Kristin’s Endo Journey

My Endo Journey:

I was diagnosed with endometriosis back in 2017. Back in fall 2016, both my back and neck went into spasm the same time that I was having my menstrual cycle. I had decided it was time to see a gynecologist and I was persuaded to get a birth control device since I would get migraines anytime I went on birth control pills. My doctor at the time highly recommend the Depo shot. However, 6 weeks later I started bleeding continuously. I continued to go to different doctors for several months and they couldn’t figure out the bleeding and just kept telling me that I was fine. They then gave me an IUD to stop the bleeding. A week after insertion of the IUD, I suffered severe pelvic pain. Over the next 6 months, I literally felt as if my vagina was going to fall out of my body. I kept going to gynecologists who took my insurance and no one could explain the pain and the bleeding. I had multiple ultrasounds and ER visits in which they told that I just had cysts on my ovaries and that there was no treatment for this except birth control. I finally got a recommendation for a doctor who did an ultrasound in her office. She took a very detailed history and sent me for an abdominal CT scan that revealed endometriosis that was specifically around my colon. I tried various hormones to stop the bleeding and the pain continued to increase. After a few months after the diagnosis, I threw my hands up in the air and agreed with my doctor to have the surgery.

I think a big misconception with surgery is that we think it will solve all of our problems. When I went in for my surgery follow-up, my surgeon/gynecologist recommended that I try a plant based diet. This was not easy and still isn’t but when I avoid meat, dairy, sugar and gluten; I feel much better.

My recovery felt like I was run over by a truck for a good 6 months. My doctor suggested that I see a pelvic floor physiatrist and pelvic floor PT. I chose to see a pelvic floor PT that I had met in a course the year before. It was interesting and very helpful to go through this experience myself and see what it was like to be on the other side of what I do. The pelvic floor physiatrist recommended gabapentin to calm down my nervous system and did a very detailed history and examination. Acupuncture is also very helpful to help balance your hormones and address your pain.  After working with my team and with the introduction of pelvic floor injections, I can live a life where pain does not take over me and controls my life. Sometimes it can rear it’s ugly head but I can usually identify why it happens. I am lucky in this sense. Lucky that I can keep a handle on it for the most part. I’m lucky that I got a diagnosis somewhat quickly as compared to my fellow sufferers who wait 7-10 years for a diagnosis. I’m lucky that I’ve come to terms with it. There is no cure. But these are the cards I have been dealt for now. This disease has taught me so much about myself and has taught me to persevere.

In retrospect, here a few things I learned in the process of suffering with endometriosis:

1.) It takes a village. Find your team: gynecologist + pelvic floor physiatrist + pelvic floor  physical therapist + acupuncturist

2). It’s important to avoid high intensity exercise. Avoid jumping and running if you can.

3). Try as much as possible to entertain a plant based diet.

4). Listen to your body.

5). It’s worth paying the money for specialists to help you. You can get money back but you can’t get the time back.