Women should know
by C.C. Canada (February 1995)

After taking an antibiotic in May 1994 for bronchitis, I started to experience itchiness and burning sensation around the vulva. I was prescribed seven different creams, over a period of four months, for fungal infection (usual side effects of antibiotics) plus an antifungal pill that is prescribed to AIDS patients (Fluconazole) without any results. After all these treatments that lasted from June to September, I was told by my GP that I had recurrent vaginitis and needed to see a specialist. I finally got an appointment for the beginning of December. This gynecologist cancelled all December appointments and I was rescheduled for the end of January. I couldn't see myself waiting so long and suffering all this time.

In the meantime, I tried everything in the book in terms of "natural medicine" (useful methods in case of a "real yeast infection"); went through the very tough antifungal diet "MEVY" (meat, eggs, green vegetables and plain yogurt) for a month and no wheat products for three months; homeopathy for two months while on MEVY; acupuncture while on homeopathy and MEVY what I call putting all the chances on your side; Golden Seal treatment for two weeks after obtaining no result from anything else; the "caprylic acid-lactobacillus bifidus-psyllium-bentonite: treatment that is so awful to take I will not describe it to you; the "taheebo tea" douches.
As you can see, I'm not the passive type of patient waiting for a medical guru to tell me what to do but, this time, it was way beyond me.

I finally saw a gynecologist for what my GP was unsuccessfully treating me for the last six months, recurrent vaginitis. Well, after more than $500 worth of creams and different treatments, from homeopathy to "the Yeast Syndrome Diet", he told me that I probably never had any yeast infection since all my lab tests were negative. According to him, I'm suffering from vestibulitis (of the vulva).The cause is unknown but it appears that women who react to certain antibiotics (which is my case for penicillin and amitriptyline), pre-menopausal women and others could have vestibulitis. It is the thinning of the vaginal walls at the entrance (vestibule) that is the culprit. The walls being thinner, the veins are ore exposed and break easily. As a result, it burns and itches as if one had an infection. It can go undiagnosed, or diagnosed as a yeast infection, for years, which makes the use of all these expensive creams not only useless but painful. They can also aggravate the situation by keeping the area constantly irritated.

The remedy is simple and quite rapid. Conjugated estrogens (Premarin) are used at night intravaginally to thicken the vaginal walls. The normal dose is 5 grams a day, but after I told him how sensitive to medication I was, he went down to 2 grams. After two days of trying that dose, and suffering from mild migraines and dizziness, I went down to 1 gram a day. It seems to work well for me since the side effects are gone, as well as the pain and burning sensation I've been having for the last six months. He also prescribed a cream Hydrocortisone, to be applied topically three times a day. I do it twice a day.

The doctor said that he could not link vestibulitis to CMT but often sees vein problems arise when there is weakness of the muscles (diverticulosis, hemorrhoids, varicose veins, etc.). Could this be the new illness of the ‘90s!

Following is an October 1996 update from C.C.:

Finally - the right doctor and a cure
I'm feeling much better than last year. I've meant to inform you of the new development in what I call my ‘vestibulitis saga.' If you remember, I was having problems with my vagina (burning sensation as if I was sitting on acid), my anus (bleeding hemorrhoids) as well as my mouth (I had almost constant mouth ulcers).

Doctor #1 said it was vaginitis and prescribed seven different creams over a period of three months, even if the yeast tests were always negative. She then sent me to se a gynecologist, but since I could only have an appointment six months later, I went to our local university clinic and saw doctor #2 who sent me to a gynecologist. This one thought it could be caused by a different sexually transmitted disease and had a series of tests performed. All of them came back negative (I've been with the same partner for the last 16 years but he did not want to take any chance!). He then said I was suffering from vestibulitis and prescribed estrogen and cortisone. When I questioned the side effects of that deadly cocktail, he reminded me that he was a specialist, and if I did not want to follow his advice, I would have to find another doctor, which I did.

Last January, after 19 months of pain (sometimes excruciating) and frustrations, I finally found Dr. Faraci, a gynecologist here in Ottawa, who is secure/confident enough with herself to listen to her patients and even to accept their suggestions/leads. The fact that I had all the symptoms of menopause at 38 (which is not abnormal but unusual given my mother started hers at 53 and my five older sisters, aged 40 to 51, were still as regular as a clock) made me wonder if CMT could be involved somehow. My theory was related to two hormones and LH (I can't remember exactly what it stands for, and since I lost all my medical related books and notes in the flood of August 8…yes, we had 27" of sewer water in our basement…I cannot be more precise for the time being).

Dr. Faraci performed a series of tests (many of which were done to eliminate other possible causes or other illnesses that could mimic the same symptoms) and came to the conclusion that, given the very low level of these two hormones in my body, my hypothalamus is probably affected by CMT. Since these hormones are sent through nerve conductivity to the ovaries to produce estrogen and progesterone, the ovaries stopped producing these hormones which explained why I was starting my menopause so strongly and so young and why the membranes of my vagina, anus and mouth were so dry, cracking, burning, etc., and why I was always so tired. It is called ‘hypogonadism' and is controlled with HRT (hormone replacement therapy). I take a minimal dose of estrogen for 31 days (a month) and of progesterone 10 days a month. I had a few side effects at first (headaches, nausea, feeling down). Except for four days a month (few side effects like PMS), I now feel like ‘new' (or almost, I'm now 41 after all!).
I'm sure I'm not the first nor the only one who had to go through all this ordeal before finding the right doctor, the right diagnosis and the right solutions.

