by Elizabeth Treston
What I first entered the exclusive club of spinal cord injury my girlfriends and I used to call the gynecologist the "fun doctor". The rationale behind it was that if you were seeing a gynecologist you were having sex. Well after I was first hurt, my first assumption (which is very wrong) was that I would not be having sex; therefore, the gynecologist was not on my list of doctors to see. I was more interested in finding out where I could get a new pair of glasses.
I compartmentalize my life into sections. First, I focused on school, then on my career, then on the materialistic parts of life. Furthest from my mind was a relationship. That was until I decided to focus on finding someone to share my life. Through an interesting journey, which I would be happy to share at a later date, I became involved with a handsome man who had pearly white teeth and the strong calloused hands of a carpenter. It was time to make it the appointment with the "fun doctor" for some birth control.
I called my local general practitioner (I am his only patient with a spinal cord injury) and asked if he could recommend a gynecologist. He hesitated for the briefest of seconds and then said, "Elizabeth, I don't think you can get on the table. How are you going to keep your legs in the stirrups?" I did not have a witty comeback so I hung up the phone more that a tad disappointed.
Now what? I want to have sex!
A woman with a disability attempting to find an accessible gynecologist is like a character from Monty Python searching for the Holy Grail. I started to call the local gynecologists in my area in Nassau County. I would ask the perky receptionist if the doctor's office was wheelchair accessible. She would say, "Of course we are". My heart skipped an optimistic beat.
"So she has accessible table that goes up and down?"
"No, we have no steps coming into the office."
Although my heart did not stop skipping, optimism was no longer the motivating factor. Surely, there were other women in wheelchairs that were having sex. What were they doing?
I was at a loss. I was beginning to think that it was a conspiracy. Someone in the Vatican wanted me to become the oldest virgin. My girlfriends and coworkers, although supportive, do not have a disability and their gynecologists remained in the High Tower of inaccessibility as well.
I Googled “women and spinal cord injury” on the web and found there were limited resources. One site was the New York State Department of Health’s website that states the following:
According to the New York State Department of Health’s web site, this is what they have to say on the issue: Finding a healthcare provider with whom you feel comfortable is critical. The National Center for Research on Women with Disabilities reports that women with physical disabilities find it difficult to obtain information about birth control methods that are safe and effective options for them. Also, although they may intend to have regular pelvic exams, they are often discouraged by inaccessibility and other barriers in physicians' offices. Women with disabilities report that many physicians do not conduct pelvic exams if providing assistance with transfers onto an exam table is seen as being too difficult, is not allowed under a facility's policies, or if spasticity, contractures or pain creates problems with positioning.
While many women with disabilities have no unusual problems with pregnancy, physicians need to be alerted to possible pregnancy complications associated with spinal cord injury (SCI), such as autonomic dysreflexia in women with lesions at or above the T6 level; respiratory compromise; skin breakdown; increased risk of urinary tract infections; increased spasticity; and medications commonly used in SCI that could be toxic to the fetus. Clinical guidelines for women with SCI are often based on case reports or small case studies that tend to report only the most unusual and serious problems. Unfounded assumptions of poor outcomes can cause clinicians to behave as though risks are greater than they actually are, and to practice defensive medicine.
If you are thinking about having a baby, take a proactive role with your health care provider and discuss these issues and concerns.
I looked at bulletin boards and although not a scientific poll, I found out that some women do not go to the gynecologist after their spinal cord injury due to a number of factors. The primary reason was inaccessibility. There are concerns about transfers, incontinence and simply getting dressed. Some women also stated that that they just do not wish to see another doctor.
In my hunt, I found the Initiative for Women with Disabilities in Manhattan. They have an accessible gynecological table (one that goes up and down for transfers) and a doctor familiar with many disabilities. I had found the Holy Grail!
My first experience with the gynecologist was not as unpleasant as you would think. The world did not fall apart. I did not have a bowel accident or pee on myself. I had a slight case of autonomic dysreflexia. I have no specific sensation so I could not feel the cold steel that most women complain about as she checked my vagina and functioning parts. I had my first Pap smear. As my legs were spread out in an undignified fashion, the doctor continued to give me a pelvic exam. My first step toward being defrocked!
After the exam, we spoke about birth control options. If you have a high SCI, you should be aware that there is a significant increase in getting a blood clot or DVT if you take birth control pills. We spoke about women’s health issues and reproductive rights.
I had put off my first visit to the gynecologist because I was uninformed. I am a well-educated woman and I hate to admit that when it came to my own body I knew nothing. During rehabilitation, sex was never discussed, at least with me. I assume the doctors thought I was too young; I was not married or a host of other reasons. I know now it is not their responsibility. Women's health issues are far different from that of men. I urge all women with spinal cord injuries to go to their gynecologists for their yearly exams. As women, we need to take control of our health issues.
Initiative for Women with Disabilities
Contacts: Judith Goldberg, Director
301 E 17th Street, Suite 551
New York, NY 10002
E-mail Address: firstname.lastname@example.org
The Women's Center
Contact: Dr. Debra Shabas - email@example.com - (212) 273-6100 ext.21
The Women's Center is a multidisciplinary, comprehensive health and wellness program for women with acquired and developmental disabilities. It is an Article 28 clinic and takes Medicaid patients.