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| Enjoying the views in the Sawtooths (Idaho), photo credit: Paul Jantzi |
Over the last two decades, my body has been plagued with the pain, discomfort, and abnormalities of Endometriosis. Many people have no idea what Endometriosis is and often just correlate it with bad period cramps.
So what is Endometriosis?
"Endometriosis is when the tissue that makes up the uterine lining (the lining of the womb) is present on other organs inside your body. Endometriosis is usually found in the lower abdomen, or pelvis, but can appear anywhere in the body. Women with endometriosis often have lower abdominal pain, pain with periods, or pain with sexual intercourse, and may report having a hard time getting pregnant. On the other hand, some women with endometriosis may not have any symptoms at all." (Source: http://obgyn.ucla.edu/endometriosis)
There are 11% of us suffering from this benign disease, that isn't as simple as this definition that is given. We all have a story to tell when it comes to our journey with Endometriosis, we have are fears, our frustrations, and often feel like prisoners in our own bodies. Personally, my biggest frustrations with this disease is the fact that there is so little research done and that doctors often do not take women who are truly suffering seriously. And the scariest thing that is starting to come out? As a person who suffers from this disease, research is starting to find that those who suffer from Endometriosis are 30% more likely to have Ovarian and Uterine Cancers.
Real Talk.
My journey with Endometriosis started at 12. It was around this age that I started getting painful, lower abdomen pain that my mother called "stomach aches" and had to leave school at least once a month early. I continued to have the weird pain on and off for weeks. At 13, I had my first menses. The pain associated with my menstrual cycle was indescribable, I knew I was suppose to get cramps and be bloated. But damn, this seemed like more than I signed up for. I would spend the few days before and during feeling like I was dying. My symptoms included: vomiting, shaking from pain, diarrhea, distended stomach, large blood clots, and headaches. Being only 13, I thought that this was normal and just what a woman had to deal with.
Three years later, with the symptoms seeming to get worst, I finally went to the doctor. The 16-year-old virgin me was less than thrilled to get a pelvic exam by my childhood doctor. In the end, my doctor attributed my pain and symptoms to "bad cramps" and decided that it would be best to put me on a birth control that regulated my cycle to every three months. At 16, I was okay with this answer and hoped that I could live a little bit more pain free and unaffected life.
I wish I could say that "cured" me and everything was rainbows after that. I still had a lot of pain and it continued to really affect my life. If I was in pain and didn't have to go to work or school, you could find me in bed. My body was in pain 90% of the time and if you have ever suffered from an injury or anything that causes you intense pain, you know how exhausting it is. I never had energy and was always tired. I lived off pain medication and my heating pad was my best friend. At 19, the not-so-virgin me started having a lot of pain and discomfort during intercourse. I did not think much about it for the first few months, but soon realized the way I was feeling was not normal.
So, I went to the doctor. After conducting the exam, the doctor let me know that he had felt a mass in my ovary. (Ummmm WHAT?!) He let me know that I could need to get in for a transvaginal ultrasound ASAP and for the first time in my life, he gave me a referral for a specialist. This was all very overwhelming at 19. At this time, it wasn't quite clear if I had a cancerous mass inside of me. The next few months were spent with ultrasounds, doctors appointments, and follow ups. Not only was there a lemon sized mass in my left ovary, the ultrasound also revealed two lime sized cysts.
The specialist had decided that surgery was the only option to figure out exactly what was going on and that the mass and cysts needed to be removed. This meant, that I would be getting major surgery that they called, "exploratory". I would be getting my entire stomach cut open while they tried to figure out what was going on inside. Now, I have a large scar on my lower stomach to remind me of this surgery.
At the time, I was more worried about the IV. Maybe I was in denial, but I didn't realize how serious the surgery was at the time. The unknow is scary. As I was wheeled into surgery, my specialist let me know that there was 50/50 chance I would come out of surgery with any of my reproductive organs. No big deal right? I woke up crying from surgery (I guess that's a normal thing). When I was alert, they let me know they were able to save both my ovaries and that removed the mass that they referred to as a dermoid tumor. My specialist referred to the dermoid tumor as my vanishing twin, which is pretty gross, but interesting. She was also able to remove my two cysts successfully.
As any 19-year-old would think, I was cured, right?
Every 4-6 months I was at the specialist for appointments and more ultrasounds. My pain didn't go away, over the next two years, they suggest I work out more and tried different birth controls. Helpful right? The pain continued and they eventually found another lime sized cyst that had to be surgically removed and my family doctor would be in the surgery. Surgery happened, but when I woke up they let me know that the cyst must have burst. They were in awe that I hadn't gone to the emergency room when this happened because it is a very painful experience. At this point, I wanted to scream at them. I was in pain all the time, so what was the difference? As a consolation prize they gave me a bunch of photos of my ovaries and the assisting doctor let me know that he had never seen someone my age with Endometriosis so bad.
*I do want to note the expensive of all of these medical procedures and surgeries. My exploratory surgery was about $10,000plus, transvaginal ultrasounds cost about $1,000 a pop, and my second surgery was about $7,000. I feel very blessed that my parents were able to help me with both of these surgeries. My father is in the military and my mother works for a college, so this greatly off-set the cost. If I did not have insurance I don't know how we would have afforded it.