In February 1997 C.C. wrote:
Well, my never-ending saga has a new twist. In my last note to you, I was talking about a few side effects (PMS-like symptoms) caused by progesterone. They since have amplified to a point that I had to return to see Dr. Faraci. As usual, she was very pleasant and listened to me and the symptoms I was reporting.

When she first put me on progesterone in January '96, she prescribed them for seven days a month (day 16 to 22) and gave me a repeat for three months. To renew them, and for the follow-up, I had to go back to my GP. My GP told me that they were to be taken for 10 and not seven days (day 16 to 25). I read the Information for the Prometrium Consumer document attached to the pill container and it was written that I had to take them for 14 days. I accepted what the GP said and went on to take them for 10 days. What a mistake! Starting day five of the second month, I started to experience all kinds of symptoms, like breast pain, nausea, dizziness, fatigue, headaches and depressive mood. I looked yellow whenever I was looking at myself in the mirror but did not pay much attention to it.

When I saw her in the summer for a renewal of my prescription I talked to her about these symptoms. She said that these symptoms were related to the fact that I was depressed and referred me instead to a psychiatrist. I had the power to refuse but instead I agreed with her diagnosis since I was crying more often than usual, I was more tired than usual, etc. I'm so glad I did go. I'm also glad that I'm continuing to give myself the gift of psychotherapy. I see my psychiatrist every two weeks. From day one, I made it clear to him that I was not to take any mood altering pills and he's never insisted on pushing one on me since. This therapy allows me to vent my feelings (positive and negative) related to CMT and its numerous grieving steps that we all have to go through since it is an evolving illness. It also gives a break to my very supportive husband, who sometimes has more than his share of the consequences of CMT, and to my friends and family.

When I saw my GP for my annual checkup, my cholesterol tests came back completely out of whack. My LDL (bad cholesterol) has always been on the high side of the normal scale, but this time not only was it much higher but my HDL (good cholesterol,) which is usually very high, came back very low. According to her, I had no choice but to take a medication to lower it. I was in her office to talk about side effects of my progesterone and the only thing she could do was to prescribe me another pill. I was so depressed and annoyed when I heard her talk so nonchalantly about another pill to take for the rest of my life I literally cried in front of her (it was also day six of my Prometrium). I asked her to look at the broad picture instead of her usual way (and most GPs' way) of a symptom, a pill…another symptom, another pill. She said that I had no choice. Useless to say how furious I was when I left her office.

In hindsight, I realize I was crying more out of anger and powerlessness than out of sadness. To top it off, she said that according to the manufacturer, Prometrium should be taken 14 days. She also mentioned that since I had so many side effects with it, I should consider having my uterus and my ovaries removed. If we had to remove every part of our body every time we encounter a problem, I know one head that should come out soon, and it is not mine!
As usual, I allowed myself to have a good cry and two minutes of self-pitying. I then dried my tears and went to do some research on how to lower my cholesterol level naturally. While I was at it, I also checked the side effects of the medication Mevacor, which are nausea, diarrhea, muscle cramps and myalgia, muscle pain and myopathy, dizziness, headaches, blurred vision; there was even a case of peripheral neuropathy that has been reported. I knew I couldn't do much in terms of cutting down of fats, but, for the time being, I have decided to eliminate all red meat, eggs and sea foods from my diet, take homeopathic medicine and some nutritional supplements.

When I saw Dr. Faraci, I mentioned my symptoms. As soon as I said the words "my skin looks yellow," her diagnosis was out and clear…my liver, which is already weak, is supposed to process the progesterone but it is not doing its job. This explains why the symptoms that were minor at first became worse every month. She immediately ordered a lab test for my liver, thyroid gland, etc. I also mentioned to her the result of my research that related high cholesterol level to HRT. She confirmed my doubts…my HDL was lowered and LDL increased as a consequence of taking some progesterone, which is a common side effect of that hormone.
I can't believe that we are so much at the mercy of these GPs and their habit of making all these hard drugs so readily available without looking at the broad picture, the family history, the existing illnesses, etc. Can you imagine the consequences of having taken that Mevacor. One case of peripheral neuropathy is one too many for me, thank you. And what about blurred vision when I'm already suffering from retinitis pigmentosa. It's bad enough that I don't have any lateral vision, what's left could have been blurred. Yes, I know what you will jokingly say to me…another symptom, another pill!

According to Dr. Faraci, progesterone is not for me. I will continue to take the estrogen and she will monitor my uterus and ovaries every six months. Besides the annual pap test, she will perform regular ultrasounds. According to what I read -- and she gave me the same statistics -- one woman in 100 has a chance to have uterus or ovarian cancer by the time she reaches the age of 80. With progesterone and estrogen, this figure remains the same but it jumps to six to eight per 100 when the woman takes estrogen alone. At 41, I prefer to take that risk that I still consider minimal, knowing that I will be closely monitored, rather than worsening my already weak liver. As she said, it is much easier to remove a uterus and ovaries than to replace a liver.
I hope this information will shed some light on this issue and help others in making a decision. When I have results on my cholesterol level that I am trying to reduce naturally, I will let you know and will give you a detailed information on what I take. I have a feeling that I am using an automatic weapon to kill a fly but I still believe in the saying "better be safe than sorry" when it comes to my health.