In honor of Endometriosis Awareness Month – I’m taking the time to teach you about endometriosis and open up about my diagnosis and struggle
What is endometriosis?
Endometriosis is an often painful condition where cells similar to the ones which line the uterus grow on other parts of the body, attaching itself to other pelvic and abdominal organs causing scarring, lesions, adhesions and cysts. Endometriosis growth follows the pattern of the menstrual cycle causing very painful cycles along with the following other common symptoms: severe pelvic cramping, heavy bleeding, infertility, pain during sex, painful ovulation, urination and bowel pain, constant fatigue, bleeding/pain between periods, digestive problems, periods lasting longer than 7 days and ovarian cysts.
Why is endometriosis awareness important?
Endometriosis awareness is important because it is often considered the largest women’s health crisis of our time. Let me share with you some staggering statistics:
- More than 1 in 10 women (176+ Million worldwide) are affected by endometriosis
- 8-10 years is the average wait time for diagnosis
- 2-3 times higher risk if a close relative has it
- 10 hrs/week in lost productivity per women
- $119 BILLION annual US economic loss
- 30-50% infertility rate
Sources: The Endometriosis Foundation of America, CNBC, womenshealth.gov, endometriosis.org
Originally, back in 2012, I was diagnosed with what they thought was PCOS. PCOS is a hormonal disorder causing enlarged ovaries with small cysts on the outer edges. When looking at ultrasound images, PCOS and endometriosis looks nearly the same. At that moment, without a blood test to confirm whether my condition was really PCOS vs. Endometriosis, I was prescribed 1500mg of metformin to treat PCOS. But something didn’t seem right. I was feeling more fatigued, I was losing weight rapidly, I had major digestive issues and some days I felt delirious. I kept calling my doctors office to confirm my dosage of medicine to ensure that I was supposed to be on it (without monitoring my blood sugar levels) and they kept telling me yes, and explaining to me that 90% of women with PCOS are insulin resistant so I just need to continue taking my medicine as prescribed.
About a year and a half into treatment for PCOS, I had lost nearly 25 pounds, was nauseous almost every day and had severe stomach pain. Two days later, I was in the hospital with pancreatitis, a severe life-threatening condition, caused by the glumetza (brand name of metformin) and was immediately asked to discontinue my medicine.
Within two weeks of discontinuing glumetza, my white blood cell count was back to normal and I was slowly gaining weight back (something that I physically could not do before even when I tried).
I ended up switching doctors, going to see a reproductive endocrinologist who decided that an exploratory laparoscopic surgery was our best bet. With that, we discovered that I actually had endometriosis and did not have PCOS (which explains why I was so sick while on glumetza).
Struggling with infertility
One of the most unfortunate symptoms of endometriosis is infertility and something that I struggled with the past two years. After a year of trying to conceive (TTC), I followed all the correct fertility protocols, including one of the most painful procedures that I’ve ever experienced in my entire life, the hysterosalpingogram aka ‘the bubble test’. It was between this, and getting another exploratory laparoscopic surgery to make sure my fallopian tubes weren’t blocked.
An X-ray hysterosalpingogram (HSG) is the traditional method for testing a woman for fallopian tube blockage. This technique, introduces a dye into the uterus before generating an X-ray of the patient’s body.
The bubble test came up negative and I had zero blockage – which was a good thing, right? To be honest, I was a little devastated and even more confused as to why I couldn’t get pregnant. After this, my husband ended up getting tested and everything checked out okay – so why were we having so much trouble?
We eventually sought out treatment and tried a low dose of chlomid, which ended unsuccessful. We then upped the dosage of chlomid the following month, which I completely hyperstimulated and developed 24 follicles (eggs) that eventually ruptured and filled with blood. So here I was again, in the hospital with severe pain, internal bleeding with zero answers. After about 3 months of recovering from residual cysts and being put back on birth control to get rid of them, we tried femara. With femara, I had about 6 healthy follicles, but again, no luck. We continued with femara for a couple more months, adding progesterone suppositories to the mix because of my thin lining and an HCG shot to release the eggs at the correct time. Still….. no luck. At this point, I was completely devastated, still confused and had no real answers to why I couldn’t get pregnant. I was at a loss. After this, the fertility doctor wanted to try a ‘combination’ treatment and suggested that we do an IUI but honestly, I was so devastated and I needed a break.
Fertility treatment happens so fast. One month you think you’re on the right track, excited, everything is going right and then you get the phone call that your blood pregnancy test is negative. Immediately after the negative outcome, the doctor will begin talking about what is next, when to come back again, when to start the new drugs…. without really giving you time to process why the last month didn’t work. The process happens this way mainly because you typically start medical treatment on cycle day 3, giving you only 3 days to process that your miracle didn’t come and that you have a new treatment protocol starting in two days. This process was hard for me to follow. It was almost like I needed a month in between each treatment to just process the fact that it didn’t work.
Because of these devastating months of pins, needles, drugs, scans, etc. I needed a break. My husband and I decided to spend the next few months focusing on our health both mentally and physically. We decided to try a vegetarian diet and within two months of this new diet – WE WERE PREGNANT!!!!! (I’m not claiming that going vegetarian will work for you and it could not have had anything to do with our situation – we will never know – but it happened) We seriously couldn’t believe it. We found out mid-week on a trip to Jamaica and were completely shocked. And I was equally as bummed that I could no longer partake in unlimited boozing, haha.
All of this news was so exciting but, if you know me you wont be surprised that I immediately got scared and worried that my progesterone levels were too low because of my past struggles and knew that low progesterone levels would most likely result in a miscarriage so I called my OBGYN asking for a blood progesterone test to make sure my levels were okay. My levels were at a 12 and they like them to be at 16 so I was put on 200mg of oral progesterone per day for the first trimester and every day I prayed that things would follow through.
During this pregnancy, I struggled with random spotting, which is absolutely terrifying, but after week 15 it seemed to subside and everything was fine every time I frantically ran to the hospital for a scan. (THANK GOD)
Today I am 17 weeks and 4 days with a healthy baby girl 🕊
Moral of my story is – against all odds – don’t give up. Stay strong through your struggles, remember that we all have a fighting chance and it’s okay to step back and give yourself some time both mentally and physically to recover from the tough months. Everyone’s story is unique and it’s okay to give yourself time to process your situation before quickly moving into something you’re not sure of.