Decked out in my white strapless dress trimmed with a subtle sweetheart neckline (and just a touch of sparkle), my father walked me down the aisle and placed my hand in my husband’s. We walked up onto the altar and exchanged vows with a reverent excitement, eager to begin our lives together. As the night continued, we sealed our commitment with a first kiss, a first dance, and another first we had been looking forward to for a while. I had never had sex until my wedding night and was hoping for a sweet sexual embrace. Instead, I was met with feelings of intense physical pain, almost as if my new husband was hitting a brick wall inside of me. Something wasn’t right, but it would take me nine years to figure out what that something was. I eventually learned that for women like me who have endometriosis, painful sex (medically known as dyspareunia) is not all that uncommon [1].
A common misconception
The pain got somewhat better over the years, but only seldom went away completely, meaning that I was rarely able to fully enter into and enjoy sex with my husband. Certain angles brought sudden, sharp pains, and other times it was just overall uncomfortable or painful enough to become something I didn’t exactly look forward to. I enjoyed being intimate with my husband, but eventually my libido started to tank and, strangely, I didn’t know why.
As I look back on this time, one of the most frustrating parts about this experience is that I thought it was normal. People don’t really talk about this openly, so how should I have known better? Having nothing to compare it to and having never been fully educated on what to expect, I pushed through many years of painful sex when I should’ve stopped right away and sought help. This reinforced my brain’s association of sex with pain. No wonder my desire for it had dwindled.
Fortunately, help would eventually find me. Not long after our ninth wedding anniversary, I finally discovered the incredible, but vastly undervalued specialty of pelvic floor physical therapy. I had endured painful cramps and heavy bleeding throughout my teen and young adult years and was eventually diagnosed with endometriosis around age 25. It had been brought to my attention at various points that physical therapy could help in some way, but I had no idea what that meant and was, admittedly, intimidated by the “internal work” I heard it could entail. I had already had several surgeries and was going through so much between cramps and infertility. There was just enough unknown for me to put pelvic floor therapy off–until one glorious day when I met two local (to me) pelvic floor physical therapists, Drs. Emily and Jenny, and had an eye-opening chat.
The truth: “Sex should never be painful”
As they discussed various common pelvic floor dysfunctions, “Sex should never be painful” fell plainly from Dr. Emily’s mouth. Dr. Jenny nodded emphatically in agreement. I was kind of shocked. The words lingered in my brain for days, puzzling me. Surely I understood that sex should be pleasurable, and sometimes it was for me, but I could not grasp the idea that sex should never be painful. The pain was something that I had become far too accustomed to.
Several days later, I knew it was time to make a move. Convicted to finally get the help I deserved, I mustered up some courage and scheduled an evaluation with Dr. Jenny, who has her Doctorate in Physical Therapy, additional training focused on the pelvic floor, and specializes in sexual dysfunction.
Getting help
My first pelvic floor physical therapy appointment, or: “do I have to have an internal exam?”
I walked into my first appointment pretty nervous, but Dr. Jenny clearly had a lot of experience. She put my nerves at ease with her kindness, patience, and sensitivity towards this very delicate and private area of my life. She listened attentively to my history and my apprehensions about being here. She seemed to understand the new mental and emotional burden I was trying to sort through while taking this next step. After hearing from me, she educated me on how the pelvic floor works using a colorful 3D model, carefully explained every step of this evaluation and treatment process, and, most importantly, gave me the option to be evaluated internally or externally.
This took a lot of the pressure off. Knowing that I had some control here helped me to feel more comfortable. But I was ready to find some answers, so I had mentally prepared myself for an internal evaluation ahead of time so that she could gather as much information as possible right away. By the time I undressed my lower half and got situated on the table covered in one of those classic white sheets, I was okay. Dr. Jenny explained everything she was about to do and always asked my permission before moving forward. “Finally,” I thought, with a cautious sense of relief slowly trickling through my bones, “I will get some answers.”
She gently assessed different tissues and asked me different questions, frequently checking in with me about my pain and mental comfort levels. I remained okay. She finished her evaluation and stepped out so I could get changed. Then I sat down, took a deep breath, and waited to hear about what was wrong.
Receiving a vaginismus diagnosis
Dr. Jenny explained that I had vaginismus, a condition describing painful involuntary spasms of the pelvic muscles. My pelvic floor had become pretty tight over the years, but I was completely unaware of it. When relaxed, as the pelvic floor should be during intercourse or while placing a tampon, the opening of the vagina should widen and be flexible–scored as a zero. When fully contracted, as during a kegel, the pelvic floor should tighten up and narrow the opening–scored as a ten. There should be well-coordinated muscle action between both extremes. When I perceived myself to be fully relaxed, Dr. Jenny said I was at a seven, which is not far from a fully contracted kegel. And there was nothing coordinated about the movement of my muscles.
The connection between endometriosis and painful sex
Whoa. Can you imagine trying to have intercourse while doing a kegel? As I tried to process this information, I asked her how in the world my pelvic floor could have become like this. Her explanation surprised me:
“Endometriosis is a common source of pelvic and abdominal pain, and often there is a long delay in diagnosis and treatment. From the beginning, the body’s natural response to the cramps is to contract and protect the affected area. Over time, this increased muscle tension can create other sources of pain such as muscle spasms, joint stiffness, abnormal posture and compensations, and poor body mechanics.
“Surgery is considered the gold standard treatment for endometriosis, and a natural byproduct of surgery is scar tissue. We need scar tissue for healing, however if left untreated, it can create adhesions and prevent normal tissue mobility, which can then also cause pain. So, now you have compounding layers of pain from multiple tissue sources, all the while the brain has forgotten how to sense and control the pelvic floor and core muscles, making full recovery to a non-painful state very difficult without therapeutic treatment.”
Even with excellent endometriosis care, sex can be painful and vaginismus can occur
I was amazed. My endometriosis had been managed well by expert excision NaPro surgeons using meticulous anti-adhesion techniques, so it never occurred to me that endometriosis could be the cause of my pain with sex. It made sense that it was an indirect cause–not from the lesions themselves, but from so many years of bad cramps, huddled over, unconsciously informing my pelvic floor to tense up.
Over the years, this had trained my pelvic floor to maintain a certain level of tenseness, and explained why even after my hysterectomy to remove adenomyosis one year prior, the pain with sex was still there. It explained why tampons were never comfortable for me to use, and why pelvic exams were always a painful ordeal. Thankfully, 22 years after my teenage period cramps had first started, I would finally learn how to care for my pelvic floor, a silent victim of my battle with endometriosis.
But healing wouldn’t happen overnight; my pelvic floor had been so tight for so long that it would take some time and effort to learn how to function normally. In part 2, I’ll talk about the specific steps of treatment that helped me heal, and allowed me to finally enjoy sex.
References:
[1] Shum LK, Bedaiwy MA, Allaire C, Williams C, Noga H, Albert A, Lisonkova S, Yong PJ. Deep Dyspareunia and Sexual Quality of Life in Women With Endometriosis. Sex Med. 2018 Sep;6(3):224-233. doi: 10.1016/j.esxm.2018.04.006. Epub 2018 May 22. PMID: 29801714; PMCID: PMC6085224.
