In my book I say it time and again. You need to advocate for yourself. But what does that mean? And how exactly do you do it? At its simplest, advocating for yourself means making sure your doctor has all the information they need to provide helpful treatment. It is less about being pushy and more about communicating effectively.
There are two types of medical problems: acute and chronic. An acute medical problem is something that requires immediate medical attention or it may result in permanent disability or death (for example, breaking an arm or having a heart attack). Doctors are superstars at taking care of these types of problems.
A chronic medical problem is one that you could go a lifetime without seeking medical treatment for and still manage to get by (for example, getting frequent migraines or suffering from daily gastrointestinal distress). Doctors are not so great at caring for these types of problems. They may do a few preliminary tests to make sure your problems are not an indication of something life threatening, like cancer, but that is usually the end of their efforts.
Pelvic floor disorders are in this second category. You will not die from a pelvic floor disorder. They are a chronic problem, but a manageable one. They are also common, and for some doctors common means ‘to be expected’ or ‘normal.’ As a result, most general practitioners and even women’s health doctors tend to be dismissive of pelvic floor disorders.
As the patient, what can you do to get the help you need in this situation?
Before your appointment
Write down a list of medical concerns. Be specific, even if it is embarrassing. Are you leaking urine or feces? How often? How much? Do you feel a bulge of tissue protruding into your vagina? Does that bulge extend to or below your vaginal opening? Is your cervix at or below your vaginal opening? Does your bulge or cervix create pressure on your labia that results in discomfort? Do you have any pelvic pain during intercourse? How about throughout the day? Does it feel uncomfortable to sit or stand for more than a few minutes?
Next, write down a list of the ways your pelvic problems are impacting your quality of life. Again, be specific. Have you needed to limit or adjust your daily activities because of your pelvic floor disorders? Do they make it hard to lift or care for your children? Do they interfere with work, exercise, social interactions, or sexual intimacy? Are you experiencing anxiety or depression? Are you self-medicating with drugs or alcohol?
Schedule an appointment with your women’s health doctor. If possible, notify them of the reason for your visit before you arrive.
During your appointment
“Hi Doctor, I am here because I am leaking feces and sex is painful.”
General practitioners and gynecologists are unlikely to ask specifically about incontinence, sexual health problems, or pelvic pain. Some will ask, “What brings you here today?” before your exam, but some will not even do that. You have prepared a list of your problems. Now you need to take the initiative and tell your doctor why you are there. Tell your doctor or nurse before your exam.
It is possible that this is all the advocating you will need to do. If your doctor proceeds to ask you more questions about your problems, does some quick internal assessments of prolapse stage and sphincter or pelvic floor muscle strength, provides you with relevant information, and sets you up to see a specialist, you are in good hands.
If your doctor is dismissive of your concern, you need to communicate how these medical problems are affecting your life. After one of my gynecological exams the doctor shrugged and said, “It looks like you have a little bit of prolapse.” I remember getting angry, because the problem did not feel little to me, but I did not speak up. Years went by before I got real help. I wish I had said, “Well, that little bit of prolapse is causing big problems. I am in daily pain and discomfort, so much so that I find it difficult to work or exercise or have sex with my husband.”
Hopefully your doctor will hear you and proceed as above at this point. If they are still dismissive, this is when you need to ask to be referred to a specialist. If you want to get a thorough assessment and multiple treatment options, ask to see a urogynecologist. If you want to get more information and see whether physical therapy will reduce your incontinence or relieve pelvic pain and other symptoms, ask to see a pelvic floor physical therapist. If your main problem is fecal incontinence, ask to see a colorectal surgeon.
Easy enough so far, right? No need to get agitated or disrespectful. You are the expert on your own symptoms and how they affect your quality of life. You are helping your doctor do their job by giving them all the important information, whether or not they asked for it.
Here is where things can get hard. If your doctor says that you don’t need a specialist or that it is best to wait a few years and see how things develop, you need to push back. When it comes to pelvic floor disorders, the wait and see approach is an outdated way of thinking. Pushing back could mean continuing to argue your case with this doctor, asking for a second opinion, or calling in a complaint about the doctor you were speaking with so that you can get an appointment with someone else.
A little anger might do you good
To motivate you with some righteous anger, I present you with the following excerpts from Rage Becomes Her: The Power of Women’s Anger, by Soraya Chemaly. Chemaly summarizes a study of the medical repercussions of childbirth as follows:
More than a year after giving birth, 77% of mothers endured back pain related to gestation and birth, 49% suffered urinary incontinence, and 50% lived with persistent pelvic pain. After childbirth almost 30% of women are left with undiagnosed pelvic bone fractures, while 41% have tears in their pelvic floor muscles. For almost a quarter of all women, sex is painful even 18 months after giving birth.
Many women experience pelvic floor disorders and debilitating pain for more than a year due to undiagnosed pelvic bone fractures and muscle tears. As anyone reading this blog post knows, these problems are often dismissed by doctors. What you may not know is that this is in keeping with a general dismissal of women’s pain by medical professionals.
Chemaly writes: “In their 2001 study, ‘The Girl Who Cried Pain: A Bias Against Women in the Treatment of Pain,’ Diane E. Hoffmann and Anita J. Tarzian pointed out that women are ‘more likely to have their pain reports discounted as emotional or psychogenic and therefore not real.’”
Chemaly describes how women who present themselves as put together, for example, wearing makeup and a smile on their face, or wearing professional attire instead of sweat pants, are less likely to be believed when they report being in pain. She writes: “Among the more insidious stereotypes surrounding pain is that an attractive and usually young woman can’t possibly be sick. Her pain, when she says she has it, must be some sort of exaggerated delusion. … Studies show that overcoming what is called the ‘beautiful is healthy problem’ requires that a woman provide her own medical evidence and signs of disability for doctors to believe them.”
The emphasis in that last sentence is mine. This is what you need to do to advocate for yourself in a world that treats women’s pain as a psychological problem.
Chemaly mentions that “men may be treated more quickly because they are more comfortable asserting themselves with doctors and other hospital staff. That women are socialized as children to be more deferential puts them at a particular disadvantage in medical settings where status, like that of a doctor or other medical professionals, matters. People who communicate anger are treated more quickly than those who wait politely.”
So speak up. Give your doctor a list of your pelvic problems and signs of disability. Ask to be referred to someone else. And if they dismiss you, by all means, get angry.