interview with Kasey Keever (she/her)
Please note that we are discussing Pelvic Floor Dysfunction unique to people with uteruses, although the chronic pelvic pain condition can affect people with penises, too.
You know the feeling when your entire body tenses up if you’re overstressed? Something similar happens when the muscles in your pelvis are stressed out, or overactive, too. This chronic pelvic pain condition is known as pelvic floor muscle dysfunction (PFMD), otherwise known as hypertonic pelvic floor. Your pelvic floor is the group of muscles and ligaments that support the uterus, bladder, and rectum. Contracting and relaxing these muscles allows you to control your bowel movements, urination, and, for people with vulvas, have penetrative sexual intercourse, insert tampons, and masturbate.
These pelvic floor muscles can become so tense that they are incapable of relaxing and you are physically unable to keep them from contracting, disrupting your daily life with pelvic pain,, soreness, difficulty urinating or having a bowel movements, and having sex with yourself or someone else.
WHAT CAUSES PELVIC FLOOR DYSFUNCTION?
Like most chronic pelvic pain conditions, the full causes of pelvic floor dysfunction are still unknown. Doctors can, however, link pelvic floor dysfunction to conditions or events that weaken the pelvic muscles or tear connective tissue. Common factors include:
- Traumatic injuries to the pelvic area (like a car accident or sexual trauma)
- Pregnancy Your pelvic floor muscles and tissues can become strained during pregnancy, especially if your labor was long or difficult.
- Overusing the pelvic muscles This can include going to the bathroom too often, pushing too hard, or overworking your muscles in pilates or yoga.
- Being overweight The extra weight puts strain on your entire body
- Advancing age Muscles atrophy as we age.
- “Holding it in” too long can result in an overactive pelvic floor.
- High levels of stress, anxiety or living in a constant state of fear and dread can also result in the pelvic floor muscles tightening involuntarily.
PAIN AREAS & SYMPTOMS OF PELVIC FLOOR DYSFUNCTION
If you’ve ever had a UTI, you know how frustrating it is to feel the urge to pee, but unable to relieve yourself. People suffering from pelvic floor dysfunction may feel this constantly, and it severely affects one’s quality of life. The pelvic floor muscles can become so tense they are incapable of relaxing, which can result in the inability to do regular activities like have sex, insert a tampon, or masturbation. Many dealing with PFD feel their sense of identity is at stake if and when they are unable to “perform” in the bedroom; it can be devastating to find that you want to have sexual intercourse, but your body refuses because of the pain. While these feelings are normal, remember that it’s not your fault, and it’s nothing to be ashamed of.
Physical symptoms of pelvic floor dysfunction include:
- Pain, pressure, or fullness in the vulva, rectum, pelvis, and/or lower back
- Pelvic muscle spasms
- Urinary issues, such as the constant urge to urinate or painful urination (dysuria)
- Pain during or after sex (dyspareunia)
- Trouble/pain inserting tampons, fingers, sex toys, etc
- Excessive tightness in hips, hamstrings
- Difficulty having bowel movements / constipation
- If left untreated, pelvic floor dysfunction can lead long-term colon damage, or infection.
DIAGNOSIS & TREATMENT OF PELVIC FLOOR DYSFUNCTION
You might think your symptoms are embarrassing, but it’s important to seek out a proper diagnosis to manage your pain. To make a diagnosis, your doctor will perform a physical evaluation to check for muscle spasms, contractions, knots, and weakness. They may perform an internal exam by placing a perineometer (a small, sensing device) into your rectum or vagina to see if you are able to clench or contract your muscles.
A less invasive option involves placing electrodes on your perineum (the area between the scrotum and anus or vagina and anus) to determine if you can contract and relax pelvic muscles.
