Endometriosis

In my previous post, I mentioned that I have been dealing with a progressively worsening illness. I have Stage IV Endometriosis (endo). One in ten women have endo so it is not something unusual, it is just not a very well known disease.

I should stop to give a quick disclaimer: I am not a medical professional and any info on this blog is meant as a record of my own experiences. I am sharing what is going on in my life to spread awareness and understanding, not for sympathy. I am a tough lady.  :)

Alrighty. So, what is Endometriosis? To sum it up, endo is the growth of endometrial cells outside of the uterus that cause irritation and pain through cysts, scarring, and adhesions. Endo can also cause infertility, chronic pain, and fatigue which can bring along depression, anxiety, and isolation.

I am a visual learner so when I was researching this disease, I found the following video from the World Endometriosis Society. It shows and describes endo pretty clearly.

Every woman with endo experiences it differently. Some women with Stage I endo have huge amounts of pain while some women with Stage IV don't find out they have endo until there are complications with fertility.

My story with endo may have started when I was in high school. I had extremely painful periods. By my senior year, I wanted to be put on birth control to help with periods and acne. The pain lessened and I went on with my life. There were a few rough months here and there but for the most part, I just chalked it up to normal pains that every woman has to go through.

A little over three years ago, I got off birth control with the hope of having a child with my husband. I got off all medications, started taking prenatal vitamins, and started researching and planning. The painful periods were back but they were manageable. After 6 months with no luck, I started tracking my cycles more closely and doing more research. A year passed, still nothing, periods getting a little worse. At the year and a half mark, I talked to my general doctor when I was in for a yearly exam. Since babies were on the brain, I didn't talk about period pain much, I just wanted to know the next step to achieve pregnancy. She sent me to see a doctor at a women's clinic and I was given some advice, told that stress might be making things harder, and that if I still had no luck after another year, I should return for tests.

A year later I returned and one test was done that turned out to be inconclusive. By then, I was losing a little hope and started questioning myself. If I am not pregnant by now, does that mean I am not meant to be a mom? Is something wrong with my body?

It turns out there was. Around the three year mark of infertility was about the same time that my period pain started interfering with my life. Even with the highest dose of pain meds, I was getting pale, shaky, and dizzy from the pain. The breaking point came when I could not stand up straight at work and had to lay down in the break room so I wouldn't pass out. It finally made me question if the period pain could be connected with infertility. As I always do, I researched the heck out of my symptoms and found that endometriosis fit pretty closely.

I contacted the women's clinic with my idea of what could be the issue. My doctor confirmed that it seemed like the correct diagnosis but the only way we could tell for sure was to do a diagnostic laparoscopy - an outpatient surgery where they fill the abdomen with air and then make a few small incisions to peek inside with a camera. I had the surgery in January and my doctor took photos while checking things out. To keep things more light-hearted and not so graphic, I drew simple illustrations of what things look like in there.

My doctor told my husband that the endo adhesions were basically trying to give my organs a 'big hug'. They have completely surrounded my uterus, my right fallopian tube and ovary, part of my left fallopian tube, and some of my bowels. I also have one chocolate cyst (filled with blood) and quite a few other cysts.

With the endo being so extensive, I was recommended to a fertility specialist that is highly skilled in cases like mine. She met with my husband and me recently and told us it would be smart to have surgery as soon as they could schedule it. On May 21st, she will try to remove all the cysts and adhesions with laparoscopic robotic surgery. The healing time will be 2-3 weeks. Once I am feeling well enough, I have been instructed to try for pregnancy before the adhesions grow back. With Stage IV endo, fertility is not a promise but In Vitro or adoption are definitely options.

I am ready for the surgery and I am hoping that a lot of my symptoms lessen. Though I am tough, things have been getting progressively worse. The amount days in between times of pain is getting smaller and new pains are popping up. I am also almost always exhausted. It is not easy to sleep when in pain and I have woken up with nightmares and clenched teeth. I am tired of missing workouts and I am tired of my stomach bloating from the toxins. I am leary of taking on too many events/social commitments outside of the house because I don't want to let anyone down by withdrawing or go out and act like a basket case because I am in pain.

I know things will get better, though, and I have an amazing support group. I am glad that there is an explanation for my infertility and pain. I have been making art as personal therapy and a way to process all that my body and brain are going through. Even creating the illustrations and writing this out has helped a lot. My heart goes out to all my friends that have invisible illnesses like Endometriosis, Ehler's Danlos Syndrome, Chronic Fatigue or Pain, Fibromyalgia, Depression, IBS, Lupus, the list goes on. You are all so strong!

Thanks so much for taking the time to read this very personal blog entry!

*Read about my second surgery, here. :) *