Sex Problems and CMT
S.M. writes: I realize that discussing sex is a touchy subject for many but I would love to hear from others who may be experiencing similar symptoms. I am 27 years old and have lost all interest in sex. I have absolutely no physical urges to be sexual. I feel as though all erogenous zones have quit working (things that used to turn me on no longer even feel good). Though at times my mind might think sex sounds great, the body does not respond.

I blame much of the problem on the chronic fatigue (sleeping sounds much more enjoyable than sex…the urge is to lay down and rest, not to be sexual) but my husband suffers in the process. I do not find sex to be physically enjoyable; it is somewhat painful. I lack adequate lubrication and using artificial lubricants has not solved the problem. I am basically non-orgasmic; yeast infections and urinary tract infections seem to be a continuous concern when I am sexually active, and the legs seems weaker after sex, so anytime before actual bedtime becomes out of the question. I also feel that I can't afford to waste energy on sex because there's always so much I need to accomplish. I think the energy issue (along with the other symptoms) has made sex an emotional issue because there's too much to deal with.

I have questioned doctors concerning my problems. I've been told that I'm too young to have these problems. I've been told that maybe I need a new man even though I'm in a good marriage. I've been told that it has nothing to do with CMT. And, I've been told it's all in my head, so I went to therapy and realized that all the physical symptoms would naturally and normally cause the lack of interest. But this doesn't solve my problems.

I would like to know if others experience the same. Maybe we can make the correlation between the CMT and the sexual dysfunction and later inform our doctors.

Linda here – There is documentation on both nerve involvement in the genital area for women and impotence for men.

K.L. responds to S.M. I'd like to share an observation that my sister and I made a while back. We are in our mid-thirties and are mildly to moderately affected by CMT. We believe that we have never had an orgasm. Manipulation of the clitoris is more painful than it is enjoyable. Like S.M., our erogenous zones are virtually non-existent. Unlike S.M., we both still enjoy the idea of sex and manage to keep our husbands happy, although my husband complains about the lack of vaginal pressure. I think that muscles may have become weaker there as they have in my arms and legs. I hope this is of some help. I know it helps to hear about the experience of others.

Another response to S.M. from a reader who wishes anonymity: S.M. should know that sexual relations can still be wonderful without being orgasmic. As for the yeast and urinary tract infections, yeast infections can be transmitted back and forth between sexual partners if both are not treated. Men can have a yeast infection without symptoms. Some women's pH balance also is very sensitive and any change can cause an infection My doctor recommended I use a douche after intercourse, a mild as close to natural as possible, which has cut down on my infections. Also all products I use for birth control have to be as natural as possible.

Also, as S.M., my legs are almost useless after sexual relations. I also get severe leg and hip cramps. My partner is very understanding, stops when this occurs and rubs the cramp, which is very nice since it's a form of foreplay. There have been plenty of times that we weren't able to continue, which my partner accepts, plus, after a night of sexual relations, my partner always lets me sleep in. Sex is always a planned activity for us. Yes, it takes the excitement out of it somewhat but it enables us to still show our love and affection for each other. Different positions may also be helpful.

Things no doctor asks
Linda asks Dr. Gareth Parry, Neurologist, Auckland Hospital, Profesor of Neurology, University of Minnesota: One woman would like to know (and I imagine a lot of others who are afraid to ask) if CMT can affect your ability to have an orgasm. I've heard from a handful of women who cannot reach orgasm. I spoke to my gynecologist and she said it can be part of a neuromuscular disease. Could you think about that one for a minute please.

Dr. Parry answers: It does make a certain amount of sense. Every part of the body receives a nerve supply and orgasm requires an adequate nerve supply to the vaginal region. We have not recognized failure of orgasm as being part of CMT but it is perhaps because we haven't specifically asked. Like male impotence, it is so common in the general community that it would take a specific research project to get an answer.

Linda here - There are a lot of things that no one has questioned in CMT people. Problems like erection difficulties, inability to have an orgasm, constipation, diarrhea, and stomach upsets (reflux). All of these things are so common in the general population that no one really thinks of them as being part of CMT but they could be. Let's hope someday, someone, takes an interest in them and we have medical journal articles written on the topics.