To chronic pain patients, the following situation is all too familiar: They start having pain, which worsens until everyday activities become unbearable. They go to their doctor, expecting treatment or at least a diagnosis. But the doctor scratches her head. She is looking for an obvious cause. Say, a knife sticking out of a patient’s chest. But there is no obvious cause. So the patient starts a scavenger hunt of specialist visits, general therapy, and alternative treatments. Maybe there is some degree of relief. Maybe not. There sure isn’t a diagnosis, or any specific problem identified.
Hillary B.’s experience was even more aggravating. In July of 2018, while at work, she opened her legs slightly and heard a pop. From that point on, she felt excruciating pain on the inner left side of her sit bone that was so intense that it forced her to leave her job. Sitting was painful, especially on hard chairs.
Hillary, who is now 31, has a history of mysterious pains that started in her early twenties. At 22, she developed chronic eye pain following lasik surgery, and at 26 she started getting wrist pain. At 30, when she started experiencing full body pain, she was diagnosed with fibromyalgia.
Although she was a veteran of chronic mystery pains, this recent episode was harder to cope with. Because of her other health concerns, standing for long periods was impossible. If sitting was intolerable she would be left with very few comfortable poses.
Because of its location, her sitting pain felt more intimate than most aches. Her self-esteem took a hit; this new pain went the core of her feelings of self-worth as a woman, and had a profound impact on her sex life.
For the next six months, Hillary searched for answers. She saw two orthopedic surgeons, received a steroid injection in her hip, tried traditional physical therapy, and even attempted aqua physical therapy. None of it helped.
During this time, her pain blossomed into a plethora of symptoms. Sometimes, her piriformis muscle would be tight or painful. Sometimes her symptoms mimicked sciatica, and the pain radiated down her leg. She had pain when performing certain exercises, and of course, sex hurt.
The doctors she visited seemed curiously unaware of the anatomical landscape in the affected area. Her physical therapist wouldn’t touch it. “It seemed like every doctor I had seen had this blank area in their mental anatomy chart that encompassed everything inside the pelvic bowl. No one considered it as an option,” Hillary said.
Fortunately, Hillary was a former certified sex coach, and she knew what lay inside the blank area of the map: the pelvic floor muscles.
Even for someone with a solid understanding of pelvic floor anatomy and the various ways in which the muscles can misfunction, Hillary’s case was not an easy one to figure out. Part of the issue was that the term “pelvic floor dysfunction” covers a broad swath of conditions and symptoms, including urinary and fecal incontinence, pain during sex, and anal or vaginal prolapse.* Pain when sitting is less obviously tied to the pelvic floor muscles than sexual or excretory issues.
*Although pelvic floor dysfunction is often discussed in the context of women’s health – probably because vaginal childbirth increases the risks of certain conditions – it affects both sexes. In men, it may lead to pain in the scrotum or penis, erectile dysfunction, or difficulty reaching orgasm.
Once she had narrowed in on the culprit, she referred herself to a physical therapist who specialized in pelvic floor therapy. After performing a manual examination, the physical therapist knew Hillary was on to something. “A professional who knows what a vagina is supposed to feel like can tell pretty immediately if something is wrong just by inserting a finger into the vagina and probing,” Hillary said.
Hillary has what is known as a hypertonic pelvic floor, meaning that the muscles are constantly in a contracted (shortened) state. Therapy is focused on re-training the muscles so their default state is relaxed. To this end, Hillary goes to the gym and pays special attention to her glutes (developing the butt muscles can take some of the pressure of supporting the body off the pelvic muscles) and uses dry needling (a technique in which the practitioner pokes the tight muscle repeatedly with a needle to cause it to twitch, thereby relieving the spasm). She also enlists her two romantic partners to assist with the manual and trigger-point release physical therapy at home.
Lifestyle changes also help her to control the pain. She goes to the gym, and does tai chi. She practices sitting with good posture and deep belly breathing, and makes managing stress a priority.
While there is quite a bit of data showing that pelvic floor exercises are safe and very effective at treating certain conditions, Hillary’s fibromyalgia complicates attempts to manage her pain. One of the defining characteristics of fibromyalgia is poor sleep. In particular, Hillary is unable to spend enough time in the deep sleep stages that are crucial for tissue repair. Injuries and pain result from the slightest provocation. It’s as if her body is looking for an excuse to malfunction. The fibromyalgia diagnosis makes the treatment of any other condition frustratingly difficult.
Even when the physical pain is under control, Hillary’s health issues have devastated other areas of her life. She is often unable to work, and she has gone through periods of depression and despair. She says, “Sometimes when I’m in pain and can’t have sex I feel like my vagina is broken, that I’m less of a woman or partner, etc. I have to ration out how often I can have sex or orgasms before there will be inevitable consequences.”
She admits that the current quarantine measures have not made things any easier. She is no longer able to go to the gym, and the stress aggravates her condition.
Hillary is currently able to work from home on a limited basis, and is focused on earning enough to qualify for social security disability insurance. There is no cure for fibromyalgia, so she is focusing on managing her symptoms.
She notes, “Maybe one day researchers will better understand fibromyalgia and a new treatment will come out, but until then I have to accept my body as it is, and try to focus on things that bring me pleasure so I don’t get lost in all the pain.”
