercise, too little sleep, and sex. I used heat or ice most nights. I meditated and stretched and skipped social events because I was so exhausted. I switched between using over-the-counter pain relievers, electrical stimulation, and CBD creams to try and take the edge off.
Finally Getting a Clinical Diagnosis
The next year when I saw my gynecologist and updated her on my symptoms, I asked if I might have endometriosis. Without surgery, we couldn’t confirm the diagnosis. But based on my symptoms she did give me a “clinical” diagnosis. Following her suggestion, I began taking my birth control continuously so that I wouldn’t get my period. This eased my debilitating pain during my period but my other symptoms continued and got worse.
By then I had graduated from physical therapy school and was working as a pelvic physical therapist. I started learning more about endometriosis in my pelvic health continuing education. I applied what I learned to ease both my patients’ and my endometriosis pain. Despite this, I would still have to call out of work due to pain flares periodically. After I saw many of my patients get better after surgery, I decided it was finally time to see a gynecologist who specializes in endometriosis.
I found a gynecologist who specializes in minimally invasive surgery and endometriosis excision, which is the gold standard for endometriosis treatment. Not all surgeons have been trained in this difficult excision surgery and only do ablations. Think of excision and ablation surgery like taking care of a weed. Ablation would be like using scissors to cut the weed’s leaves off. Excision would remove the roots and leaves together by digging around the base of the weed. The weed is less likely to grow back if the whole plant, including the roots, is removed. Endometriosis is similar, and that’s why excision is the gold standard for treatment.
Before setting up my surgery, my specialist had me get an ultrasound and MRI. The ultrasound results came back normal just like the one I had years prior. But my MRI found an adenomyoma, which is a tumor form of adenomyosis. My doctor presented me with my options. I could just treat the endometriosis with excision surgery and wait to treat the adenomyosis after seeing if my pain improved. If I was still having pain after that, I could have another surgery to remove my uterus. Hysterectomy is the only cure for adenomyosis. My other option was to have the excision and hysterectomy done at the same time. I talked with my doctor about the pros and cons of each option. I also did a bunch of research on my own. After taking some time to figure out what I wanted, I decided to get the excision and hysterectomy at the same time. This was not a decision I took lightly since it would mean that I would never be able to get pregnant in the future. However, currently, I do not want to have children. If this changes, I know I can still be a parent through adoption or surrogacy since I would still have my ovaries.
A couple of months later on the morning of my surgery, I was a jumble of emotions. I was nervous overall about the surgery. I was scared that they wouldn’t find endometriosis and I wouldn’t have a reason for my pain. But I was also excited about the idea of having some symptom improvement. But the surgery and recovery went better than I expected. My surgeon found several spots of endometriosis including a spot on my colon. This explained all my GI issues. It was so validating to finally have a confirmed reason for almost two decades of pain. I had some pain for the first couple of days after surgery, which I had expected. By the end of the first week I no longer needed prescription pain medication. By two weeks I had stopped taking over-the-counter pain medication. As I got back into my routine after surgery, I was tired for a couple of months. It isn’t always guaranteed after surgery, but I was immensely grateful that my pain and symptoms were completely gone.
Looking To the Future
I’m now a little bit over 6 months out from my surgery. I’ve started exercising again. I can be intimate with my significant other. I can enjoy spending time with friends and family. I can do my job without pain holding me back. This month I am going to the Endometriosis Summit online. I’m going to learn more about the advances in endometriosis research and how best to treat my patients and myself. There isn’t a guarantee that my endometriosis won’t return, but I am optimistic for the future. I don’t take living pain-free for granted. I am very lucky to have my family, friends, and coworkers supporting me. They made my recovery so much easier. I am also thankful to my team of providers: my primary care doctor, gynecologist, surgeon, dietician, and therapist. They listened to my concerns, believed me, and restored my faith in medical providers. I hope that sharing my experience with endometriosis and adenomyosis gives hope to others affected by it. Remember that your pain is real, you deserve compassionate care, and never stop advocating for yourself.
If you would like to learn more about endometriosis and how our physical therapists can help, feel free to read our previous blog here.
Sources:
https://my.clevelandclinic.org/health/diseases/23426-retroverted-uterus