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Polycystic Ovary Syndrome (PCOS) Message Board


Polycystic Ovary Syndrome (PCOS) Board Index


Hi ladies,

I am a 42 year old woman. I have had facial hair all of my life. I am not talking just a little peel but serious facial hair on both my upper and lower lips, sides of my face, between the eyebrows and on the chin. About a year and a half ago they found a 7 cm cyst on my left ovary and over 18 months it grew to around 9 cms so I recently had to have my left ovary and tube removed through surgery.

According to my test results, my testosterone levels are normal as are my cortisol levels. I am going to have them retested now that I have been almost two years off the birth control pill just to see if perhaps the pill was controlling my testosterone levels and now it is back to the way I was (the pill is known to bind testosterone and make it unavailable to your body .. I had a very high bound testosterone and a normal free testosterone level). I did notice that while I was on the pill the hair growth was under control (I had most of it removed during high school through electrolysis) and now it is starting to crop up again.

I do not think that just because you get ovarian cysts that you are PCOS. Normally functioning women do get cysts on their ovaries every month. These burst open to release an egg into our fallopian tubes every month (ovulation). They are called follicular cysts (corpus luteum cysts after the eggs have been released) and are completely normal. However, abnormal ovarian cysts also exist and if you are concerned, get an ultrasound. Let me tell you that a doctor CANNOT feel a cyst if you are not extremely thin. I had had several pelvic exams done by a few different doctors and none of them felt my 8 cm cyst. I am not obese but I am, let's just say, not anorexic. Only the ultrasound will tell you for sure what you have going on in the ovaries. Try to go during your period for an external ultrasound. This is when they are the least likely to see those normal follicular cysts (which end up worrying you for nothing .. ie. is it a normal cyst ? or an abnormal one ? difficult to tell except perhaps by the size).

Keep in mind that PCOS is not the only thing that causes high levels of testosterone in the blood. There is also something called Non-Classic Congenital Adrenal Hyperplasia. This involves your adrenal glands which also produce hormones. The gold standard test for this is an ACTH-stimulation test with measurement of 17-hydroxyprogesterone at 60 minutes. If this test comes out positive then you can confirm the diagnosis with a CYP21-gene mutation analysis.

Non-classic congenital adrenal hyperplasia is believed to be the most frequent monogenic autosomal recessive disorder in man and many people go undiagnosed because in men, for example, the only symptom is facial acne and we usually don't worry too much about this (men with facial hair is no big deal, right ?). In women the main symptoms are hirsutism (facial hair), oligomennorrhoea (irregular periods) and acne. Keep in mind that the treatment for this is the use of glucocorticoids (steroids). I personally would not be willing to take these if I am confirmed with this condition (I am bringing this info to my next doctor's appointment to see if perhaps I can be tested ... just to know). Steroids have all sorts of side effects and I would rather control my hirsutism and acne (I also have this) using other methods.

Non classical Adrenal Hyperplasia is virtually indistinguishable from PCOS symptomatically so it is important to get tested and know exactly what you have. Your cortisol levels can actually test normal and you can still have NCAH .. aldosterone should also be tested (my doctor only tested me for cortisol levels at one point). NCAH is caused by a slight enzyme dysfunction and as a result you will have higher andogens in your blood (ie. testosterone).

I hope that I have helped to shed some light on another possibility. I think a lot of women are sent home being told that it is not PCOS and most doctors do not even know about NCAH. Classic Adrenal Hyperplasia is diagnosed at birth because it is a life threatening condition but non classic AH can go undiagnosed forever because there is only a slight imbalance. Doctors don't understand that even if we are not willing to pursue treatment (like myself), we would still like to know why we have certain symptoms. In my case, my periods are very regular and after 20 years on the pill, extremely light. I am fortunate in that respect.

Good luck to you and I hope you get the answers you are looking for. Don't freak out about cancer too much. You are extremely young and it is very unlikely that you have cancer. When I was diagnosed with my cyst, I too went through this. Don't waste your energy. Just get yourself tested and wait for the results to come in.

Take care and all the best.

Estria





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