How I learned pain during intercourse isn’t normal: My endometriosis journey

I was thirty-two, single, and working in an office. Every morning, the girls gathered together for our daily chat. During one of those chats, the topic of menstrual cycles came up. As we commiserated about our monthly visitor, someone mentioned the word “endometriosis.” We all stopped talking and listened attentively. 

My coworker’s endometriosis story stopped me in my tracks…

Having never heard of endometriosis, I was intrigued. She went into great detail about her symptoms: pelvic pain, awful periods, and painful intercourse. She shared that she was initially put on the Pill to calm her painful periods, even though it was endometriosis all along. By the time she actually got a diagnosis, surgery was her only option. Seemingly miraculously, she was relieved of her symptoms after surgery. Still, the extent of the damage caused by endometriosis rendered her permanently infertile. I was shocked at how someone so young and healthy-looking on the outside was so sick on the inside. She was not even thirty years old.  

Listening to my coworker’s story, my emotions were all over the place. How tragic to become infertile at such a young age, I thought. I will not let that happen to me. I planned to schedule an appointment with my doctor that week. Without a doubt, I didn’t want “endometriosis” to take away my fertility. 

…but only temporarily

But as the days and weeks went on, I forgot my coworker’s endometriosis story and went on with my life. It was a sad story, but it was her story and not mine. Looking back, I wish I had not dismissed her experience so quickly. If I had taken it more seriously, would my own endometriosis have spread as much as it did?

My fiancé and I were proactive about learning to chart so we could conceive

My husband and I met in our early thirties. Not being naïve, we knew our fertility window was coming to an end. When we got engaged, I was thirty-four years old. We became proactive and looked into natural family planning (NFP).  

After looking at various options, we chose the Billings Method. Billings is an NFP method that relies solely on a woman’s daily mucus observations. These observations help a woman track when she is fertile (ovulating) or and when she is not throughout her cycle.  

Once I had charted for three months, we followed up with our instructor. She looked over my chart, we asked questions, and finagled some minute details. We were told my cycles looked fairly normal. There were no noticeable red flags. We both left the meeting feeling good and hopeful! 

My cycle became irregular, but there were good reasons for that

I continued charting throughout our engagement. Irregular cycles came up, but with so many upcoming big life changes (getting married, leaving my job, moving to a new city, etc.) it was only expected that my cycles would respond exactly like they seemed to. I wrote it off, like so many of us do, to stress and considered it normal.  

We conceived, but lost our first child to miscarriage

We got married in August of 2011. In the Spring of 2012, and closer to our move, we started our “let’s get pregnant” season. We gave ourselves six to twelve months to conceive. In March of 2013, after almost a year of trying to conceive, we miscarried. It rocked our world in the worst possible way. 

Having not yet found a doctor after our recent move, I scrambled to schedule an appointment with whoever I could find. I was met with a doctor who barely examined me. She just smiled and listened to me as I told her about the miscarriage. She looked into my tearful eyes and said: “Don’t worry honey! It happens! Listen, I was forty-one when I got pregnant! You have lots of time! At least you know you can get pregnant.” 

I left the office in tears and never went back. I felt unheard and not taken care of. At that time, I realized the importance of choosing a doctor that will listen to you and have empathy. 

We switched to the Creighton Method to get a medical workup with a NaPro doctor

Knowing time was not on our side, we switched NFP methods. Billings is great if you want to track your cycles and there are no medical issues. We had medical issues. We looked into the Creighton Method. This NFP method allows a woman to chart her cycles with the help of daily cervical mucus observations. In addition, a series of biomarkers are also incorporated into this method. These biomarkers look at bleeding patterns, types of discharges, lengths of cycles, and any other factors that may cause some interference throughout one’s menstrual cycle.  

Along with the charting, a series of medical protocols, known as NaProTECHNOLOGY, are available to those who use Creighton. The term “NaPro” stands for “natural procreation.” These protocols consist of tests and treatments corresponding to particular abnormalities identified by charting cycles. There are also protocols for when the charts look “normal,” but you still do not conceive (or can conceive, but can’t carry a pregnancy to term). 

NaPro was designed with the intention to treat gynecologic abnormalities, not simply suppress their symptoms. The physicians trained in this area are commonly referred to as “NaPro doctors.” The doctors trained in this area of expertise are looking for a root cause of a couple’s infertility. They will not give their patients a Band-Aid solution.  

Our experience working with a NaPro doctor

We found a Creighton Method instructor and started charting. After we had acquired enough data through my charting, we met with a NaPro doctor. The first order of business was to look at my hormones. This is done through what is known as a “targeted hormone evaluation.” These timed blood draws help look at how estrogen and progesterone are acting throughout the cycle. I was diagnosed with a hormone imbalance and put on hormone replacement therapy. When I followed-up three months later, my hormones were finally balanced. But as time went on, we found ourselves still unable to get pregnant.  

