Three-year Anniversary

August 24 will be the third anniversary of the day I was taken from an outpatient surgery facility following my rectocele to the emergency room of a hospital. I survived the night but wasn't sure I would wake up in the morning. When I fell asleep, a blood transfusion had been started. I came to peace with knowing I might not wake up.

I haven't reread my earlier posts. The hindsight is that I had a "frozen pelvis"...shut down by endometriosis...that had gone unidentified since the late 1970s. After surviving that ordeal, I placed my hands in the surgeons of Penn State Hershey Medical Center. I was experiencing pelvic prolapse and Dr. DeLeo had treated it as three separate issues rather than look at the big picture. She had also done the surgeries in the wrong order to relieve the pressure from the pelvic floor.

The ob/gyn surgeon at Hershey Med performed a hysterectomy which he believed may have made the cystocele and rectocele unnecessary. But, of course, I hadn't seen him first. Less than a year after the rectocele, I experienced another prolapse. The Hershey Med surgeon said Dr. DeLeo had used a procedure not recommended for my type of prolapse. His procedure was abdominal surgery with 4 days in the hospital. Finally, after starting to recover from that surgery, I was able to see the bladder specialist. He referred me to outpatient physical therapy which healed my issue without further surgery.

Somehow my bladder was only holding one ounce of fluid instead of the normal 20 ounces. The "women's therapy" was exercises as well as use of a painless probe that measured strength and also stimulated the internal muscles.

I've been on disability for about a year since I was unable to return to work. Healing from almost three years of barely moving is no easy task. What has worked for me is aquatherapy. It began with a shoulder problem but since I found I could move so easily in the water, I am also conditioning/rebuilding the barely used and atrophied muscles. Strength is slowly returning. New muscles are felt as new exercises are introduced. I can stay awake for a day without a nap.

Because of my history of trauma, my mind/body stored the aftermath of the transfusion and subsequent abscess as trauma. I'm still holding 20-30 pounds of trauma weight when my weight should only be about 100-105 because of my height. I've lost inches with aquatherapy from April through now but have put on 1-2 pounds. That battle to lose the excess weight has begun but has yielded no results yet.

I see where I made the first mistake but I can't go back there. The pelvic prolapse has impacted my life in many ways. I should be grateful to be alive. I have new hopes and dreams and know they can be realized, yet I always question whether I have the energy it takes to achieve them. So baby steps and one day at a time are still the rule.

I found a website today for the Endometriosis Online Arts Project. I'm providing the link for others who might be interested. Now I'm off to do an art set expressing my feelings about endometriosis.

Not so fast...

Of course when the rectal prolapse suddenly appeared again, I panicked. These are body parts falling to the outside. Very disturbing. Because of the holiday, Brian placed an emergency call to Dr. DeLeo. That's when we learned the doctor does not do emergency call backs. I spoke to her office the next day and secured an appointment for July 6.

Dr. DeLeo confirmed the presence of a "slight" rectal prolapse. She asked me to have a "second opinion" with a colo-rectal specialist. I left her office wondering why she asked me to have a second opinion. Isn't that something the patient requests? She didn't say, "I'd like you to see a specialist because I'm not sure what is going on." Seeing a male colo-rectal person was not an option for me.

I returned home and hit the internet searching bladder and rectal prolapse. That was the first time I ran into the term "pelvic prolapse" or "pelvic floor disorder". They were articles about the big picture. The bladder, vagina, and rectum are all connected in terms of issues. When the bladder prolapses, it bulges into the vagina. The vagina can also prolapse causing pressure on the other two organs. A rectal prolapse can cause pressure on the vaginal wall. One of the main causes of pelvic prolapse is weakening of the pelvic floor muscles which can be due to age, childbirth, frequent lifting, and (while not specifically stated) I would imagine long-term sexual abuse.

I extensively researched the best way to evaluate pelvic prolapse. The NIH highly recommended a specific type of MRI. I printed out their recommendations and requested an appointment with Dr. DeLeo right away. I cancelled the appointment with the colo-rectal surgeon because I wanted the "big picture" approach. If that surgeon confirmed the rectal prolapse, he would have recommended a rectocele without taking the condition of my entire pelvic region into consideration.

My thinking at that point was Dr. DeLeo had performed the cystocele well. The explanation given for the immediate rectal prolapse was that one prolapse usually leads to another. "Nothing to worry about. I can fix that." While she was board certified, I realized she was certified in General Surgery but held herself out to be experienced with ob/gyn issues. Because she had been recommended for the colonoscopy my assumption was she knew that area of the body well. I didn't mind working with her.

In the meantime, I was concerned about additional time away from my clients. I didn't have an ob/gyn because my PCP since 2004, Dr. Bogdan, had been doing my annual Pap smear and checkups. I called her office to find out if she could get me in to see a female ob/gyn because I was in a mid-pelvic crisis and wasn't positive I was with the right doctor. Each ob/gyn I called either wasn't accepting new patients or had a wait until January. It was July. The prolapse was too uncomfortable for me to wait that long. I also assumed Dr. DeLeo was sending reports to Dr. Bogdan so she could monitor what was happening with me.

Returning to Dr. DeLeo's office with research in hand, she ordered an MRI for me. During my next meeting with her, she reviewed the MRI results with me. I had a rather large cyst on my left ovary, likely a "chocolate cyst" also called an endometrioma. She indicated she would have to remove the cyst before she performed the rectocele. Both procedures were scheduled.

Lesson: Even if your PCP performs your annual ob/gyn checkup, make sure you are on record with an ob/gyn in case of an emergency.