“Hi God. Are you there? It’s me, Caitlin. It’s been 230 days. I am ready to become a woman. Please bless me with my period soon. Thanks so much. Talk soon.”
Around the 281st day of reciting my daily prayer, give or take a day, I was “blessed” with my first period in a J.C. Penny's bathroom while out with my aunt. I was 12 years old and filled with joy. Leading up to that moment, I had been reading Judy Blume’s "Are You There God? It’s Me, Margaret" repeatedly. Like many girls my age, Margaret's journey into womanhood resonated with me deeply. I was one of those kids who couldn't wait to grow up.
However, it didn't take long for me to realize that my periods were different from my peers. They were heavy and sometimes occurred more than once a month. They were also highly unpredictable. To make matters worse, my cramps were excruciating. In 2008, I was diagnosed with endometriosis.
What is endometriosis:
Endometriosis is a medical condition in which the tissue that normally lines the inside of the uterus grows outside the uterus. This misplaced tissue can grow on the ovaries, fallopian tubes, outer surface of the uterus, and other organs in the pelvis. It can cause pain, heavy periods, fertility problems, and other symptoms. Endometriosis affects women of reproductive age and is estimated to affect around 10% of women worldwide. It is a chronic condition that requires medical management and may require surgery.
Endometriosis can have a significant impact on a woman's life in several ways:
1. Pain: Endometriosis is often associated with severe pelvic pain, especially during menstruation. This pain can also occur during sexual intercourse or bowel movements, and it may worsen over time.
2. Infertility: Endometriosis can affect fertility by causing scar tissue, inflammation, and the formation of cysts in the reproductive organs. This can make it more difficult for a woman to conceive.
3. Fatigue: Many women with endometriosis experience chronic fatigue, which can make it challenging to carry out daily activities.
4. Emotional impact: Living with a chronic condition like endometriosis can take a toll on a woman's emotional well-being. It can lead to feelings of frustration, sadness, anxiety, and depression. It may also affect relationships and social life.
5. Disruption of daily activities: Endometriosis symptoms can interfere with a woman's ability to participate in regular activities such as work, school, exercise, and social events. It may require frequent doctor visits and medical treatments.
At the age of 19, I underwent my first D&C procedure. A D&C, or dilation and curettage, is a surgical procedure used to diagnose and treat various gynecological conditions, including endometriosis. During the procedure, the cervix is dilated, and a curette is used to scrape the lining of the uterus. In the case of endometriosis, a D&C is performed to remove endometrial tissue and obtain a tissue sample for further analysis. This procedure can assist in confirming the diagnosis of endometriosis and guiding treatment.
The amount of tissue that my gynecologist was able to remove during the D&C was astonishing. Additionally, I was informed that my uterus resembled that of an elderly woman, which unfortunately meant that conceiving and carrying a child to full term would likely be challenging for me. Hearing this news at such a young age was devastating. However, I was fortunate to have the support of my boyfriend at the time, who is now my husband of 11 years. My family and friends also played a significant role in providing comfort and encouragement. My mom accompanied me to all my appointments and reassured me that I was not alone in this journey.
After the D&C, my endometriosis made a comeback within a few months. I was a sophomore in college. The following years were incredibly challenging. Some months, my menstrual cycle would be regular, but in others, I would endure bleeding for 2.5 weeks out of the month. However, during my mid 20s my gynecologist prescribed continuous estrogen birth control, which proved to be a game-changer. This involved skipping the placebo pills in the fourth week, effectively bypassing my period entirely and starting a new pack of pills. Finally, I experienced relief and a sense of normalcy in my life after years of constant bleeding and agonizing cramps. I regained my energy and found a renewed lease on life. While birth control wasn't flawless, it made a tremendous difference. During that period, I had minimal endometriosis growth or shedding. However, in the back of my young mind, two thoughts lingered:
1) Would I ever be able to conceive a child?
2) Was it really healthy to be on continuous birth control until menopause?
These questions would be answered sooner than later.
In 2013, just 3 months shy of my wedding day, my girlfriend and I decided to take pregnancy tests together. She was worried about being pregnant, but her test came back negative. However, to our surprise, my test showed two distinct NEON pink lines. It turned out that I was 7 weeks pregnant, completely unaware of it because I wasn’t having regular periods. Yep, I was the 1%.
