TRIGGER WARNING: the following article discusses sexual assault.
My CPTSD is based on traumas that started in early childhood. I have no conscious memory of “normal.” My traumas are old, familiar enemies. I know them well. They’ve become characters in my mind to better organize and study them. Mrs. Rochester (named after the lady who was kept in the attic (in Charlotte Brontë’s Jane Eyre) is my daily, nagging inner critic who tells me I do everything wrong. A high-handed narcissist is based on someone in my life who degraded me with insults as though talking about the weather. A brewing medical problem came to the forefront in 2021, and I’m now navigating a whole new layer of trauma. I’ve been plagued with medical problems forever, but this was a whole new level.
I’ve always had pelvic problems, but they were dismissed as insignificant, despite the pain I reported. Turns out the situation was much worse, and there is a very strong connection between child sexual abuse and gynecological problems, such as 79% of survivors who endured severe physical and sexual abuse experiencing endometriosis. The study suggests that it’s dose-related, meaning the severity of the events can be correlated to the intensity of chronic pain someone experiences.(1) Pelvic floor disorders can include fibroid tumors and other chronic problems.(2) Another study found that women who experienced pelvic pain were more likely to use dissociation as a coping mechanism.(3) Dissociation is a common feature of CPTSD.
The worst phase of chronic pelvic pain began more than a year ago, around the time I was diagnosed with CPTSD. An initial visit to my primary care doc led to some concern, and what followed was a saga of delayed appointments due COVID causing low staffing levels are hospitals, a near-fatal adverse event to a common pain med, and because of my unfortunate history of adverse reactions, I was sent home with no pain meds after surgery.
The first ob-gyn marched into the exam room and was strangely aggressive as she barely took the time to glance over her shoulder as she went down her list of questions. When I said I was recently diagnosed with CPTSD, she demanded to know why. She wanted me to explain what had happened. She wanted details. These were things I couldn’t discuss without having a complete meltdown. After an ultrasound and a biopsy, she decreed there would be no surgery. The tumors were small, and I “couldn’t possibly feel pain.” I paid more attention to reviews about physicians before I went for a second opinion. I had the good fortune of finding a compassionate and trauma-informed ob-gyn who recommended a hysterectomy. Pain management was essential, she said because the muscles and facia were contorted and spasming with the stress. She prescribed a common pain med.
It helped at first, but it felt heavy, so I only took it when things were really bad. Then one night I got up from bed and couldn’t walk right. Like staggering drunk, only worse. I collapsed on the floor and my arms and legs twitched as my body went numb. It felt as though the back of my head was being squeezed. My husband and I were convinced it was a heart attack or stroke, and off to the ER we rushed. The attending physician dismissed it as a panic attack and told me to go home and ride it out. Had I followed his advice, I would’ve been riding it out in a hearse not too long after. I wasn’t getting better, and we made two more trips to the ER that week. Ever the ambitious, high-functioning perfectionist, I still showed up for work the following morning after spending all night stretched out on a gurney having one test after another. (I work from home, thankfully, so it’s a short commute.) It was my mom, a retired EEG tech, who made the connection between the pain med and the symptoms I was experiencing. I stopped taking it and she hauled my tail up to her home in rural Maine to feed me (I lost a lot of weight way too fast) and keep me isolated from any chance of catching COVID. I spent a lot of time sitting outside watching foxes, seals, eagles, and other wildlife as they went about their routines.
The scariest part of the adverse reaction, other than nearly kicking the bucket, was the psychological effects of that pain medication when it becomes toxic to the system. My usual nightmares were infused with hallucinations. I couldn’t shake the terror, even when awake. According to the prescription information, it was a short slide to delusions and psychosis as the central nervous system shuts down. The metaphor became a vivid night terror. I was trapped in a vehicle on Pluto’s surface, and thick ice was encasing it, obscuring my view and leaving me sealed into a dark, metal tomb. The sun was a distant dot of light. A would-be rescuer slammed a shovel into the ice but wasn’t able to get to me. When I awoke, my body was ice-cold and a song that played at my brother’s funeral was stuck in my head. I knew I was dying. Those night terrors are representative of fresh new triggers that I have yet to recognize until I’ve already fallen into the trap. They’re full-body flashbacks that set me back for days. A tension headache after a long day at work, a nerve twinge because of my constant muscle armoring, taking a vitamin, and worrying if it’s going to do something horrible, all these things now raise alarm bells that dig deep physically. And after a particularly intense somatic therapy session, a new realization dawned that forced me to confront, and release, a part of my past that I was terrified to face.
