2002: Pelvic pain origins

The pelvic pain all stems from an injury to my left hip in November of 2002. It caused me to have a literal pain in my ass: while it started pain deep in my hip, it also caused pain in my sacrum (particularly the sacroiliac joint, which dislocates and subluxes frequently) and pain across my iliac crest, along my ischium, throughout my pubis, down my pubic symphisis and into my coccyx, and throughout my acetabulum. 

I didn’t have the vocabulary to explain that back then, so all I could say was that my ass hurt. As a young, somewhat femme-appearing person who had experienced sexual trauma, doctors referred me to see a psychiatrist — for nine years.

2011: Diagnosis and treatment of original injury

It took me nine years to get that injury diagnosed and treated. By that time, I was in what is termed “acute chronic pain” at all times. I had become an alcoholic to cope with the pain. But in 2011, I finally found a doctor who would listen to me, and In September of 2011 I underwent repair of an acetabular labral tear; a cam and pincer osteoplasty for femoroacetabular impingement; a torn ligament repair; and a trochanteric bursectomy of my left hip.

The relief only lasted a few months. 

2013: Continued treatment

In March of 2013, I underwent a replacement of the labrum in my left hip. That brought no relief from the pain and since then, the pain in my pelvis has worsened. To be clear, the worst of the pain in my hip — the pain deep in my hip which came from the labral tear — has mostly alleviated.

The pain in the entire surrounding area has continued to evolve, and now it’s at its worst in my pelvis.

2018: Hysterectomy

I’m having pelvic organ prolapse as a consequence of my Ehlers-Danlos body having had a hysterectomy in February 2018. I needed to have a hysterectomy because of the ongoing pelvic pain and intermittent non-menstrual bleeding.

During surgery, my doctor discovered that my uterus was turned a full 90° on its side, that my ligaments are as small as strings and as loose as rubber bands, and that I have almost no fascia.

Removing my uterus, cervix, and Fallopian tubes eliminated the intermittent non-menstrual bleeding but the pelvic pain I was experiencing became a different type of pain. In a lot of ways, it’s now worse.

2019: Diagnoses related to pelvic pain

We don’t know exactly what my body was doing prior to the hysterectomy because it wasn’t until a year after the hysterectomy that I was finally able to see a vulvovaginal specialist. By the time I had that appointment I had experienced chronic vulvar/perineal pain, burning, and itching for quite some time. We do know that I had pudendal neuralgia before the hysterectomy, but the vulvovaginal specialist also diagnosed me with clitorodynia, clitorial adhesion, dyspareunia, dysuria, urethral and bladder tenderness, vestibular erythematous with tenderness at 4/6/8 o’clock, and hypertonic pelvic floor dysfunction with “significantly tight and tender” levator ani muscles (which are the iliococcygeus, pubococcygeus and puborectalis muscles). At the time, the pudendal nerve was found to be tender over only the left ischial spine.

Since my appointment with the vulvovaginal specialist ten months ago, I’ve developed the three pelvic organ prolapses, pudendal neuralgia along the right ischial spine, secondary provoked vestibulodynia, generalized vulvodynia, urethral syndrome, worsening coccydynia, and most likely, interstitial cystitis.

I have contributing factors other than the Ehlers-Danlos (or perhaps, due to the Ehlers-Danlos, depending on your point of view). Orthopedically, I also have cervical radiculopathy, cervical spondylosis, cervicothoracic scoliosis, multilevel degenerative cervical disc bulging (C3-7) and disc protrusions with ventral cord impingement, kyphotic curvature of the cervical spine, lumbar radiculopathy and stenosis, a hemangioma S2 vertebral body, and a prominent, slightly asymmetric venous structure in my left Alcock canal.

Additionally, I have the complicating factors of a recurrent hiatal hernia, irritable bowel syndrome with chronic idiopathic constipation, fibromyalgia, left-sided sciatica, sacroiliitis, and secondary mast cell activation syndrome. Interstitial cystis is now suspected, too. Note: these are just the diagnoses relevant to my pelvic pain and do not include the many other diagnoses that aren’t related.

From The Personal to The Political: A Thought Process Regarding Worsening Disability And Activism

  1. A Medical Appointment (CN: Mentions of anatomy, medical conditions of sexual and pelvic organs, and medical procedures. No descriptions or details.)
  2. TMI: Sex (CN: Sex, anatomy, gender, psychology. Mentions of sexual trauma without descriptions or details.)
  3. Causation (CN: Mentions of anatomy, medical conditions of sexual organs, medical procedures, and medical trauma/neglect. No descriptions or details.)
    1. 2002: Pelvic pain origins
    2. 2011: Diagnosis and treatment of original injury
    3. 2013: Continued treatment
    4. 2018: Hysterectomy
    5. 2019: Diagnoses related to pelvic pain
  4. Feelings
  5. Developmental Years & Privilege
  6. Trying
    1. The Disability and Sexuality Access Network
    2. We Need Some Fucking Help, Desperately
  7. Asking for Help is Really Damn Complicated
    1. Labor and money are both forms of capital and we’re short on both
    2. Disposability politics
    3. Oppression olympics and privilege
    4. “Capability”
    5. Access as a privilege
    6. Capability as ability and incapability as disability
    7. The movement can make us capable; it can also render us incapable
  8. We Are Nowhere Without The Movement to Support Us