You are the face of endometriosis. If there was a poster or billboard of what endometriosis was, it would have your face on it.
This is what my gynecologist/endometriosis specialist, Dr. Liane Belland, told me in October.

Endometriosis is a disease. It affects 1 out of every 10 women and I am one of them.

What is Endometriosis?

The following information comes from the Endometriosis Association.

Endometriosis is a medical condition that occurs when the lining of the uterus, called the endometrium, grows in other places, such as the Fallopian tubes, ovaries or along the pelvis. When that lining breaks down, like the regular lining in the uterus that produces the menstruation, it has nowhere to go. This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: each month the tissue builds up, breaks down, and sheds. Menstrual blood flows from the uterus and out of the body through the vagina, but the blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation – and can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.

Endometriosis is no joke. There is no cure. It is excruciating, debilitating and hands down nothing I would even wish on my own worst enemy. It affects every aspect of life. Day-to-day movement, thoughts, and actions. Beyond the day-to-day it affects my future; my fertility, my job security (as I miss a lot of work lately), and my overall mindset as I wonder if I will ever feel “normal.”

Symptoms:

  • painful periods
  • pain in the lower abdomen before and during menstruation
  • cramps one or two weeks around menstruation
  • heavy menstrual bleeding or bleeding between periods
  • infertility
  • pain following sexual intercourse
  • discomfort with bowel movements
  • lower back pain that may occur at any time during your menstrual cycles

Most people I tell that I have this disease have never heard of it, or have any idea what it is. I want to change this. Awareness is half the battle. The more people who understand, the more research there is, and the more options there are.

Diagnosis is difficult, and can only be doing through a laparoscopic surgery, which is hard to get into because symptoms can sometimes be treated with medication (i.e. birth control and anti-inflammatories) and once it’s even diagnosed you have to fight to see a specialist for further treatment, heavier medication, and further surgeries.

When I was 12 I had my first period. While I can’t really recall all the details and timeline, what I can remember is excruciating pain, bleeding that would last 3-4 weeks, no menstrual cycle for a couple of months at a time, and then having the next one come back stronger, more painful, and for longer. I missed numerous days of school, just thinking I was cursed with awful periods. I began birth control when I was 14 to regulate my cycles.

That did the trick for a while, once we found the right pill (I take Yasmin 21 now, and have for years). Things were manageable and I didn’t think a lot of it. Once I got into college, I started having terrible stomach pains on my right side. I went in and out of the emergency room over the next couple of years, getting morphine through IV and sent home. At one point at work, the pain shot through me like a burning branding iron and knife, like my insides were exploding and I dropped to the ground. After spending another night in the ER, I learned I had just had a cyst rupture. Painkillers and sent home.

In 2010, the pain was again so bad I was back in the ER, and they were then concerned it was my appendix, so it was then removed. Of course, it wasn’t inflamed and the surgery wasn’t necessary.

The pain continued off and on. In 2012 I saw a gynecologist who performed my first laparoscopy and diagnosed me with endometriosis. She burnt out some of the tissue, but as my ureters and bladder were also covered she didn’t touch the or any other major organs. To continue to manage the pain, she prescribed me to take my birth control back to back – i.e. no breaks like you normally do to allow a period to occur.

I have been following that process for 5 years now. The constant hormones have been wreaking their own havoc, and the pain is still not gone. Over the past month, the pain has been so high I have missed 1.5 weeks of work – more than I missed all of last year. I have tried two different anti-inflammatories, lie on my heat pad constantly, and question when this pain will end.

Right now? My option is an extremely invasive surgery that requires the lasering and removal of infected tissue, the shuffling and moving of organs, and hoping they can get it all. Recovery can be anywhere from 1-6 weeks dependent on the amount of infected tissue and what organs are affected. There is also no guarantee that this will end my pain. I will be writing again about this topic once I have surgery and experience the recovery time.

In the meantime, I have to take anti-inflammatories, continue taking my birth control, try to exercise when I can as the endorphins released from exercise can block pain receptors. Getting to the gym can often be a challenge in itself, and I’ll admit I haven’t been able to go very often.

I was lucky enough to discover and read Kristyn’s blog yesterday and reached out to her about her experience. She directed me to a couple of Facebook support groups, and her story was shared on CBC last night. I am so grateful that she is she to share her story and that it is getting so much attention! This is what is needed; awareness. Endometriosis is hard. When a disease can be seen on the outside, people understand and show compassion. When the disease is internal, there isn’t a lot of information available, and people don’t understand, it is a lot harder for the person who is suffering to make sense of it all.

March is Endometriosis Awareness month. Awareness and understanding need to happen. I want to make a change. Even if this isn’t something you suffer from, your aunt, niece, boss, coworker, best friend, or your third cousin twice removed could be suffering. Please understand and show compassion. I don’t want sympathy. I want a cure.

On March 19, 2017, the Langevin Bridge in Calgary was illuminated in yellow; raising awareness for Endometriosis. I took these photos to help spread a cause that means so much to me.

Advertisements