When I first started learning about Ehlers-Danlos Syndrome (EDS), the issue of “tightness” came up. Some of us with EDS feel as though our muscles are tight. Our faulty collagen makes the ligaments and tendons too weak to hold the bones and joints together properly. To compensate, the muscles have to work even harder, which causes the muscles to spasm, which in turn makes them feel tight.
To combat the tightness, we use massages, muscle work, and stretching to relieve the pain. This can make the muscles strong enough to hold the joints together so that they don’t have to work so hard. Sometimes, though, these remedies can cause greater discomfort. Practitioners must be careful not to relax the muscles too much as this is more of a hindrance than a help. (Muldowney, 2015).
But what does all of this have to do with pelvic pain? The hard truth is that collagen is everywhere in the human body. While there is more collagen in some places than others, it is nevertheless a fundamental part of human anatomy. This means that it affects every part of the entire body to some extent. For many female EDS patients, this includes the pelvic floor weakness. Initially, I thought of the pelvic floor encompassed only the vagina, but it is connected to and involved with so much more. Anyone who has ever had pelvic pain will tell you how much it affects movement and bodily functions. The pelvic floor encompasses the abdominal muscles, and your crotch connects to your legs. As a result, walking, sitting, and lying down can be painful.
Pain medications can ease discomfort, but physical therapy is the most common solution. It does work, but it can be difficult to discuss private parts. Everyone has pelvic floor muscles, though, and strengthening the pelvic floor is the key. Physical therapists will work with the muscles of the abdomen and/or thighs to help the muscles to relax. Hormone therapies can also make a difference depending on the symptoms. Desensitization exercises can help as well. Gynecologists can also uncover sources of irritation such as laundry detergent, fabric softener, soap or body wash, lotion, and douching.
My pelvic pain began years ago, but it finally became unbearable last spring. I had an appointment with the first gynecologist who would listen, and she referred me to a pelvic physical therapist. She spoke to me honestly but compassionately. She said that it had taken me years to get to this level of pain and it was going to take time and dedication to lessen it. My pelvic PT could not say what my baseline would be but that we would reach my goals together. So far, it has been immensely difficult. I have experienced setbacks, then improvements, then flares all over again. Much like how my regular physical therapy has gone. Since I have not been making enough progress, I have had a botox injection into the muscles of my pelvic floor. While this sounded extreme and bizarre to me, it can calm those muscles so that physical therapy can progress without interference. It has worked wonderfully so far, and I hope that continues, as we all need all the help that we can get!
Muldowney, K. (2015). Living life to the fullest with Ehlers-Danlos syndrome: A guide for a person living with EDS to achieve a better quality of life. Denver, CO: Outskirts Press.
Yael Gazit,. Giris Jacob, and Rodney Grahame. Ehlers–Danlos Syndrome—Hypermobility Type: A Much Neglected Multisystemic Disorder. 2016 Oct; 7(4): e0034. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5101008/