I Was Diagnosed With What?

Endometriosis.

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In May of 2019, I was diagnosed with endometriosis.

But how did I even get here and what exactly is it?

Well, first, endometriosis is a disorder where the tissue that lines the inside of the uterus (the endometrium) grows outside of the uterus. This tissue can be found on the ovaries, the fallopian tubes, or intestines. In some cases, this tissue can be found outside of the pelvic cavity, a common area is in the chest cavity on the diaphragm and lungs. The common symptoms are pain and irregular menstrual cycles. Some can also experience fatigue, leg pain, bloating, nausea and more. The pain is not just during your period either: you can have pain anytime during your cycle, pain with intercourse, and pain with using the bathroom. When I say fatigue, I mean disruptive fatigue, not just being tired and you need a nap. Leg pain so bad you can't sleep. Pain so disruptive people have needed to take time off during flare ups. And these are just a few common symptoms.

So how did I get here? I was diagnosed pretty quickly compared to the average case. I began having symptoms in late 2017, except, endometriosis is not what I was thinking about. I just thought I had a simple ovarian cyst. Up until this point, I had only gained weight (20 pounds in less than 2 months). But the pain was bad enough it warranted a visit to an OBGYN, which at this point I told myself "it's probably time I found one, anyway". Ladies, it is definitely important that you have an OBGYN, or at least have your family doctor do your annual check ups. But an OBGYN is specialized in women health.

Anyway, I made my appointment and explained what I had been experiencing. I actually was originally concerned for Polycystic Ovarian Syndrome (PCOS) because of the weight gain and a host of other symptoms I had. I had an ultrasound that did show I had polycystic ovaries, the string of pearls physicians call it, tiny cysts that are lined up around the edge of the ovary. So, yeah, my PA told me this seemed to be PCOS. Ok...cool.

Well, not exactly. In January of 2018, I had the worse pain of my life. I was at the auto show actually, in Detroit. It was the day that my period started, and probably the most traumatizing day ever. I could barely stand and walk for long, my legs were so painful. I could barely walk back to the car, my cramps were out of this world painful; I had to stop every few steps, doubled over in pain, crying. I cried when I was back in the car. After this day, every month when it was that time, I always had severe pain and nausea to the point that if I were out, I had to go home and rest for the day. I still was not sure what I was going through.

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So I had a series of ultrasounds, they all showed the same polycystic ovaries, occasionally I had a larger cyst that would eventually rupture (which that alone can be painful). The summer of 2018, I had a follow-up appointment and ultrasound. This is when I actually had a "cancer scare".

My PA told me that there seemed to be increased blood flowing to my ovary and this is usually a sign of cancer. Her words. I had to get blood work done to test for ovarian cancer, a test called CA 125, which was normal. Though I've been told the test is not very reliable in testing for early stages, but that's neither here nor there.

I had a repeat ultrasound that showed I actually had a hemorrhagic cyst, which just means there was bleeding into the cyst. This one also ruptured.

At this point, I had been placed on birth control to regulate my cycle. It started off as monthly first, then I was suggested to take it continuous, having a period every 3 months. But my pain continued. My fatigue was worsening and I was always miserable. At one point, after talking with my PA, she told me that I sounded as if I had endometriosis, something that she was familiar with as she had it herself. She referred me to an attending doctor in the office to discuss further treatment such as surgery. That doctor immediately told me he would not do surgery because my treatment would not be any different (birth control continuously so that I don't have a period and pain medication). But surgery is the only definitive way to diagnose endometriosis and at this point I did not want to just assume it was endometriosis and blindly treat it. Not to mention, birth control and Ibuprofen 800 mg was not helping.

So I made an appointment with a different doctor in that office, who was willing to perform a diagnostic laparoscopy. This is the surgery that is performed in order to diagnose endometriosis and it is also a treatment option: if there are lesions found, the surgeon will remove them.

I should also mention that there is no cure for endometriosis. Excision surgery (the removal of lesions during the laparoscopy) is an effective treatment for this disorder however. It can give someone a few years of pain free living. But that is of course case dependent.

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So I had this minimally invasive surgery. I had lesions in areas including the rectum, on the uterus, and ovaries. This is where I was having pain at. My doctor also incidentally found a small fibroid on my uterus, he did not remove that, but he did remove the lesions that he found and sent them to pathology just to be sure because one lesion was suspicious. My pathology came back positive for endometriosis as well.

So it has been a year since this surgery. I stopped taking my birth control in January of this year for multiple reasons but the main one being that I wanted to learn to treat my symptoms with lifestyle changes. To this day, I continue to have painful periods/flare ups but they are not as bad as they were pre-surgery. Of course lesions continue to grow and eventually, a few years down the road, I may have to have another excision surgery.

If you're familiar with Tia Mowry's story, you'll know that endometriosis can cause infertility. It is possible to have children naturally but some women also need help. This has been a concern for me as well, though at this point in my life I am not concerned about having children lol but I also do not wish to wait too long sooooo we will see.

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I wanted to share a bit of my story, in hopes to encourage other women to become in tune with their bodies. Listen to it. On average, it can take up to 10 years for a woman to be diagnosed with endometriosis and that's due to multiple reasons including that this disorder is not talked about as much as well as doctors not taking women serious when we complain of pelvic pain. Your periods should not be painful. You should not be bleeding for days, weeks, months! Pain with intercourse is not something you should have to experience. Listen to your body and find a doctor who will listen to you.

I'm always open to talk more about my experience with this condition and how it has impacted my life so as always, feel free to reach out to me.