Sometimes I get questions that make me feel emotional. This one did because I was invited to consider her very private confession, one that affects so many of us. I cried because she wondered about her “self worth”. The journey we travel is hard; I will not lie to you. Like the fighters we are, we must continue to believe we have purpose and carry on. We can’t give up on ourselves or the people we love.
Question From Reader
I am a 47-year-old woman who has Multiple Sclerosis (MS). I have been struggling to self-catheterize for three years, now. I have had good nurses who have taught me how to do the procedure. I just find it mentally so tough to do. It has affected my sex life with my husband and my personal feelings of self worth. What is wrong with me?
Thank-you so much for sharing such raw personal feelings and concerns with me. I, too, have had similar doubts and concerns, such as how my spouse and I would continue in our marital life, especially during moments of intimacy, with my new adjusted normal, equipment and all. I think I said it best in my book, already. So, I will share an excerpt with you. This section from the book might help you to see/understand that you are absolutely not alone. You AND your spouse most certainly have an adjustment, but, one that is well worth the effort.
From the book, 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.
This particular excerpt comes from the first part of my book-chapter that covers sexual intimacy. There is so much more I have to say on the topic. I encourage you to read the entire chapter: contact your local library to check-out the book or ebook or have them borrow a copy for you.
The bottom line I want you to know is that “No, you are not unusual”. Everyone of us who has started daily catheterization has a lot of new issues they’re struggling with and I can imagine how many additional concerns you have with your MS diagnosis. I want to encourage you and also challenge you! You have to assume the role of a soldier, one who fights for your husband and marriage. Sometimes this situation seems bigger than we, are but please remember that communication is Key. Try your best to be sexy; have Faith. Start by being open to lovemaking and take it slow. You are more than your broken body; you are beautiful and sexy: a vital young flower. Remember it all starts with that first step.
Please write back and let me know how it goes.