Seeking out a NaPro surgeon

One night, a close friend came over. While talking about our infertility, she told us to look into a NaPro surgeon in our state. I had heard of him, and he had a good reputation. I looked at my husband and said: “I am ready! I need to know! We need to know!” The next day, I scheduled an appointment with him.    

On the morning of the appointment, I waited in the lobby anxiously. Meeting a new doctor and being surrounded by women who were expecting was not helping. I shoved my anxiety aside and focused on our end goal: getting pregnant!  

The doctor was patient and soft-spoken. He examined my charts and saw nothing alarming. Next, he asked me the usual questions I had been asked so many times. He asked about my periods, bowel movements, pain during intercourse (something I should have paid more attention to), heavy bleeding… I answered ‘no’ to all of it. 

The surgery

Taking our age into consideration, he suggested surgery–a diagnostic laparoscopy. This medical procedure allows the surgeon to get an inside look at the pelvic organs and cavity. I was now thirty-nine. We had no time to waste. My husband and I opted for the surgery.  

The surgery was scheduled a few weeks later. It took over two hours. The cause of our infertility was widespread stage 4 endometriosis–as in, stage 4 out of 4. As far as severity, it did not get worse than this.  

Endometriosis was causing my infertility

Endometriosis is a disease where adhesions start to grow outside of the uterus. Each stage indicates the severity of how much the adhesions have spread. Left untreated, it can lead to infertility and other health issues. With stage 4, adhesions had spread to my uterus, ovaries, and fallopian tubes. I was lucky it had not reached my bowels. The surgeon removed the adhesions, unblocked one fallopian tube, and drained the endometrial fluid in the cysts from my ovaries. I was all “cleaned up.” But was I back to health? 

There I was, with a possibility of conceiving back on the table. But I kept thinking, if my endometriosis had been so severe, how come it did not show up on my charts? How come I was not experiencing the symptoms typically associated with it? Truth is, sometimes it cannot be seen on a chart and you don’t have symptoms. That was my case–at least, I thought it was.

I learned after the surgery that painful intercourse is not normal  

Before the surgery, sex was painful and uncomfortable. Being older, I was aware vaginal dryness was common. We used fertility-friendly lubricants to help alleviate the dryness. Despite that, I continued to experience pain during intercourse. I took it as something to be expected as you get older.  

After the surgery, intercourse was a new experience. I no longer had pain during intercourse. None! I remember having a strange look on my face as my husband and I were sharing an intimate moment. He asked if something was wrong. I looked at him and said: “It doesn’t hurt! It no longer hurts!”  

Until this point, I had never considered the pain I had during intercourse as an indication of a serious problem like endometriosis. When doctors asked about it, I thought they meant pain so severe that it prevented intercourse. I did not have that. Not me. I had vaginal dryness. I never even mentioned that fact to my doctor. I thought it was “normal.” 

Regrets and second thoughts

And then it came back to me–that morning chat at work several years earlier. My co-worker had spoken of pain during intercourse. Why did that not register with me when I was experiencing it? Why did I not pay attention to it? Had I been more aware of my body, I may have been more in tune with what it was telling me. Unfortunately, I did not, and I learned my lesson the hard way.  

Would things have been different if I had paid more attention to my co-worker’s story? If I had taken my fertility more seriously? If I looked into Creighton earlier? If I had taken my “vaginal dryness” more seriously? If I had met my surgeon earlier? Possibly.   

The surgery helped my symptoms but I was unable to conceive

Sadly enough, just like my co-worker, my endometriosis rendered me infertile. I was forty years old. It was now confirmed that I would never be able to conceive. I was devastated but also relieved. This part of our infertility journey had come to an end. My husband and I then made the decision to adopt. One year after my surgery, we adopted our daughter. In the following two years, we adopted our sons. I am grateful to their birth moms who have given me such precious gifts. 

What I wish every woman knew about her cycles and fertility

If you take away anything from my story, it’s that women must pay attention to their cycles. Heavy and unusual bleeding, discharges of various colors and smell, brown bleeding, pain during ovulation, bloating, pain during intercourse, length of cycles that vary from month to month–many of these things may be common, but they are not normal. And perhaps because they are so common, we (and many of our doctors) simply dismiss them. Often, we blame it on stress. Take it from me: I had some of these symptoms, and I kept thinking it was either stress or normal. I should have been gentler with and more attuned to my body. You should be too! 

Endometriosis plagues more than 5 million women in America alone. Many of these women may not know about it until it is too late–like me. I don’t want you to be one of those women. I want you to pay attention to your cycles and daily symptoms. I need you to switch doctors if you are not being heard. I need you to be your own reproductive health advocate.  

My story is my story. My co-worker’s story was her story. Still, our stories collided and ended with the same result: infertility. I don’t want your story to end the same way–and with the right care at the right time, it might not need to.  

Additional Reading:

Could cabergoline be a new treatment for endometriosis?

Thoracic endometriosis: What happens when endo occurs outside the pelvis?

8 ways endometriosis can make it more difficult to get pregnant