A very private problem
by J.K., U.S.A. (1994)

I have had a form of sexual dysfunction for the past 20 years. I am unable to have intercourse due to vaginal burning, soreness, and tightness; any pressure or friction is painful. I also have generalized burning soreness of the skin and other mucosa (sore tongue and lips, my clothes hurt, etc.) but the vaginal problem has been the most disturbing to me.

I have tried many remedies without relief. I was given an acidic gel by one physician who felt it was a pH problem. Another gave me a topical steroid foam which made it worse. I have tried taking various oral vitamin/mineral supplements which also made it worse.

A clinical ecologist told me it might be due to allergic toxemia. (I also had depression, mental confusion, muscle aching, etc.) The treatment included prolonged fasting, bottled water, rotation diet of organic foods, and avoidance of chemicals. My symptoms worsened and the program triggered an eating disorder (anorexia) which left me debilitated.

Recently, I was given estrogen patches on the chance that premenopausal hormone deficiency might be contributing to the problem, but I was not able to tolerate the side effects long enough to see if it would help. I also tried Replens, an over-the-counter cream, which relieved the dryness but did not help the pain. My next plan is to try Vitamin E suppositories.

I have read of others with CMT who have burning feet and hands and I would be interested to know if anyone else has had my problem with generalized burning skin and mucosa. Since I don't really know what is causing it, I was wondering if it might somehow be related to the CMT.

Linda here - We've had several letters on J.K.'s problem, some of which follow.

From Thomas D. Bird, M.D. Chief, Neurology (VA Medical Center); Professor, Neurology and Medical Genetics (University of Washington Medical School)

J.K.'s problems sound fairly complex. First of all, she says she has CMT that has progressed to weakness of her upper extremities, shoulders and apparently neck. Because the other problems she describes later in her letter are not typical CMT, some attention should be paid to discovering exactly what form of CMT she has. Questions that should be asked are: Does she have a family history of CMT? Has she had EMG and nerve conduction studies? Has she had the DNA test for CMT 1A? Could she have some other form of neuromuscular disease?

She then relates symptoms of burning, soreness and drying of her skin and other mucosa including tongue, lips and vagina. She also mentions depression, mental confusion, and muscle aching. Obviously, these problems cannot be resolved by an exchange of letters. For the vaginal symptoms, she should consult a gynecologist. She might also want to see a dermatologist. Most important, she should consult a board certified internal medicine specialist to be certain that her various symptoms are not the result of a single underlying disease. Several different possibilities come to mind and they should be systematically evaluated by a specialist.

From Deborah J. Riester, M.D., Framingham, MA, U.S.A. I read the letter from J.K. and am not sure if I can help. I cannot make a diagnosis without more history and physical exam but these are my thoughts.

Vaginal soreness and burning is most often caused by vaginal infections and that should be checked and treated.

Another vaginal moisturizer (similar to Replens) is AstroGlide by Biofilm Inc. in Vista, California. Some people find that more useful.

If she is postmenopausal, estrogen or estrogen suppositories would help. If she is premenopausal, she could have side effects from estrogen. If she is perimenopausal, lower doses of estrogen might help.

One cause of dry mucous membranes is the SICCA syndrome which is in the "arthritis family."

Muscle aching can be caused by fibromyalgia which responds to antidepressant medication.

I think a good internist could sort this out. A gynecologist might be helpful for the vaginal problem. If she is feeling depressed, she would benefit from seeing a good psychologist.

From J.R., U.S.A. I would also like to respond to the "Very Private Problem" letter. I had a dry vagina which had lost its elasticity causing it to be painfully tight even to the pont of tearing during very careful intercourse. My doctor prescribed Premarin Vaginal Cream. It has been extremely effective and has brought back most of the elasticity and natural moisture and allows for pleasure in intercourse again. I am postmenopausal and chose not to take estrogen in any other form because I have had fibrocystic breast disease for many years. I did try estrogen patches for a brief period of time, following the cessation of my menstrual period, but it caused me to be depressed and moody and my skin reacted to the patches. I have not noticed any unpleasantness in association with the use of the Premarin cream. Perhaps J.K. could find relief from her unpleasant problem with the use of this cream. I hope it works for her if she should choose to have her doctor prescribe this medication.

From S.C., U.S.A. ....A couple of doctors wrote in with their comments [about J.K.'s condition] and I was extremely dismayed and concerned that neither of them mentioned the terms vestibulitis or vulvodynia.

I belong to an organization called the Interstitial Cystitis Association because, in addition to CMT, I suffer with a disabling inflammatory bladder condition. I am in the bathroom up to 40 times per day. This is a very long story and I won't go into it here but very often people with this bladder condition also develop vaginal, urethral problems with symptoms quite similar to J.K.'s. The Interstitial Cystitis Association is working closely with the Vulvar Pain Foundation and the Vulvar Pain Network to explore this problem.

J.K. needs to be aware that she should be seen not only by a gynecologist but also by a urologist. She might have an undiagnosed bladder condition underlying her vulvar pain.

The ICA is a nationwide support group and has received media coverage in every area. I, myself, appeared on The Today Show a few years ago with the group. We have gotten the National Institutes of Health (NIH) here in the U.S. to do the first ever bladder studies for women, even though this condition has been around for 100 years in medical literature.

The addresses for the groups mentioned above are as follows: The Vulvar Pain Foundation, Joanne J. Yount, Executive Director, 433 Ward Street ,Graham, NC 27253, U.S.A. The Interstitial Cystitis Assoc., P.O. Box 1553, Madison Square Station, New York, NY 10159-1553, U.S.A.

And from G.T., who said she was the woman written up in Good Housekeeping some time ago.

"I know the hell I went through," she said. "They couldn't figure it out. The pain was so bad I'd scream if my husband touched me. I finally found a woman gynecologist and all she had to do was touch a Q-tip to the crucial spots and I'd go through the roof, it hurt so bad. All the male doctors couldn't figure it out. I had vastibular adenitis -- a gland on the outside of the vulva that is for lubrication becomes infected and it can cause severe pain throughout the area."