Pelvic floor dysfunction is a highly treatable condition. Treatment often consists of a mix of physical therapy and finding ways to relax body and mind; the goal is to relax the pelvic floor muscles to make bowel movements easier and to provide more control. While surgery is an option in severe cases, a holistic approach is always encouraged first and may include the following:
Pelvic floor physical therapy
Sex therapy and/or cognitive behavior therapy can be useful for those who feel that anxiety or other psychological issues are negatively affecting their healing process
Biofeedback allows your therapist to monitor how you relax or contract your pelvic muscles through special sensors, which will help inform treatment
Self care & relaxation techniques including pilates, yoga, and gently stretching and breathing exercises
Warm baths can help improve blood circulation and relaxes the muscles.
Muscle relaxants can help with symptoms and prevent your muscles from contracting.
Botox can help hold the muscles in place
Q & A with Kasey
A note from Kasey @prettywithaphd I wanted to clarify at the beginning of my answers that I am not a medical professional and that while I am a PhD candidate, I have not yet received my degree; it is also important to clarify that women’s health is not my current area of research.
This is not intended to diagnose or treat pelvic floor dysfunction.
My purpose in providing insight into pelvic floor dysfunction is to help other women going through the same thing I did: frustrating misdiagnoses and prolonged use of unnecessary antibiotics.
In my personal life, I use supplements for prevention of many women’s health issues. This choice is individual and you should always consult a doctor about potential reactions between supplements and prescribed medication, including birth control.
I want to encourage them to seek help from medical professionals if they are able. I also want to encourage a second opinion for those that are hitting dead end after dead end like I did.
What would you recommend to someone who is trying to find the source of their discomfort?
I strongly recommend finding others whose experience mirrors yours. They will be able to share insight into the steps you need to take to identify the cause of your pain: what specialists they saw, as well as the diagnosis they were given.
My pain was almost strictly UTI-like, with soreness and burning when using the bathroom. It was aggravated by exercise, sexual activity, wearing non-cotton underwear, wearing cotton underwear, wearing clothes, not wearing clothes—you get the idea. It was ever present and nothing made it better!
Naturally, I thought my gynecologist would be able to figure out what was happening to me. I went to appointment after appointment, copay after copay. I was misdiagnosed so many times with things like UTIs, vulvodynia, yeast infections, BV, and was tested over and over again for STIs despite negative results every single time. As you might imagine, I had antibiotics thrown at me for BV and UTIs that I didn’t have. I took ketoconazole multiple times. I even used an estrogen cream for “vulvodynia.”
I also had a cystoscopy and was “diagnosed” with interstitial cystitis. I even paid for the medication, which costs well over $100! I had a vulvar tissue sample sent to a pathology lab, to come back with no useful diagnoses. I can’t tell you how much money I lost returning to her office over and over again, only to be told the same things, have the same tests run, and get nowhere. I spent at least $1k trying to get a diagnosis that would help me.
I was still in pain, there was no infection of any kind. I was put on boric acid suppositories and probiotics because the antibiotics had decimated my vaginal flora. She prescribed me Prozac because the situation had led to depression. I was diligent with the boric acid suppositories and probiotics, so how come there was no improvement?
Read more: A Guide to Vaginal Probiotics
Finally, I vowed never to enter her office ever again. I paid off the patient account and never called them again. After a lot of googling, I thought I might try seeing a urologist, since at the time, this seemed to be pain caused by urinary health problems.
He diagnosed me in less than 20 minutes with a hypertonic pelvic floor. One appointment. One copay. Off to physical therapy I went, and the rest is history. All it takes is one person who is familiar with what you are experiencing to change your situation for the better. Help came from an unexpected place. I should write him a thank-you letter and send it to his office.
I type my whole experience to encourage you to do two things: talk to others who are in a similar situation, and do not be afraid to seek a second opinion.
What products or methods have you used to help alleviate your pain?
I have already discussed the litany of antimicrobial medications and other products for the misdiagnoses, and not a single one of them has helped. The only thing that truly helped me was physical therapy. It involved relaxing the pelvic floor muscles with stretches and mindfulness. The therapist also worked in some strengthening exercises, like Kegels, gradually. We always finished with a relaxation exercise. The only problem is that physical therapy can be expensive if you either have no insurance or your insurance will not cover it.