Sexual assault was the scourge of my early childhood. It happened repeatedly before it was discovered and stopped. My sexuality remains largely unexplored. I’ve made peace with that, but it brings to mind two specific traumas that led me here. After being raped around the age of five, I remember saying something about having a baby. My attackers laughed. One told me that because I was so small, that a fetus would die and stay in my body. I believed it for years. Then a former stepfather (there are a few) routinely berated me for my lack of sexuality, cruelly mocking me for not being as adventurous as he was. He and his girlfriend made fun of me all the time, saying that they’d gladly accept me if I were a lesbian, but couldn’t deal with me “being nothing.” I had told him about what had happened to me many years ago, but I was met with hostile disbelief. And this year, at the age of 52, I “delivered” tumors via a hysterectomy that weighed as much as a baby. Like a scene out of a horror film, the tumor-baby pressed against ligaments covered in endometriosis. That eternal five-year-old inner child covered in welts and bruises, confused and ashamed, cried out in terror at the realization the attackers’ old curse had manifested. The tumors were big enough to create a baby bump. I looked like I was starting to show. Their assaults—physical and emotional—led to real-world medical problems that caused intense pain for years. Medical gaslighting and trauma added to the burden. It’s not all in your head. You can’t simply “get over it,” no matter how frustrated or angry your gaslighters become about “your behavior.”
I was diagnosed with CPTSD a year ago. Cognitive behavior therapy helped for a while, but ultimately I’ve made the most progress with somatic experiencing. It can be scary at times when old traumas bubble up to the surface, but then they begin to dissipate. I feel lighter and have fewer intrusive thoughts. Physically, I have a more comfortable range of motion. It’s also helping me recover from the “pain posture” that so many people with chronic pain are familiar with. Shadow work helped me recognize how my inner child slammed the brakes on areas of my life that she wanted no part of, and because she was relentlessly screaming into the void, I wasn’t going to heal until I faced her and listened. Truly listened, acknowledged, and comforted her. Once I’m a bit more comfortable with somatic experiencing, I’m hoping to give rolfing a try. It’s a type of bodywork/massage that can help with releasing old stress.
There are plenty of days when I feel down and fatigued, but I’m finally getting a sense of what life without chronic pain is going to be like. I’m an eternal student and intend to keep delving into the research and all the ways to heal my body, mind, and spirit.
My question to the CPTSD community is this: When (or even do you) disclose that you have CPTSD in medical settings? If so, what has the reaction been like? What would you recommend to others based on your experience?
- Early life abuse and risk of endometriosis. Harris, Holly R., Wieser, Freiderich, Vitonis, Allison F., et al. Human Reproduction, Vol. 33, No. 9, pp. 1657–1668. 2018.
- Sexual abuse history and pelvic floor disorders in women. Cichowski, Sara B., Dunivan, Gena C., et al. South Med Journal. 2013 Dec.: 106(12): 675–678. Doi: 10.1097/SMJ.0000000000000029.
- Dissociation in women with chronic pelvic pain. Walker, E.A., Katon W.J., et al. American Journal of Psychiatry. 1992, April: 149(4):534–7. Doi: 10.1176/ajp.149.4.534.
Lee Frost has worked for nonprofits and marketing agencies focusing on healthcare for the past ten years. She’s a patient advocate and recently launched a blog about menopause and CPTSD called the Sinsemillier. She grew up in the Boston area and has a BA from UMass Boston and a master’s from Harvard Extension School. Lee lives north of Boston with her husband, where they both love to nerd out on sci-fi and fantasy.