I am 47 years old living with complex, chronic pain that has become debilitating. I have been treated by several specialists including two neurosurgeons, a pelvic specialist, a pain specialist, and physical therapists. Each has treated individual symptoms or a part of the problem but no one is addressing the problem holistically or treating the real issue. At this point, I am desperate to find a specialist who can help to accurately diagnose and treat me. I know that this is an unconventional method of finding a physician but, so far, traditional methods have not been successful.
My pain began 16 years ago after the birth of my second daughter that was followed within a couple months by a hysterectomy. A long history of endometriosis, along with several unsuccessful hormone therapies (OCP's, Danazol, Depo Provera, Lupron injections, etc.) and five laser laparoscopies made a full hysterectomy a necessity. For many years, the back pain was manageable with prescription medication. In the last four to five years, the pain has become much more intense.
My consistent and primary complaint is chronic pain in the extreme low back/buttocks area. A couple of years ago, the pain spread to the hips. Now, the pain is radiating down the outside of the thighs to the knees and in the feet.
The very worst of my pain is at the top of the tailbone, sacro-coccygeal joint, sacrum, hips, groin/pubic bones, sacroiliac, and lower lumbar facet joints. I also have referred muscle pain in the periformis, pelvic floor, buttocks, lower back, back of the upper thighs, feet, and the upper back on the right-side between the spine and shoulder blade. The pain is primarily tender, aching, gnawing, sharp, and burning. It is sometimes throbbing, shooting, stabbing, and cramping with a deep ache around the top of the coccyx and sensitivity to finger pressure on or near the coccyx.
Additionally, I've had increased sharp pelvic pain, including pain during intercourse, with the onset of urinary urgency and frequency, difficulty starting urination, poor urinary flow, and the need to get up during the night to urinate. Constipation is the norm and bowel movements are difficult and painful. Even with supplements (water, fiber, laxatives, Activia), I often have to resort to using an enema. When I do have a bowl movement, it requires that I apply pressure to the outside of the buttock and the vagina. In the past year, I have also had an increase of random infections (sinus, throat, intestinal, respiratory).
The most recent addition to the mix of symptoms is the development of several lumps along the upper femur, between the hip and knee on both legs. The lumps are painful to the touch and, strangely, I become instantly nauseous when I touch them. (Adiposis dolorosa or Dercum's Disease?)
Since 2006, I've had several MRIs and x-rays with the varying diagnoses: lumbar radiculophathy, degenerative disc disease L4-L5, L5-S1 with transitional S1 vertebra with incomplete S1-S2 disc; central canal stenosis from disc protrusion at the L4-5 plus impingement of the proximal right L5 nerve root, right-sided lateral recess stenosis from disc protrusion at the L5-S1, and hemangiomas in the left side of the sacrum. The most recent diagnoses include a severely displaced coccyx and disc protrusion at the L3-4, ovarian remnant syndrome and pelvic floor dysfunction.
I've received countless injections at various locations of the spine, facet joints and hip joints, nerve root block, radio-frequency ablation, and physical therapy, resulting in no change or minimal, short-lived relief. I've also used many other therapies including physical therapy (manipulation and core strength exercises), TENS unit, massage, ice/heat, NSAIDs, OTC and prescription medication, etc. None of these have been successful at alleviating pain for more that a few hours (at best). I have also tried a spinal cord stimulator (SCS) trial, which did not reduce the pain.
My surgeries include a discectomy at L4-L5 (December, 2008), which re-herniated within 3 weeks of surgery followed by a lumbar interbody fusion at L4-L5 and L5-S1 (June, 2009). In addition, I had robotic assisted pelvic surgery (July, 2010), resulting in the removal of a large cyst, endometriosis and scar tissue from bowels and pelvis, two ovarian remnants, pieces of fallopian tubes, and a piece of colon.
Despite therapy, medication, injections and surgeries, I continue to be in extreme pain that has taken over my life. I have had to quit a job that I love because of the constant pain, exhaustion, and inability to concentrate. It has gotten to the point now that cannot even do household chores. I am primarily housebound and spend many hours in bed. While I'm hopeful that the SCS will alleviate some of the pain, it will certainly not fix the problem. I fear that allowing this issue to continue without proper treatment may cause serious, irreversible harm.
I feel that my doctors have, unfortunately, been focusing on the individual symptoms rather than addressing the broader spectrum of symptoms and real cause of the problem. In my search for answers, I was surprised to find many websites that explain a connection between endometriosis and coccyx pain. Based on the close proximity of the pelvis and tailbone, it makes sense that one may have an impact on the other. My symptoms also seem to be consistent with coccydynia, sacroiliitis, and/or ankylosing spondylitis. I have tried to find a doctor in the Phoenix metropolitan area who works with these types of cases but have had no luck.