EndometWHAT?
This was the first time I had ever heard this term, Like any millennial, I googled everything I could find about Endometriosis. Nothing seemed to really change over the next three years. I had accept that fact that pain and discomfort was just a part of my life. Also, I had to accept that fact that I was slowly destroying my kidneys, stomach, and liver from all the ibuprofen I took. Throughout these years, I was shocked at how easily doctors would give me prescriptions to hardcore pain meds. Carrying a child was something I wondered about over this time period too. Never have I had a strong desire to have a child, but I at least wanted the choice.
Three years went by, and I finally got a great team of doctors in Tacoma (shout out to Bonnie Hill and Dr. Szeggti at Franciscan Women's Health). They finally made me feel heard and validated with what was happening with my body. I was so tired of feeling like a prison in my body and feeling held back by this disease. We discussed options of birth control, hormone therapy, and a surgery to remove the scar tissues.
My personal feelings towards hormone therapy are no. I could not imagine trying something that may or may not work with some pretty terrible side effects that can last forever. We changed my birth control for like the billionth time. Finally, I decided I wanted to see if another surgery would help and I opted to have the HSG Test in my Fallopian Tubes to see if I was even able to carry a child. The surgery didn't have the most positive results. Again, I was told that the severity of my endometriosis was very uncommon for my age and they were still baffled that there were no other people in my family suffering from it. The HSG test showed that I had complete blockage and that the chances of carrying a child or even having a healthy pregnancy was probably not in the cards for me. And finally, I was officially diagnosed with Endometriosis.
How does a 25-year-old deal with this?
I didn't.
It has taken me years to come to terms of this disease. I have learned to accept that no one really has any clue what Endometriosis is. All my doctors appointments mean being an advocate for myself and making sure I understand all my options.
At 27, I was considering a full hysterectomy to escape the pain and symptoms.
Instead, I was given the last resort option before the hysterectomy. The Mirena IUD had been showing some promise for women with Endometriosis. The only catch, it can be extremely painful to place in women if they haven't had children. I decided that this sounded like a good option and scheduled my appointment. I decided it was worth the try.
For the past five years, I have put a band aid on the majority of my Endometriosis issues. The first four years of using the Mirena were great, I noticed the cramping and pain went down significantly. I rarely had a menstrual cycle and my endo-belly (that embarrassing distended tummy that comes with Endometriosis). I felt like I was finally living a fairly healthy life.
Until this past year (the last year before I am due to get my Mirena replaced) things have gotten bad again. My pain has been reoccurring and I seem be having a period every other week. My symptoms are exhausting and can leave me bed ridden. My immune system is significantly lowered when my body is dealing with pain and I have been sickly. Many researchers have found that patients with Endometriosis are more likely to have multiple sclerosis, lupus, and rheumatoid arthritis. Now, I feel like I am starting all over again. My biggest fear is that I am going to get my IUD replaced and my symptoms wont decrease. I'm scared that I may be looking at having a hysterectomy in the next year.
Yes, I get upset. It was hard to deal with not even having the choice to have a child. I'm thankful that if I ever decide I want to have a child, I could always adopt. I get made when I have bad reactions to food, then I remind myself of those who suffer from Crohn's Disease. I rarely feel bad for myself, because life could be much worst. Endometriosis has made me a stronger person. Although, I don't quite know what the next chapter in the journey will look like, I like knowing that I do have some choice and that I have a support system.
Now, that I have basically shared my medical history, I do want to say that there are a lot of things that I have done that have helped me greatly.
1. Consistent Physical Activity/Working Out
I cannot stress how important it is to work out at least 3 to 4 times even when you feel like your uterus is going to fall out. I try to make sure I do something every day, even if it's just walking my dog for 45 to 60 minutes. Just keep moving.
2. Diet, Diet, Diet
About a year ago, I got sick of all the stomach issues I have dealt with. I started researching on my own and found that a plant based diet was recommended for women who suffer from Endometriosis. my I cut ALL meat (including fish) out of diet. We eat Vegan 80% of the time ( I can't give up cheese and eggs). I try not to eat any dairy prior to my cycle and during. I still love my candy and coca cola, but try to not eat processed food. Changing my diet has helped so much with my bloating and pain.
For Reference:
https://fightyourinfertility.com/69/10-deadly-foods-for-endometriosis-that-you-eat-everyday
3. Alcohol Consumption
I rarely drink. I enjoy a glass of wine here and there. Basically, the liver is super important to filter out all the bad toxins and bad estrogens. Drinking excessively basically aggravates the Endo.
4. Allow Your Body to Rest and Feel Pain
This is my own thing. I use to take pain meds like candy, but it really seemed to prolong the pain. If I'm having a bad flare up, I do what I need to do the day and am okay with watching Netflix. Pain is exhausting and your body needs to rest.
Endometriosis sucks.
I am not going to lie. I hope eventually to live a pain free life, but I don't know how realistic that is. People don't like talking about periods, vaginas, ovaries, and uteruses, but it's real life. Life isn't perfect. People are all on a journey and I think it's important to share so we become more comfortable with these topics. As well as, having compassion for those with diseases and other ailments. Life is tough, but it is easier if we support each other.
