Top Five Secret Requests for Doctors
from Women with Pelvic Organ Prolapse:
What Your Patients Want, but Will Never Ask
by Alyce Adams, RN, the Kegel Queen
Since 2009, I’ve taught pelvic floor muscle training — kegel exercises — to women around the world, many of whom have suffered with pelvic organ prolapse (POP). As I’ve spoken with them about their prolapse and the medical care they’ve received, certain themes arise again and again.
Unfortunately, one such theme is women’s reluctance to engage in discussion about POP with their doctors. Contributing factors include embarrassment, short office visits, the belief that doctors have nothing to offer other than surgery, and a perception that patient education is outside the doctor’s role.
Since your patients probably aren’t speaking with you directly about what they want from you regarding POP care, here is a guide to what women with POP secretly want from their doctors, distilled from what I’ve learned from working with hundreds of women over several years.
1. If you discover an asymptomatic prolapse, please tell me.
POP is so common that to providers, a mild, asymptomatic prolapse can almost seem like a normal finding. Often, a care provider discovers POP during a pelvic exam, but doesn’t mention it to the patient. Perhaps the provider assumes that there’s no reason the patient would want to know, or that there’s nothing the patient could do if she did know. In reality, the patient wants to know! The condition of her vagina is extremely important to her, even if she’s past childbearing and not sexually active. And if any preventive measures can help keep the prolapse from getting worse, she wants to take them.
2. Answer my questions about sex, even if I don’t ask them.
Women are embarrassed to discuss prolapse with their doctor, but they are really, really embarrassed to discuss sex. A woman with POP is likely to have questions like these:
“Is it OK to have intercourse? Is it possible?”
“Can I get hurt during sex?”
“I tried to have sex and there was blood. What does that mean?”
“Can I have intercourse with a pessary in place?”
“How can I make sex easier, and still enjoyable for me and my partner, in spite of my prolapse?”
Because the patient is unlikely to ask you these questions, simply ask whether she’s sexually active. If she says yes, give her the information she needs. A handout can be especially helpful, so she can bring information home to share with her partner. (And remember, please don’t assume she’s not sexually active based on her relationship status or her age.)
3. Take the time to reassure me. I’m terrified!
For you, the provider, it’s just another day at the office. For your patient with a newly symptomatic or newly diagnosed prolapse, it can feel like the end of the world. She’s wondering whether her marriage will end because she’s no longer an adequate sex partner, or she’s terrified that she’ll need surgery, or she’s disgusted by her body and wondering if she will ever feel confident and attractive again. One of my Kegel Queen members, Chris, described her feelings about POP this way: “I feel horrible…I feel sick…I feel disgusting…I’m tearful all the time.” No, POP is not a terminal illness. But to your patient, it can feel like the end of life as she knows it, a profound assault on her identity as a woman. Take a moment to recognize the emotional impact this diagnosis can have, and offer the reassurance your patient needs.
4. If my prolapse is mild, tell me how I can help keep it from getting worse.
One Kegel Queen member wrote to me that her doctor, on diagnosing a mild uterine prolapse, gave her exactly one piece of glib advice: “Come back and see me if it pops out to say hello.” What she really wanted — besides reassurance in the face of her terror that one of her internal organs might “pop out” — was information.
The two biggest questions in the mind of your newly diagnosed POP patient are these: “Will I ever be normal again?” and “Is this going to get worse?” Your patient is terrified that her prolapse will get worse. She wants to take action to help keep her organs in place, and she wants information and guidance from you about how to do this.
Help her avoid Valsalva-like pressure which can aggravate prolapse, such as from constipation, chronic cough, heavy lifting, or certain exercise moves such as crunches. Help her lose weight. Keep an open mind and support her if she wants to try a low-risk treatment such as acupuncture or Arvigo Therapy, even if there’s not yet an RCT supporting its effectiveness. (Anecdotally, many women report that these measures reverse POP.) And help her access a comprehensive, supervised program of pelvic floor muscle training (PFMT), a.k.a., kegel exercises.
5. Help me find alternatives to surgery.
When I talk with women who suffer with POP, I hear the same story over and over again: “My doctor recommended surgery, and never even said there was anything else I could do.” Many women prefer to avoid surgery. Many who decline surgery simply suffer, unaware that alternatives exist. Why leave it to your patient and Google to figure out what conservative treatments she can try? Help her with lifestyle interventions, CAM therapies (complementary and alternative medicine), and PFMT as described above in #4. Also, if she desires, help her with a pessary.
A good pessary fitting, and good pessary care, require that you go the extra mile to serve your patient. This means a lot of office visits, some of them lengthy, without lucrative reimbursement for you. Some women must try eight or nine different sizes or shapes to find one that is comfortable and effective. The patient who can’t find a pessary that works may need to try a supervised program of PFMT for two to four months, then try a pessary again — the increased mass and tone of the pelvic floor may help hold the pessary in place. Many women are reluctant to try a pessary, but thorough patient education from you can help put her concerns to rest. Success with a pessary can be life-changing for your patient: she can live as if her prolapse is gone, without the risk and pain of surgery.
When your POP patient is afraid to ask questions or initiate dialogue, it’s up to you to anticipate the questions she may have, and to reach out to offer information she may need. By doing so, you can be a true advocate for your patient’s health.