A Place of Pleasure and Pain

Author’s note: This piece is a patient narrative I wrote for a Narrative Medicine assignment following an interview of someone I know well, but whose health history I knew little about prior to this assignment. This patient is a medical student at a different institution, and her name has been omitted for her privacy. My purpose for sharing this piece is to destigmatize conversations providers have with their patients about painful sex. I hope to be an open door for my future patients with similar experiences to encourage them to talk about their pain and seek treatment.

 Trigger Warning: Sexual Trauma.   

Disability: A condition that limits an individual's movements, senses, or activities. 

She fits this definition, but why does she feel so much guilt using this term to describe herself?

Throughout her adolescence, she thought the symptoms she experienced were normal. 

Tampons are hard for everyone to insert for the first time. But should they be painful the second, or even the tenth? Painful periods and back pain were normal for her, because her older sister and mom had them, too. Two bowel movements a week didn’t mean she was constipated. Sharp pain radiating throughout her pelvis during a long car ride…

That felt less normal, but not alarming enough to seek treatment. 

She lived silently with these symptoms. Then her dad, a urologist, opened a center for pelvic medicine. Through interning at his office, she learned for the first time what pelvic floor dysfunction was, but still didn’t think she had it. 

It was frustrating to want to have sex, but to know it would be a painful instead of pleasurable experience. Her previous partner told her she may be a lesbian or asexual because she didn’t want to have sex and be in pain. After all, she’d had pleasurable sex with him countless times before. He couldn’t wrap his head around how even though she had been able to have pleasurable sex in the past, her pain was debilitating enough to decline sex now.  

Then he forced her to have sex with him without her consent. 

Her condition impacts her ability to sit for long periods of time, use tampons, and have intercourse with her partner. Her ex, her previous friends, her mom, and even providers she mentioned her symptoms to assumed that her pain was psychologically driven. They told her she was stressed, needed more foreplay, more lube, or a glass of wine. 

When she was in college, she went to her father’s clinic just to get some routine birth control, and the nurse practitioner could feel her levator ani muscles spasming beneath the vaginal wall during the pelvic exam. During this visit, she learned she had high tone pelvic floor dysfunction.

Things she had thought were normal were not.

She didn’t know how much pain she had been in until she started getting treated. 

She started getting trigger point injections into her spasming muscles. 

She went to pelvic floor physical therapy, and slowly began to feel relief. 

While the musculoskeletal symptoms were abating, she began to have pain that she had trouble placing. It wasn’t familiar to her and caused her to avoid being aroused all together. Even kissing her fiancé gave her pain, something that hadn’t bothered her pelvic floor muscles in the past. When she went back to her father’s clinic, her provider told her she had a keratin pearl (trapped squamous epithelial cells) adhered to her clitoris that was causing pain. She had it removed in the office and her pain went away by the next day. She was relieved, but was also upset, knowing so many people didn’t have the resources to get treatment for something like this. At this point, she was a medical student. Not once had she been taught to retract the clitoral hood on a patient, and not once had a provider done it to her.

How would someone know what to look for if they weren’t trained to look for it?

This past spring (2023), she learned of another likely diagnosis: Endometriosis. Her painful periods had ceased for a few years when her IUD made her periods go away. But the periods came back, and with them, so did the pain. As someone living with chronic pain, she got to the point where she didn’t want to be in her body anymore. Not in the sense that she didn’t want to be alive, but it was getting so hard to be in that amount of pain every day and increasingly frustrating to miss out on activities that she had enjoyed in the past.  

It is so normalized in our society for women to experience pain during sex or to have some degree of lack of pleasure. This makes it difficult to get a diagnosis and be taken seriously as a patient, as a wife, and as a friend. When women don’t want to have sex, it just reinforces the stereotype that women don’t like sex as much as men do. 

Even now, in a supportive marriage, she still finds herself feeling guilt when she doesn’t want to have sex. It comes from her trauma, from society’s pressure to “keep men happy,” and from the belief that sex is an important part of a healthy relationship. She makes a poignant decision not to have sex when she is in pain. It is challenging for her husband, although he supports her, not to get his ego bruised. During pain flares, she must find other ways to reassure him that she still finds him attractive. 

Something that has helped her live with her condition is activism. She joined an organization called “Tight Lipped” that works to add more education about pelvic floor dysfunction and pelvic pain disorders and their treatment into residency programs. She wants to be an OBGYN, but is also currently getting a PhD in developmental biology, and interested in using her MD/PhD degrees to further the field of reproductive endocrinology and infertility. Through her work now, she has been able to take the burden off herself to become a pelvic pain care provider. She uses her knowledge and experience as a patient to educate and inspire other providers to go into this field. She knows the need for vulvovaginal pain care is high and hopes that one day others will also recognize that such a disability needs to be talked about and treated.