So you have pain with sex, or you leak urine when you sneeze, or you feel a bulge in your vagina, or you have chronic constipation or any other “down there” health concern. Where do you begin? Having suffered from pelvic pain and an assortment of related health issues for years, these are my suggestions for finding the right provider, getting the help you need, and speaking candidly about tough issues.
1. Find the right provider.
Duh, right? This seems simple until you actually start searching for the “right” provider. When you don’t know what’s wrong, it’s hard to know where to begin. A few of my suggestions:
- Do a search in Google Scholar for your symptoms and look for the hospital affiliations of those writing about those issues. My pain doctor, Frank Tu, spends a few days a week conducting research on pelvic pain issues through NorthShore University Health System in Chicago, which coincidentally has an amazing pelvic health clinic.
- Reach out to the offices of those conducting research and ask for referrals in your geographic area. Keep abreast of recent research by signing up for a newsletter like the National Vulvodynia Association.
- Start with a visit to your primary care doctor or gynecologist, and ask who they would see if they had these issues. I found one of my best gynecologists by asking a pelvic floor physical therapist for the name of her gynecologist.
- Do a Google search for conferences about your symptoms or issues, and look at the lists of speakers. For example, my pelvic floor physical therapist speaks frequently on issues of pelvic pain and sensitized nervous systems (at conferences like those hosted by the International Pelvic Pain Society, the APTA's Section on Women's Health, or the American Urogynecological Society). Check out the hospital affiliations of those providers and contact them for referrals if none are in your geographic area.
- Look for blogs, chat forums, or in-person support groups that discuss your issues. Reach out to these women for provider recommendations. For example, I frequently share the names of the providers who helped me, and I’ve been treated in 4 different states. You may find information where you least expect it, and it’s worth the investigation. A few of my suggestions: Bridge for Pelvic Pain, the Women's Health Foundation, Entropy Physiotherapy & Wellness's blog, and HerViewpoint.
2. Insist upon improvement.
I had some degree of pelvic pain for 10 years. My first pain flare was at the age of 19, and I didn’t make a full recovery until I was 29. One of the biggest mistakes that I made through the course of receiving an excessive amount of medical treatment during that decade is that I did not insist upon improvement as a condition for going back to a provider. Now, I don’t mean to sound harsh: battling back severe and chronic pain is an exceedingly difficult challenge, and there won’t always be marked improvement between visits. However, the general trajectory of treatment should be upward. Your functioning should generally improve. And you should generally see improvement week-to-week.
- Discuss your goals with your provider. Achieving 0/10 pain may not be your goal. Instead, you may want to drive again, run without leaking, wear pants without pain, or carry another pregnancy. By having an ongoing discussion with your provider about your personal goals, it will ensure that your treatment remains focused on what matters most to you. If time passes and you don’t get any closer to those goals, it may be time to try a different provider.
- Remember that progress isn’t linear. This goes both ways: some weeks, you’ll experience incredible success, and other weeks, you’ll feel like your entire recovery has unraveled. That’s normal, so long as you’re taking at least 2 steps forward for every 1 step back.
- Treatment shouldn’t make you worse. If you’re receiving treatment within the framework of “no pain, no gain,” you may only get worse. I saw many providers who convinced me that I needed bruising skin-rolling and painful nerve blocks in order to improve, but it only made me worse – I never saw the improvement. If this is happening to you, it’s crucial that you cut the cord asap.
3. Speak honestly.
- Use real words. Your vulva is not the same as your vagina. Pain in your perineum is not the same as pain in your pubic bone. Coccyx pain is not the same as low back pain. For your provider to treat you, it’s crucial that they know what’s actually going on. I suggest either: (1) asking for an anatomical diagram to show exactly where you hurt, or (2) pointing to the exact spot on your body that hurts.
- Don’t sugarcoat your recovery to your provider. I have seen providers who were so well-intentioned, but who really weren’t helping me recover. I felt guilty that they were pouring all this energy into me with no results, and I felt responsible for reassuring them that they were doing a good job. That was not my responsibility, and the times I sugarcoated my symptoms to make them feel better only delayed my recovery.
- Write things down. If you’re too embarrassed to use the “real” words for body parts, or to discuss your pooping and peeing habits, or to describe how sex feels… then write it down! Send your provider an email before your appointment and give a brief update. Say something like, “This stuff is hard for me to talk about, so I wanted to give you a recap before I see you this afternoon!” Answering pointed questions at your appointment is way easier than offering up spontaneous details. Figure out what communication method is most comfortable for you and conveys the most accurate details to your provider, and use it!
4. Ask questions.
- Ask, ask, ask. Holy cow – I ask a lot of questions. “Is it normal to feel ____?” “Am I ready for ____?” “What will ____ feel like?” Running through scenarios in advance and getting your questions answered can seriously lower your symptom-related anxiety. Find a provider who encourages this kind of dialogue, and ask away!
- Don’t leave appointments confused. Appointments can be physically and emotionally draining, so it’s important that they’re worthwhile. If you receive home-exercise instructions that you don’t understand, a prescription you don’t intend to use, or a referral to a provider you don’t want to see, clarify those things before you leave! As the patient, you’re the customer. You should leave appointments satisfied and with an understanding of the plan forward.
5. Get a multi-disciplinary team.
- Get someone to talk to. I am a big believer in the transformative power of mental health professionals, especially for coping with the anxiety and depression that can accompany invisible and chronic illnesses. Ask your providers for referrals to providers who have helped other patients, and don’t hesitate to try a few providers before settling on the one you’ll see regularly.
- Find a pharmacy you trust. This seems so obvious, but I filled my prescriptions for years at a pharmacy that routinely gave me the wrong medication, screwed up my refill requests, or seemed to have my medications perpetually out-of-stock. You need a pharmacy that you trust to review your medications for interactions, chat with you about side effects, and (for suppositories or creams) prepare medications that are sensitive to your allergies. My personal suggestion is a compounding pharmacy.
- Bring in reinforcements for your caregiver. Caregivers (your spouse or parent or best friend) can get really, really burned out. It’s exhausting caring for another person, and it’s emotionally challenging to see your loved one suffer. Encourage your caregiver or partner to do things that recharge them. A few of my favorite suggestions: order their favorite food for delivery for dinner, schedule them a massage and put it on their calendar, or encourage them to spend time with friends or sign up for regularly-scheduled league sports (ensuring that they’ll follow-through on the commitment and not decide that your needs trump theirs). This is crucial for their and your health.
Do you have other suggestions that aren’t covered here? Let me know in the comments! And as always, thanks for reading!
Yours in health, xo, Erin.