So I can offer just a few stretches that I learned, and still use, from physical therapy:
The Happy Baby Yoga Stretch Anyone who goes to yoga will know this one. You lie on your back with knees in toward your chest and hold on to your toes.
Wide-knee child pose Again, a popular yoga pose, with a modification. Widen knees to at least hip width apart before leaning forward onto the mat.
Pigeon pose More yoga…. I don’t know how to explain this one but it works for the pelvic floor and tight hips.
Pelvic floor bulges The bread and butter of my PT routine. It's easiest to do while you are inhaling. So, take a big belly breath and push like you are trying to fart. Seriously. This one you can do almost anywhere!
Deep Squat You are not doing this for glute strength. Squat all the way down. Your bum should only be inches from the floor and the backs of your thighs should be touching your calves. If you have difficulty getting up from squatted positions, skip this one.
If you want a guided stretch, the YouTube channel Flower Empowered has a guided 15minute pelvic floor relaxation routine.
How does chronic pain affect your day to day life?
Before proper diagnosis and physical therapy, it made my daily life full of anxiety, stress, and dread. I was afraid of the pain starting every single day. It affected me at work, because the pain would come after using the restroom and last for thirty minutes or more. I made more frequent restroom visits because I thought drinking more and more water was going to help.
Hypertonic pelvic floors tend to create a sense of urinary urgency, a lot like a UTI, but the pain is not coming from your urethra and there is no infection. I often said no to plans and didn’t feel like doing housework, stopped exercising, and slacked on taking care of myself.
These days, it only affects me mildly, because when it recurs, I know exactly what to do! Take a few minutes to relax and stretch it out. It is so easy to do pelvic floor bulges in my chair at my station—no one is the wiser.
What are the risks if you don’t treat pelvic floor dysfunction?
Depending on the type of dysfunction, the risks of letting it go untreated are different. For some pelvic floor disorders, complications of untreated dysfunction can be pain, infection, and long term damage.
For my situation, a hypertonic pelvic floor, the main issues are stress, pain, and disruption of your relationships and daily life. It definitely affected my personal relationships; I was so scared to start dating because I had no idea what was wrong with me. I felt that I had to “fix myself” before I would be ready to date someone, because I knew dating almost always involves a sexual relationship for me.
Now that I am dating again, I’ve changed my mindset. I am with someone who wants me to put my health first, and if I need a break from rolling around in the sheets, there are no complaints and no shaming. Sometimes, he needs a break too. If you are with someone who complains when you take a break from sexual activity for your health, I strongly urge you to reconsider the relationship—even if it hurts. Because the number one thing I learned from going misdiagnosed for over a year is this: your most important relationship is with yourself and you should always put your own mental and physical health first.
READ MORE: The Intersection of Sexual and Mental Health
Do you have any idea what caused your pelvic floor dysfunction?
The answer to this question also varies with the type of dysfunction. The most common causes of pelvic floor dysfunction are childbirth, pelvic surgery, pelvic trauma, and obesity. I have never carried or delivered a child, or had pelvic surgery/trauma, and am medically considered to be an appropriate weight. For me, it is easy to exclude these as the potential cause of my problems.
Having a hypertonic pelvic floor, from what my urologist and PT explained to me, came from stress and clenching it unconsciously. It could also come from repeated lifting of things that were too heavy for me, which I sometimes would do at work or home. I think it was a combination of those three things.
All this being said, unless you meet one of the obvious criteria, like having birthed multiple children or had a pelvic surgery, it can be difficult to say what caused your pelvic floor dysfunction.
Momotaro Apotheca and its materials are not intended to treat, diagnose, cure or prevent any disease. All material on Momotaro Apotheca is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider for any questions you have regarding a medical condition.