I asked my friend Beverly to write a guest blog about a pelvic floor dysfunction – a topic that has affected both of us. She found that physical therapy improved her pelvic floor dysfunction. Unfortunately, I saw the same physical therapist 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.
Do you have #Fibromyalgia and have you experienced pelvic floor dysfunction? Share on X
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michelle says
I am struggling to understand the connection to ifbromyalgia apart from it’s another source of pain. What is the scientific connection? Could the pituitary gland be responsible or is it purely muscle spasms that cause the pain, in which case it could be not scientifically connected, just another side effect.
Julie says
As with many issues, there is overlap and co-morbidity. At this point that means they often exist together, but with how little is really understood about any of these issues it’s possible that down the line they may discover a common cause.
It may simply be that the muscle issues caused by fibromyalgia also cause PFD and pelvic pain (pain is pain – and fibromyalgia causes pain – as well as muscle contractions, weakness- throughout the body)
This study found both higher prevalence of PFD in women with fibromyalgia, and also increased symptomology as compared to women with PFD who don’t have fibromyalgia.
Here’s another: https://www.ncbi.nlm.nih.gov/pubmed/26259883
This one found a higher incidence of pelvic floor prolapse among women with fibromyalgia – and again increased pelvic pain associated with fibromyalgia.
At this point, as with most studies related to fibromyalgia symptoms, it’s a matter of correlation. Until they can understand the cause of fibromyalgia itself it’s a bit difficult to advance to causation between comorbidities.
Aleya says
This is heartbreakingly accurate. I had a really healthy sex life and around the time I married my husband the fibromyalgia pain started down there. I thought it was yeast infections so I would treat them through the doctor and on my own over and over again to no avail. After a year of incredibly painful intercourse that also never satisfied my husband(we had some emotional issues that we have since been through marriage and individual therapy for), I gave up and said no more sex. Two years later I am finally ready to see a PT and am lucky enough to have one in town. I will see them in less than two weeks and am praying that this (in addition in our therapy) will lead us back to a healthy sex life.
Julie says
I’m so glad you found a PT that can help. I really hope they are able to. Also, glad to hear that you guys were able to get some help via marriage counseling to get you through this.
Melissa says
Julie- As you know, I use Botox for migraines. Several injections are administered to the upper trapezius muscles and the back of the neck to cause the muscles to relax. I’ve seen ads for the use of Botox in treating over active bladder. Is it possible that Botox could be used for your condition too? I’d assume the injections would be uncomfortable but, maybe it would work. I wish the best for Beverly and you as always.
Julie says
I think my bladder issues are more likely to related to spine issues, as PT didn’t help. For me, it’s not a frequency issue so much as just when I gotta go, I gotta go. My gyno says I have tight muscles in vaginal area, so that’s what the PT was intended for (I think).
I’d not seen the ads for using botox for over-active bladder, may look into that.
Melissa says
You’re not taking Ultram (tramadol), are you?
Julie says
No. I tried it early on and it never did anything for me except make my skin crawl.
Heather Hammel says
I saw an episode at least a year ago on MTV’s (I think it was MTV or maybe it was VH1) show, True Life that had three women on there who had this. I can’t imagine having this. I have Fibromyaglia and didn’t know PFD was common in people with Fibro. It really worries me. One girl who was on there had had sex before- a normal sex life and then one day during sexual intercourse, the spasms happened and she no longer had a normal sex life. I wouldn’t wish this on anyone. Everyone who has PFD, you are some really strong women!
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Julie says
It’s more common than most want to admit. Pain during sex, or even incontinence is not something that most of us talk about with our best friend, let alone want to bring up to the dr.