When I was in graduate school, I was forced to come up with a business plan to open up a physical therapy clinic. It was a group project, so I had to work with others (which I don’t prefer to do because everything has to be my way). That wasn’t easy for me, but I loved my classmates and it ended up being really fun. Through the collective effort, we came up with something pretty incredible that I was immeasurably proud of. We were the only group that decided to come up with a non-profit physical therapy clinic. It would be a clinic serving people with amputations. It would be austere and efficient. We called the clinic Residual Hope.
The second step of this project was to pitch the idea to a group of “investors” (our classmates). This was the part that really surprised me. Though our business plan certainly had holes in it, we saw that our pitch moved several classmates – even to tears. Though it may sound cheesy, there was a line at the end of my own personal speaking part and that line has always stayed with me. And that’s what I want to share with you – this phrase, this concept that stuck with me.
And here it is:
“When you are at the end of your rope, tie a knot and hang on.”
We all get to the end of our rope, physically or psychologically. But, with pelvic pain, sometimes you get to the end of your rope and no one understands that you’re there.
It may feel like your providers have done everything they are capable of doing.
It can feel like your family is tired of hearing about your pain and your limitations.
It might feel like your friends want to ignore the topic of your pelvic pain so they stop contacting you.
It could feel like you are absolutely alone and no one else is suffering the way you are.
And then you look back up the rope and think about…letting go….
See, when you’re at the end of a rope, tying a knot from there takes a lot of strength. When you’re at the end of a rope and you don’t even know how to tie a knot, you feel like you’re fucked.
So, for those of you who feel too weak or don’t know how to tie, I’d like to attempt to shed some light onto how to tie a knot.
Step One: Form a loop and put the end through it
Realize that you are not the only one with your pain. If you feel alone or misunderstood or crazy, know that others feel the same exact way. If you feel angry and cheated, know that others feel the same exact way. Try to reach out whether it’s through your physical therapist, a pelvic pain association or the internet to others who feel the same exact way. But, be careful to avoid people who love being negative for the sake of being negative. This is not helpful for them or for you.
One thing I try to do is connect my patients with each other. If I have a patient that is feeling really overwhelmed, I’ll connect them with another patient who is handling the situation well or I’ll connect them to a patient that has improved. Of course, I get permission from both of them and make sure that I am not violating their rights in any way. A lot of times they just write each other via email and never meet, but it’s been a valuable resource for them.
Sometimes patients go to Facebook groups and find someone they connect with. I’ve even had patients meet their Facebook friends in person – even ones that live in other states. But, again, beware of the negative people. Ignore the negative people. You do not have room in your life for someone who has no hope and no positivity. We are trying to tie a knot here, not sever the rope one fiber at a time.
What I’m saying is this: Get a circle of supporters. Whether they are people that were already in your life or not. Get a circle and put yourself in the middle of it. Surround yourself with love and hope and peace and knowledge.
Step 2: Pull both ends tight
Don’t accept mediocre care. Push the boundaries of what is considered “normal” medical care because “normal” isn’t good enough. What I mean is that if your doctor says that they’ve never had anyone with your kind of pain so they cannot help you, don’t end there. Ask for who they think could help you. Ask if they could ask anyone they know about your case. Ask if they wouldn’t mind looking into your specific symptoms to see if they can figure out how they could treat you. Ask them to go beyond what they are doing.
If you are seeing a physical therapist and they compare you to other patients and tell you that you should be better by now – ask them what they can do differently. Ask them who they can talk to for more guidance. Ask them if they can call a specialist to help them figure out your case. Ask them if they’ve appropriately cleared your spine, your alignment and your hips. Ask if they’ve thought about you as a whole person and not just a pelvis. Ask if you can see another physical therapist.
If you are seeing a psychotherapist that thinks your condition is rare, tell them that pelvic pain is not rare, it’s just misdiagnosed and misunderstood. Ask them if they are willing to do research on pelvic pain. Ask them if they honestly think they are a good fit for you. Ask them if they are interested in treating someone with pelvic pain.
Do your research and decide if it’s worth getting on a plane to see another provider. There are a handful or two pelvic pain specialists across the United State. It is my honest opinion that each specialist treats uniquely and each are best suited for a particular type of diagnosis or set of symptoms. So pelvic pain specialist number one is going to be really amazing at curing people with conditions A,B and C while specialist number two is going to be fantastic at curing conditions D,L,G and specialist number three is going to be the boss at curing conditions S,E,Y. See? It’s confusing and it’s frustrating, but I believe the answers are out there! Sadly it just costs time and money and trial and error. I tell my patients that I will take them as far as I can with my set of physical therapy skills (which by no means should remain static or fixed), but it might be possible that for a complete resolution of their pain they will need to get a specialist on board. People don’t always want to hear that, but I would be a fool to tell patients that I can eliminate all patients’ pelvic pain with physical therapy alone. While I feel pelvic floor physical therapy is typically the first line of defense, we are not the end all be all, by any means.
Your providers have got to be pulled into the right direction, but you are not off the hook! You have got to do what is asked of you. If there is a stressor or a pain provoker in your life, you must take care of it. If you are given homework to do (and it does not cause pain) you must do it exactly as prescribed. If you are told you would benefit from a variety of approaches, you really need to try them. You have to be proactive in your part of healing, the providers only do half of the work. You must pull yourself into the right direction. Without this, there is no knot.
Step 3: Look up at the knot, place your hands on it and hold on
So you’ve done steps one and two. You’ve found a circle of support and you’ve pulled for the best care for yourself. Now it’s time to recognize that you have good reason to hang on.
Medicine is not complete. Medicine is a practice. We knew very little about pelvic pain fifteen years ago and we will know more tomorrow, next year and fifteen years from now. I’m not telling you that you need to wait to get better, I’m telling you that there is hope to be had.
I moved to a new house in the same city. It’s supposedly a super “green” neighborhood. Kind of an experimental neighborhood. Everyone has solar panels and the neighborhood buys its fruits and vegetables from the weekly farmer’s market. It’s a bit Truman Show-y, everyone agrees. Even the same people walk by at the same times every day. No joke. But, what gets me is the damn Google self-driving cars with California license plates. They aren’t actually self-driving yet. They are testing for I don’t know what, but these cars drive up and down my street literally thirty times a day – every day. I want to know what they are doing because if they are learning the streets of America one neighborhood at a time…it will take a Google years to create that self-driving map!
Self-driving cars. Pretty futuristic. I never thought I’d see a day with self-driving cars. Last year, three years ago, five years ago, fifteen years ago…who expected this (other than Google?). But, it’s here. It wasn’t here before, but now it is here. Get what I’m saying? Pelvic pain treatments are in the works, they are being tested, they are being trialed, we are learning more, we are getting better and the healing is coming.
Based in Austin Texas Sara K. Sauder is a member of the International Pelvic Pain Society, the International Society for the Study of Sexual Women’s Health, as well as a member of the American Physical Therapy Association and the Section of Women’s Health (SOWH). Sara is on the Executive Committee of the APTA’s Special Interest Group on Male Pelvic Floor Dysfunction.
Sara’s primary interest is pelvic pain and currently authors a blog, Blog About Pelvic Pain, focused on issues relating to treatment, diagnoses, and care for pelvic pain. She is constantly learning about new treatment techniques and pursues opportunities to learn from pelvic pain specialists across the country. Her goal is to help people living with chronic pain learn how to manage, improve and hopefully abolish their symptoms. She feels patient education is vital to recovery and she works to have open communication with each patient’s medical team. Sara believes that the mind and the body work together to both create and eliminate pelvic pain.