I asked my friend Beverly to write a guest blog about a topic that has affected (and is affecting) both of us. She found that physical therapy helped; unfortunately, I saw the same PT without the great results.
Our wedding night “didn’t” happen. Oh, we were in love all right; we talked about “it” and had decided not to pressure ourselves to do the deed that night but to just enjoy being together. We explored, we talked, we slept. Over the next several days of honeymooning, we explored more – and found that “it” wasn’t going to happen anytime soon.
After one particularly devastating attempt at sexual intercourse, we had to admit to ourselves that we, rather I, had a significant problem. Whatever your views on premarital sex, we chose to remain virgins according to our belief system until after we were married. Because of that decision we didn’t discover that I had a little-known condition called vaginismus which, simply put, is a spasm of the muscles surrounding the opening of the vagina. When entry is attempted, those muscles go into an extremely painful spasm which makes intercourse all but impossible, at least in a loving environment. It is known to be associated with abuse or trauma; and we discovered a pattern of emotional abuse along our journey which definitely contributed to my condition. However, I now believe something else was at work all along which was only recently identified, called pelvic floor dysfunction or PFD.
My husband (yes, he’s still my husband, after 18 sexless years—that’s commitment for you!) and I went through counseling, several different gynecological experiences (including one jerk who told me I was like a nun and just needed to have sex) and multiple times of trying this or that, to no avail. We did know that I also had Fibromyalgia; the part we didn’t understand was that it is intimately connected to the pelvic floor region, to use a word, at least for me. It is now known that PFD is a common coexisting condition in those with Fibromyalgia; but until recently, very little was being done to address its impact.
After another detour along our journey when I had to have a hysterectomy, I thought things might turn around, only to discover I no longer had bladder control when I would sneeze or laugh deep belly laughs. I knew I had to find help because I’m still young and didn’t want to resort to Depends; we enjoy travelling and had plans to pursue. I was fortunate to have a doctor who knew of a physical therapist trained in pelvic floor rehabilitation. She taught me several simple exercises and showed me the RIGHT way to do Kegels; and after several months of doing them regularly, I rarely have accidents any more. The catch is that, unlike other muscle groups, the pelvic floor does not retain muscle memory so I have to commit to doing these exercises every single day for the rest of my life. Not something I enjoy doing but it’s better than the alternative!
Then, in this month’s Reader’s Digest, I found an article entitled “The Pain Down There.” I knew immediately that this was an article I wish I’d found 18 years ago. It describes what the pelvic floor is (think of it as a diaphragm holding up all the organs above it, just like the diaphragm in your chest helps hold up the lungs, heart, and gives muscle tone as you breathe); what it does, and why it’s important to maintain the muscle tone as you age.
It also mentions that there are actually physical therapists who are specially trained in both external and internal work to help those who suffer from PFD’s effects: it’s not only vaginismus but bladder and bowel control that are affected when those muscles are either too weak or too tight. Most nursing home patients who are otherwise mobile and still have their mental acuity are admitted because of incontinence. That’s staggering, especially when one thinks about daily activities and plans for fun and adventure. I didn’t want that to be my life.
I decided to share my story recently at my local Fibromyalgia support group meeting because I had a hunch that most of them (men included) suffer or will suffer with this life-impacting condition in one form or another. Julie asked me to do a guest blog for her and I decided I wanted to help call attention to this condition that robbed my husband and me of not only a sexual relationship but children as well; it’s one thing to talk about it in terms of muscles spasming and quite another to talk about it in terms of dreams dashed and hopes destroyed. Far too many of us have suffered for far too long in silence; it’s time to get the word out and educate both the medical community and the individuals who have PFD that there is help.
As far as our relationship is concerned, we have a very strong, loving, deeply committed relationship which has seen us through this unforeseen and devastatingly difficult experience. We believe our story can help others know that there is help out there and that they are not alone in their struggles.
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