Two years ago, I decided to go on hiatus until my life was more stable. I needed secure housing and I needed my health conditions to improve. I managed to get the housing situated, but I’m realizing my health is never going to improve. I have too many health conditions that play off one another, with hypermobile Ehlers-Danlos acting like a bully to all of them. So, I’ve started trying to get my life back, or what parts I can get back, regardless of my body’s status.

My body’s status isn’t bleak, but it’s seriously frustrating. I’ve got more surgeries on the horizon. Some will be happening sooner than others. The surgeries are:

  • Sacroiliac joint fusion.
    • My sacroiliac joint has been dislocated at least since April 2018. It’s been reset by medical professionals multiple times but won’t stay in alignment.
    • It’s thought that if I get the sacroiliac joint fusion it will stabilize my hip. If it does, then the hip injuries won’t keep happening, which means the next surgery (hip arthroscopy) will hopefully be my last hip surgery.
    • This surgery has a high success rate.
    • I’ll be having this surgery first.
  • Hip arthroscopy
    • This will be my third hip arthroscopy.
        • The first (September 2011) was an arthroscopic labral repair, cam and pincer osteoplasty for femoroacetabular impingement, trochanteric bursectomy, and the repair of torn ligaments. This surgery failed.
        • The second (March of 2013) was an arthroscopic labral reconstruction (a labrum transplant). It has also failed.
    • Once again, I have a femoroacetabular impingement and likely another labral tear.
    • These hip injuries keep happening due to my primary diagnosis of hEDS, but directly from a consistently unstable sacroiliac joint. (which is a symptom of hEDS). Therefore, I’ll be having this surgery after the sacroiliac joint fusion.
  • Pelvic joint fusion.
    • My pubic symphysis (pubic bone) is dislocated, which contributes to the pelvic pain I experience.
    • This surgery has a varying success rate with a high probability of complications.
    • I’ll be having the sacroiliac and hip joint surgeries to find out if they relieve enough pain. Only then will I consider getting this surgery.
  • Vaginal vault prolapse (vaginal apical prolapse) surgical correction.
    • I had an iliococcygeus fascia suspension with my hysterectomy in February 2018, but it’s failing.
    • It’s currently unclear which method will be tried next, though my surgeon says that instead of using mesh she will use allograft (ligaments from a cadaver).
    • I’m trying to hold off on having this surgery for as long as possible.

The good/hopeful news is that some of my medical providers think that if the sacroiliac and hip surgeries are successful unto themselves, those surgeries might also lessen or even eliminate the pudendal neuralgia.

The next couple of years don’t look like they’re going to be medically much easier than the last decade has been, but hey — at least now I have housing!