I gave birth to my daughter in January of 2014. Luckily I had a completely healthy pregnancy. I felt a huge sense of relief that I could get pregnant and carry out a healthy pregnancy.
I gave birth to my son in October of 2016. This pregnancy was planned. Yet again, healthy and normal pregnancy with zero complications.
Our little family was complete. But I cannot lie. I was still a little worried about the possibility of being back on birth control till 50.
I was diagnosed with hypertension in my early 30s during my yearly physical examination. However, my GP didn't inquire about my lifestyle or explore possible reasons for the sudden increase in my blood pressure. He simply attributed it to a family history of hypertension and prescribed a low-dose blood pressure medication. This experience left me feeling like doctors were only interested in providing temporary solutions.
That night, I conducted some research and discovered that long-term use of continuous estrogen birth control could significantly increase the risk of developing hypertension, especially if there is a family history. This revelation made me realize the potential connection between my birth control and high blood pressure.
During my annual pap appointment, I had a discussion with my gynecologist about my hypertension diagnosis. I expressed my concerns about the impact of birth control on my blood pressure. It's important to note that this gynecologist is different from the one who diagnosed me with endometriosis some 14 years prior. After getting married and having my babies, I decided to switch to a gynecologist closer to my side of town. This gynecologist never questioned my endometriosis or treatment plan. He simply continued prescribing continuous estrogen and acknowledged that the birth control could potentially contribute to my high blood pressure. He advised me to continue taking my blood pressure medication as it seemed to be effective. Additionally, he mentioned that we could explore alternative options once I turned 35.
It was a cool fall day in 2023. Just a few weeks shy of Thanksgiving. I was 35. At the end of my annual pap appointment my gyno asked me if I had any questions or concerns.
“As you know. I have endometriosis,” I said.
Before I could proceed further, he abruptly interrupted me and began questioning me extensively about my endometriosis. It felt like an intense interrogation as he repeatedly expressed disbelief that I had two children despite having severe endometriosis. He inquired about any and all endo scans and documentation of my D&C, which caught me off guard because he had never questioned me about this before. This had been my gynecologist for years. I provided him with all the information I had, while he sat there scratching his head. I told him I have not had any scans done recently because I had been endometriosis free for years; the birth control was definitely doing the job but I expressed my desire to explore other options. I told him I felt like doctors were putting on one bandaid after another. To my astonishment, his response was far from satisfactory. He suggested that he has doubts about my endometriosis diagnosis, stating that no further actions would be taken until there was certainty on his end. Again I can’t stress this enough, he had been treating me for YEARS. He proceeded to take me off estrogen birth control that day and prescribed a progesterone-only pill as a "test" of his theory. He informed me that if I truly had endometriosis, I should experience irregular bleeding. He also took me off my blood pressure meds. He instructed me to follow up in around six months and then left the room. I was dumbfounded honestly. That was the end of our conversation, and unfortunately, it marked the beginning of a troubling situation.
Two weeks after discontinuing estrogen birth control, I experienced a continuous and excessive bleeding episode that lasted for a staggering seven weeks. To put it bluntly, it was more than just heavy bleeding – it was a damn blood bath. The amount of blood I passed was comparable to what one might experience after giving birth. In fact, it exceeded that volume. I found myself going through five to six super maxi pads every day, and I was passing blood clots as large as my fist. The intensity of the bleeding was so severe that I would feel lightheaded and on the verge of fainting whenever I took a shower, necessitating my husband's assistance. The situation was absolutely absurd, and when I reached out to schedule an appointment with my gynecologist, I was informed that I needed to bleed a longer duration before seeking further medical attention. However, they did agree to move up my appointment to three months from the initial scheduled date. After hanging up the phone, I was left feeling defeated, realizing that there was no way I could endure another six weeks of continuous bleeding. It was clear that seeking immediate medical attention would be necessary, possibly even requiring a hospital visit.
And this my friends was only the beginning.
Part 2 will be out early next week!
Ummm 🤨 😱 you left me speechless and requiring to know more. You are a warrior.. I hope you feel that! This may only be something 10% if women experience… but that’s 10% too many. I’m so sorry for all of your experiences