I wanted to come back around to the subject of pelvic floor dysfunction and the therapy I’ve been undergoing for the last couple of months. I started pelvic floor therapy for several reasons: First, I’ve experienced a steady decline in the ability to sense pleasure and orgasm over the last 10 years. Second, I have nearly constant bladder pain on urination, a burning sensation, but every time I am tested for a urinary tract infection, it turns out negative. Third, when I have this burning sensation, I sometimes become incontinent. Finally, I’ve also lost some sensation around the anus and can’t always tell when I need to have a bowel movement or when I’ve begun or finished having one.
While these things can be embarrassing to discuss, I know I’m not alone in these problems and I share these things so I can help other people who may not be willing to raise their hands and ask for help without some encouragement. Also, they are physical challenges I did nothing to create, so really there’s nothing to be ashamed about. The ways in which chronic illness can change a body are many and various and there is no function that goes untouched when it comes to the EDS trifecta of having EDS, POTS and MCAS. And believe me when I say your general practitioner, gynecologist or urogynecologist has heard all of these things before. It’s nothing new to them and they certainly won’t think any less of you for seeking help.
Barring any impingement of the spinal cord as the cause, the primary cure for these ills is to do a kegel, but many people have difficulty doing them correctly. One of the coolest things about kegels is that you can do them anywhere without anyone knowing that you’re doing them. It can be your little secret. But in order to do them properly and build all the supporting muscles, you first need to get some help from a pelvic floor therapist.
Beginning Pelvic Floor Therapy
It’s an intimate sort of therapy, so it’s performed by someone trained specifically for this sensitive situation. On your first day, you will meet your therapist and will likely be escorted to a private room where she will ask you about your history and specific symptoms. Be clear if you have EDS or another connective tissue disorder, so they know it needs to be accommodated. During your evaluation, your therapist will likely ask you to undress from the waist down while they leave the room and you get under a sheet on the table so they can do a pelvic exam and possibly an anal exam, testing muscle strength. They do this two ways, by manual manipulation (most likely you already went through this at the urogynecologist and it’s much the same) and by using an EMG while you do some kegels.
To test through EMG, they simply attach a few electrodes. The EMG shows the strength and length of the contraction and it’s a great tool to measure where you are starting out. If your therapist uses an EMG, you will be tested periodically throughout the duration of your therapy visits in order to track your progress. I found the use of the EMG to be really reassuring, as it proved I was indeed making progress despite many difficulties I was experiencing in the midst of this time period due to MCAS that often made me feel like I wasn’t. I also didn’t have to fully undress from the waist down for these tests (I got to keep my underwear on), so it wasn’t as uncomfortable as I thought it would be.
The Kind of Exercise You Will Do in PFT
Then the real work begins. Once tested, the therapist will decide the length, duration and number of kegels you should be doing each day. They will also add on core strengthening exercises, as it’s very important to overall pelvic health. They may also work on leg strength as this all ties in. My therapist, who I feel is a particular blessing and I plan on using for all of my future therapy needs, has gone so far as to work with my ever collapsing ankles and even added shoulder and arm strengthening exercises, as she knows I didn’t get the therapy I needed after being bedbound for so long. She also took the time to watch me do all the exercises I was already doing and helped me correct my form or improve on them and stay within normal range of motion which is so important for zebras. Drink in whatever they’re willing to give you. It’s precious.
Other Concepts in PFT
My therapist also introduced the idea of bladder training to me once I stopped taking my bladder control drugs. Essentially, it’s about taking control of your bladder rather than letting it control you and ceasing old behaviors, such as peeing right before you leave the house or doing a kegel and calming everything down when you feel the urge to go, but you know it’s too soon, in order to extend the time between bathroom visits. I came up with the slogan “mind over bladder” to focus on in the tougher moments, which both makes me laugh and provides a little motivation.
She also talked with me about my bowel movements and how to encourage them more naturally and work with my body, rather than straining and struggling, which has had some pay off. It’s difficult to describe without the benefit of examples, unfortunately.
How it Helps
Now that I’ve been through my therapy and have nearly graduated, my pelvic floor is not the only thing that is much stronger. I have a good deal more strength with the changes she made to my overall workout routine, my ankles are the strongest they’ve been in years and I have a stability that I haven’t enjoyed in years.
My PC muscles are much stronger. I’ve gone from using the bathroom every 1-2 hours to using it every 3-4 hours. I have a much more enjoyable sex life and bowel movements aren’t nearly so mysterious as they used to be. Unfortunately, I still have issues with burning pain, but I’ve come to realize this is interstitial cystitis and no amount of therapy will cure that. Hopefully with the use of quercetin and other things I am doing to address my MCAS I will eventually prevail.
My only regret with this whole experience is that I didn’t insist years ago on exploring these problems when I started developing them in the first place. If you’re having problems with any of the things mentioned above, don’t wait. Often the solution is easier than you think.