An excerpt from Beyond Embarrassment, reclaiming your life with neurogenic bladder and bowel.

Conceivably one of the areas of life most affected by neurogenic bladder is sexual intimacy. When I was first diagnosed, I was afraid to have sex. Because I was new to using a catheter, I was sore in that area anyway. The last thing I wanted was any more activity that would irritate already inflamed tissue. And cathing was not like using a tampon during a menstrual period. It did not intrude on five days a month. It happened several times a day, every single day, stretching out into eternity.

The truth is I was losing my sense of identity. I’d always thought of myself as a healthy, active, sexy wife. But feeling sexy when I was in pain and struggling to get used to catheterizing myself was more than I could handle most days. It took all I had to paste on a smile and tell myself, “You are sexy!”

Sometimes I wondered if the diagnosis of neurogenic bladder and bowel would ultimately change my marital relationship. Would this disease affect my nerves to the point where I never experienced the bells and whistles of orgasm again? When would the next shoe drop? What would I lose next? Would I lose the ability to weep with pleasure?

When my husband got that sparkle in his eye, I wanted to cry. I felt broken and already used. Perhaps I felt raped by the stupid catheters. I did not want to traumatize myself further.

Bladder infections were the bane of my existence, and I wanted to avoid them at all costs. So much medical advice stressed that people who got frequent bladder infections should urinate after intercourse to flush any bacteria out of the urogenital cavity. Well, what if I had to catheterize myself? How did that help? Would sex make things worse?
I was too shy to discuss these issues with my doctor, something that would have ultimately made this transition much easier for me. I did not want to draw attention to my concerns regarding sex and my sexuality. Maybe, on some level, I hoped that, if I did not talk about my personal health issues, even with my husband, I would figure it out on my own, or they would just disappear. Of course, I did not, and they did not, either. So instead, for too long, I lived alone with my fears and questions.

The thought of getting a bladder infection from having sex caused me to shut down. Instead of being pouty because of the rejection, my husband patiently — and I cannot emphasize enough how patiently — pressed on. I was so afraid of getting sicker. I felt like saying, “I already gave at the office, so leave me alone.” It was the worst sort of mind game.

Fortunately, my husband and I were able to trust each other about this, too. Because of his loving nature and openness to my concerns, he helped me to express my fears and be honest about what I needed from him in order to be comfortable having sex. We discussed issues of hygiene that are so important when dealing with neurogenic bladder. We talked about how almost constant pelvic pain made it more difficult to find that sweet spot and how it might take longer to warm up. In addition, I realized that I needed to be careful about overthinking issues. If I allowed fear to control me, I might be alive, but I would not be living.

The pleasures of sex are a wonder, but we should consider some rules of thumb when dealing with damaged and paralyzed parts. These suggestions are based on my personal experience and conversations with my doctors, and I encourage you to discuss these issues with your urologist or, if you feel more comfortable, with your gynecologist so you can benefit from her expertise and knowledge of your individual medical issues and concerns. If it would be helpful, your doctor could recommend a sex therapist to help you and your partner “work around” the physical challenges that your condition creates. Therapists can also help us deal with fear and other emotions that may keep us from enjoying sex.

Some positions are less problematic with regard to comfort and contamination of the urethra from exposure to the penis and sperm.

Feces are filled with bad bacteria, so think twice before using some creative positions. Saliva is likewise filled with bacteria. If a particular technique introduces any chance of getting a bit of feces or saliva near the urethra, where it can move into the bladder, then watch out: a bladder infection is very likely to happen.

Procedures for sterile catheterization must be maintained. Because an intermittent catheter pushes through the tube of the urethra and up to the neck of the bladder, it could inadvertently cause infection, especially if any bacteria are either near the urethra or clinging to the catheter. To further protect from infection, take a shower or use your peri bottle to cleanse following any sexual activity and before you even consider using your sterile catheter.

Don’t assume that pain eliminates the possibility of intimacy. All situations are different, and we experience pain on different levels. At times, pain is so great that it’s an absolute block to anything more than perhaps being held gently. And no one should ever feel forced to do something that causes or increases pain. But sometimes working through the pain can produce positive results. In some ways, sex might be like running a marathon. It can be hard to start. It is easy to overthink all the obstacles that may appear and be tempted to quit at the first sign of a problem. However, as a couple patiently persists, the body begins to feel relaxation and pleasure, and the pain begins to subside. In the end, the endorphins and positive feelings make you feel so happy that you ran the race.

JoAnne Lake is the author of Beyond Embarrassment, reclaiming your life with neurogenic bladder and bowel.

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