Let’s Talk About Sex(ual Dysfunction in EDS), Baby

While talking about sex is a lot more fun than talking about sexual dysfunction, it’s a topic that I think is long overdue here at the Zebra Pit. Sexual dysfunction seems to get ignored like a red-headed step child in all the myriad problems associated with having an Ehlers-Danlos body, but pelvic floor dysfunction is in no way an uncommon occurrence for women with the diagnosis. We don’t talk about it much and I don’t know that it’s even been studied, but when incontinence is a regular admission of women over 40 with EDS, you know sexual dysfunction is also a thing and I want to break the silence around this subject. Thanks to the puritanical roots that many of us hail from, sex can be a taboo subject that’s still got a lot of shame and blame, ego and stigma attached to it: However if you suffer from pelvic floor dysfunction, it’s not your fault. Luckily, there are things you can do about it once you work up the courage to get the help you need.

First let me say if you’re one of those people who think you don’t deserve joy in your life because you are disabled, get that out of your head right now. Despite dealing with chronic illness, we all deserve to have a healthy sex life. It doesn’t matter what level of ability you’ve been able to maintain, whether or not you’re able to work, or how much you can contribute to the work of your household, you deserve to be loved and touched, even if it’s just by yourself at the moment. Sex is a powerful drive for every organism that requires it for reproduction and we humans are no exception. We may have overcome some of our basest animal instincts, but sex isn’t one of them.

There are a number of ways pelvic floor dysfunction can occur and childbirth is only one of them. Due to endometriosis and polycystic ovarian syndrome, I was never able to conceive or carry a child. I have always been a very sexually active adult and enjoyed a great sex life with my husband. Despite struggling with my weight and chronic pain my entire life, I was always quite active and worked out regularly once my jobs became more cerebral than manual. Unfortunately, those things didn’t matter much when a couple of discs herniated in my low back and I had to fight for nearly two years to get the surgery I needed. Those years were just the beginning of a long downward spiral in my health. As my health waned, so did my ability to orgasm. Things just didn’t feel the same and it was just the beginning of my problems.

Whenever I actually could achieve orgasm, it was usually painful, causing abdominal cramping that could last anywhere from a few minutes to a few hours. While some people use sex as a mode of pain relief (it releases endorphins which in turn relieves pain and improves mood), I was experiencing more pain. My husband felt terrible when this happened and internalized my inability to orgasm as a failure on his part. What was once a source of joy, creativity and bonding had become a major source of stress, pain and negativity. Even as I began to feel better in other ways, my sexual dysfunction increased and our desire to keep trying hit an all time low.

I complained to doctors, but as part of my long list of ailments, these complaints always got pushed to the bottom of the list until my gynecologist decided it could be endo related and why don’t we just go ahead and opt for hysterectomy? I agreed, given that I was having periods a couple times a year that lasted 30+ days and the cramping and PMDD that came with my periods lasted a whopping two weeks each month and was killing not only me, but everyone around me because of my inability to control my anxiety-triggered rage.

While my hysterectomy helped many things, it didn’t stop the pain I was having with orgasm or increase my ability to have an orgasm. In fact, I could feel even less. I worried that it was a nerve problem, as I have my fair share of neuropathic pain and other issues stemming from my deteriorating spine, but when tested, everything checked out fine. Despite this, I started to lose control of my bladder when I coughed or sneezed, and sometimes I couldn’t make it from the car to the bathroom during long rides.

I also started having difficulty telling whether or not I needed to have a bowel movement and sometimes got caught off guard when I had diarrhea. This was where I drew the line and finally insisted that my problems be investigated thoroughly. No way was I going to end up in depends at the age of 45.

My new GP luckily took this problem as seriously as I did when I described my symptoms. After ordering an MRI to rule out my progressive spinal deterioration as the cause, he referred me to a urogynecologist. Your doctor could do the reverse. I assume this depends on your own history and the nature of the onset. The nature of my onset actually looked like pelvic floor dysfunction, but with a history of spinal deterioration, he wanted to start there, especially since my MRI’s were pre-op and over 10 years old.

A couple of visits to the Urogynocologist and a month later, I am hopeful that I’ve finally found the right person to help me and that my problem really is pelvic floor dysfunction. He signed me up for pelvic floor therapy.

While I just had my first pelvic floor therapy session a few days ago, the doctor recommended I buy benwa balls, also known as pelvic floor therapy balls, so I could get started without delay. I purchased a set on Amazon that came with an instruction manual and got started right away. After just three short weeks of performing kegels daily both with and without the benwa balls, I’ve already seen some nice improvements. While I had tried kegels on my own prior to this, I didn’t do so with any regularity and I wasn’t doing them quite right, so I wasn’t getting the results I needed.

I’m not completely sold on whether the benwa balls are necessary for successful pelvic floor therapy, but they do have their benefits. First of all, if you’re a kegel novice and not sure you’re doing them right, inserting a therapy ball will help you to locate and target the correct muscles, your pubococcygeus (PC) muscle, which stretches from the pubic bone to the coccyx (tail bone). When inserted, you can easily feel when you contract your muscles, which may help give some a focal point to concentrate on, helping to ensure you’re actually targeting the right muscles. A benwa ball can also useful as a sexual aide during foreplay. With clitoral stimulation, you will experience a great deal more sensation and will likely be much more successful at orgasming with clitoral stimulation.

The set of therapy balls I bought also came with a therapy band and an exercise booklet that was somewhat helpful. I say somewhat helpful because frankly I’m a little wary of undergoing this type of therapy alone. It’s one thing if you have a healthy pelvic floor and want to do kegels to maintain that health, but there are different types of pelvic floor dysfunction and if you haven’t been properly evaluated, you may not be doing the best exercises for your condition, which could aggravate things further. It’s not uncommon for women to hold too much tension in their PC muscle and for it to become locked, for example. In that case, one would want to concentrate on somewhat different exercises as well as on relaxation techniques to get the muscles back to their usual working order. For me, the cramping I experience is caused by spasms and cramping of the PC muscle, which requires the use of relaxation techniques to calm and I have to be careful not to over-exercise the PC muscle with my therapy.

You may also need to strengthen muscles that work in concert with the PC muscle to be successful, as well. While the booklet provides a few exercise options, they may be too advanced for some and fail to address issues for others. These are all things a qualified pelvic floor therapist evaluates and coordinates during treatment to ensure you’re building muscle without causing any damage or set backs.

Like almost anything these days, I’m sure it would be easy enough to find directions on how to do kegels and other basic pelvic floor exercises online, however your best bet is to be evaluated by a health professional to ensure there aren’t any other issues causing your sexual dysfunction and/or incontinence. Given the scope and complexity of pelvic floor dysfunction, it’s also smartest to work with a qualified therapist to ensure you’re addressing all the issues that may be contributing to your problems. There are also a number of medications the doctor can prescribe to help with incontinence while you’re working to restore normal function.

Wondering what you can expect from Pelvic floor therapy? I was pretty nervous about it, so I decided to follow up this article with my experiences to put your worries to rest: Pelvic Floor Therapy; What to Expect

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