March is Endometriosis Awareness Month.
Endometriosis. It’s a disease that you’ve likely heard of but don’t know much about, and this is why the entire month of March is dedicated to raising awareness of a disease that affects so many women. In fact, 1 in 10 women have endometriosis, which is roughly 176 million women worldwide. If you menstruate then you are at risk of getting endometriosis.
Every month the lining of the uterus, the ‘endometrium’, is shed and expelled from the body as a period. It is the shedding of the lining of the uterus that causes endometriosis. Science is not exact on how endometriosis is caused, but there are two common theories.
The first theory is that during menstruation a small amount of menstrual blood is sucked up the fallopian tubes and spilled in to the pelvic cavity. This is known as ‘retrograde flow’.
The second theory relates to women who have had caesarean sections. When the uterus is cut during surgery, tissue from the uterus is accidentally introduced in to the pelvic cavity.
Once the lining has made its way in to the pelvic cavity it then attaches to various organs and begins to grow, becoming endometriosis. Because the tissue is effectively uterine lining, during the monthly cycle hormones stimulate the endometriosis, causing it to grow, break down, and bleed- as it would a period. However, this internal bleeding, unlike a period, has no way of leaving the body. This then leads to inflammation, pain, and the formation of scar tissue, known as adhesions, which act like glue and bind organs together. And because the blood from the endometriosis cannot be expelled from the body, it continues to float around, spreading the endometrium cells, and attaching to more areas of the body.
Endometriosis has been found in every organ and anatomical structure of the body including the kidneys, eyes, liver, brain, bones, heart, skin, and nasal cavity. The only place it has not been found is the spleen. For most women, however, the lower abdominal cavity, specifically the reproductive organs, is the most commonly affected area. And because of this, 30%-50% of women with endometriosis will experience some level of infertility. And that is what happened to me.
I gave birth to our first child by emergency caesarean section in December 2014. We had conceived him after only three months of trying and my pregnancy had been smooth sailing. His birth had been traumatic and I needed to wait for my both my body and mind to heal from the experience before we tried to conceive again.
That time came in March 2016. I was 30 years old. We were mentally ready for another child, our son was finally sleeping through the night, and I felt that my body could handle whatever came our way. Luck, however, was not on our side. In April 2017, after 13 months of trying to conceive, after countless tests, both non-invasive and invasive, I underwent a Hysterosalpingogram- a radiologic procedure that investigates the shape of the uterine cavity and the shape and patency of the fallopian tubes. The results were instant and conclusive. I was infertile. We were devastated.
After our initial shock wore off and we had wiped away our tears we were given two options; We could do IVF or I could undergo exploratory surgery to try and find the cause of my infertility. We wanted a baby, yes, but we also wanted answers, so we opted for the exploratory surgery.
On June 28, 2017 I was wheeled in to surgery. On June 28, 2017, I was diagnosed with extensive endometriosis of the uterus and fallopian tubes, and endometriosis of the ovaries, bladder, and bowel. The endometriosis had grown around my fallopian tubes like vines and had bent and twisted them so badly that sperm had zero chance of getting through, and this was the cause of my infertility.
I was lucky. I can say that now. Looking back, I didn’t feel lucky. I was infertile, I had been diagnosed with an incurable, chronic disease, and I was told that the endometriosis that had been removed during my surgery would likely grow back. But now, 9 months on, I know I’m one of the lucky ones. I’m lucky because my endometriosis was discovered accidentally after only 7 months of tests. In the United States it takes an average of 10 years for women to get a diagnosis from the onset of their symptoms. In the United Kingdom, it takes 7.5 years for a diagnosis. There are many reasons for this.
Symptoms vary drastically in each woman and symptoms can mimic those of other illnesses. Often women are diagnosed and treated for other illnesses before discovering that it was endometriosis all along.
Endometriosis can only be officially diagnosed visually during surgery; It does not show up on ultrasounds or x-rays. Because it needs to be sighted to be diagnosed, doctors will only operate as a last resort, meaning women can live for years with horrendous pain and life altering symptoms before their doctor will consent to surgery.
The saddest reason of all, in my opinion, is that many women simply aren’t believed. They are brushed off by their healthcare providers and are told that the pain they are experiencing is in their head and that pain during a monthly cycle is normal. It is not normal.
There is a huge lack of knowledge about endometriosis, both in the health sector and in the public arena, and because diagnosing this disease is not as simple as a blood test, it is often up to the patient to push for further testing. With knowledge comes power, and the more awareness and information people have of this disease, the more confident they will be to advocate for themselves, for their daughters, and for their friends and family.
Symptoms of Endometriosis:
• Painful periods
• Pain during intercourse
• Pain during bowel movements or urination
• Excessive bleeding during menstruation
• Bleeding between periods
• Chronic Fatigue
• Also, diarrhea, constipation, bloating, or nausea, expecially during menstruation.
Bravo Birth DFW would like to extend a huge thank you to guest blogger, Alex Hughes, for sharing her experience with endometriosis. Alex is a New Zealander currently living in Singapore with her husband and their three-year-old son. She’s a cinephile, bibliophile, gourmand, and traveler extraordinaire. When she’s not out having adventures and eating delicious food, you can find her organizing or doing something nice for a friend.