***The purpose of this post is to give light and exposure to what physical therapy is like for those of us with IC and PFD. This is not in any way meant to discourage anyone from going to PT. PT is extremely beneficial in healing those of us with IC/PFD. I would not stop going to PT for anything because it truly helps me. And the comparison that physical therapy is like physical torture is tongue in cheek. ***
Every Monday I go to physical therapy (PT) for my Pelvic Floor Dysfunction (PFD) and Interstitial Cystitis (IC). My pelvic floor truly is dysfunctional so it needs it. My PT is not just focusing on the pelvic floor, it focuses on many parts of my body…thighs, abs and back. All of these body parts hurt because of my IC and PFD.
What makes my pelvic floor so dysfunctional… my muscles tighten up so much that I can’t pee. I am physically unable to pee. I sit down to pee because I need to pee (often due to my IC). And I just sit there. At it’s worst, I’ve sat on the toilet as long as 15 minutes trying to relax enough to just be able to pee. It’s excruciatingly painful in a way that is hard to explain. The more stressed out I get the worse the issue becomes. This applies to my entire body. My whole body seems to want to protect my bladder… so it tightens up to do so and then forgets to release. So I am just walking around all the time in pain because all my muscles in my body are so tight. But PT does help with that.
And at this time my PT is indefinite…as in there is no timeframe in which I will be going. Usually, people go to PT and they are told this will take 4-6 week or something like that. But in my case, and others like me, who knows how long it will last. I have been going since mid-December 2016 and there is no end date in sight at this time.
My physical therapist, Jen, is great. She is very understanding and patient. She exudes empathy and always makes sure that I am okay. That being said, I’m pretty sure PT is actually physical torture in disguise.
People wonder and often ask me about how one does PT on the Pelvic Floor Muscles (PFM). Their first question is usually something like you do kegels right? The answer is definitely not. Kegels are the opposite of what we want to do. Although there might be a time and place for them in PT, now is not that time.
Pelvic floor muscles are inside of us, so needless to say, a lot of the work in PT is done internally. Not every physical therapist is trained to do this. This is a specialty that can be difficult to find and often insurance doesn’t cover it. Not every Joe Schmo physical therapist is qualified to do this job and if they say they are…run far far away. We need proof of that…because these are our personal bits. My lady bits are not to be trifled with by someone who wasn’t properly trained to trifle with them.
And yes… it hurts. A lot. There was one moment that I can recall so vividly when my physical therapist was putting pressure on a trigger point inside of my on a pelvic floor muscle and it hurt so badly I almost threw up. It’s not like that every time, but it’s always painful…just like PT tends to be.
Generally, after PT, I leave in excruciating pain…I can barely walk for a few days up to a week after. I tend to flare up for a least a couple of days afterward too. But I always remind myself that it will help my pain in the long run. And I have seen improvements since I have been going…it usually one step forward and two steps back. And I also remind myself that I have to get worse before I get better. The pain that is caused during PT is temporary and over time will benefit my body immensely.
I also have at home PT exercises to do. I have a walking program which is “simple” enough …where I have to purposefully walk to improve my walking daily because I struggle to walk any distance these days.
And recently she added the bridge and clam shell exercises. The bridge is when you lay on your back with knees bent and lift your body up while your hands are pressed on the ground. The clam shell, or clam jam as I prefer to call it, is where you lay on your side with your legs bent with one leg on top of the other and lift the top leg up which gives the look of a clam opening. The clam jam is one that I struggle with the most right now because I am very tight in the hip and thigh area.
There used to be a time when I did yoga daily and I was so ridiculously flexible…it wasn’t even that long ago. It’s like out of now where I am no long able to do yoga like I used to. I can barely do a clam jam, let alone walk a given distance.
My last home exercise uses a tool called a Therawand, pictured below.
As you can see it looks like a dildo or G-spot stimulator, but I promise you that there is no stimulating going on when the Therawand is in use…TMI? Too bad. This whole blog is TMI in a way. I want people to understand what people with PFD/IC and other similar chronic illnesses go through and the only way to do that is to share my story.
The Therawand is used to press on trigger points to relieve tensed muscles which is the same thing my physical therapist does when I go see her. The difference is I have control over this and since I am at home I tend to be in a more relaxed setting…so in theory, it should hurt less. Although it usually doesn’t hurt less.
The Therawand does not get used alone, that would hurt way too much… more than it already does. Lubrication is required. And because I am very sensitive I am very careful about the lube I use. For this, I chose Aloe Cadabra which is a natural and organic aloe lubrication. I just use the regular “unflavored” kind but they do have different flavors or scents.
PT is a special kind of hell that has the ability to hurt so good and just plain freaking hurt until the point of wanting to vomit. But if you’ve ever had PT then you know that it takes awhile to see the progress and pelvic floor therapy is no different.
After my hellish week last week, I went to PT this past Monday and told Jen about said hellish week. And she was like wow okay that is rough. So we did minimal internal work because of that darn speculum from when I was at the gynecologist, which really did a number on me that flared me up something fierce. She decided to work on my head some after that because I told her about my allergic reaction monster migraine from hell.
She squished my head on both sides and it was oddly relieving. And then she squished my head on my forehead and the back of my head…and again…oddly relieving. She did all kinds of PT things that involved pressing on my jaw, head, and neck. And while it hurt it also felt good like it was relieving something. My entire head had been tensed up and had all kinds of trigger points from that monster migraine. And she did PT things that left me feeling very weird and but also reduce the tension in my head as well…which was good.
So what am I getting at? Well… that’s hard to say but I think my point is that PT sucks. And I genuinely just want people to know and understand what goes on during PT for IC/PFD…because it’s not all kegels and dildos. It’s personal, private and even embarrassing for many people to talk about.
It is not fun. And I’ve seen people talking in the IC support groups, saying stuff like their partners don’t understand why they go to PT or what they do in PT. Or even that their partner accused them of going to PT to “just get off”…which is not only mean and just a jack ass thing to say…but it’s also categorically false. There is nothing fun about pelvic floor therapy. It’s painful and can be traumatic.
PT isn’t for everyone but for those of us who need it…it helps tremendously. Having a chronic illness is never easy. And putting ourselves knowingly and willingly in more pain each week never feels good…but we do what we must and we just tough it out with the hope that one day we will find the relief that we have long been seeking.