PCOS: My Testimonial

I do not make any claims to be a doctor, so all I am writing is stuff I have experienced or nuggets of information which I've collected along the way.

In 1998, I was diagnosed as having Poly Cystic Ovarian Syndrome (PCOS). I went to my osteopath after nearly a decade of suffering from symptoms which included: inability to lose weight, lethargy, depression, hirsuitism (excessive hair, including on the face), irregular menstruation, brown splotchy marks around my neck, underarms and between my legs. Some of the more clinical symptoms which I was unaware of include: hyper insulinemia (elevated insulin; "pre-diabetes" is the euphemism the medical field uses), elevated DHEA (hormone the adrenal glands put forth) and elevated testosterone.

Prior to this time, during the late 80s, I went to an endocrinologist to get to the root of my weight gain, which at the time was climbing at the rate of about 10-20 pounds each month for a good six months. After the first visit, this endo, "Dr. J.," put me (inaccurately) on Synthroid, for a perceived sluggish thyroid. Endocrinologists like this one should have his license revoked.

From what I have learned, PCOS is the leading cause of infertility in women in their 30s. It is not something which can be "cured," but it can be managed. You will never "get rid of it," it is in your DNA, much like the color of your hair or eyes. You can't change it. You can only change how you live your life or how you perceive it.

The first couple of endocrinologists I encountered have put me on an assortment of medications for my "Insulin Resistance" (which simply means the body doesn't effectively use insulin--whether it is over or under produced) to include: Glucophage, Glucophage XR, Avandia, and finally Actos. While on Glucophage or Glucophage XR, I suffered embarrassing, explosive gastric problems,** regardless of when I took my medication (whether I took it with food, without food or right before bed). There was not a day that went by that I did not have to worry about "containment issues" while sneezing or coughing too hard.

[ED: ** The bulk of the gastric distress, after many tests failed to turn up anything more conclusive than "a side effect" of the IR meds, I decided one weekend to try to eliminate my coffee consumption. I switched to similar amounts of (caffeinated) tea, and my distress all but disappeared. I now drink coffee every other day, and not nearly as much as I once had.]

I was eventually put on Avandia, which was nice for a while; however, the honeymoon soon ended. In winter 2001, I experienced severe abdominal pains, so severe I ended up in the ER. After much prodding and Xrays, they determined it was related to the three stones in my gall bladder (of which I never had troubles with, and haven't had problems since. I decided on my own to discontinue the Avandia, and *mysteriously* the abdominal pains disappeared for good.

When I moved to New York in 2001, I eventually changed endocrinologists. "Dr. N" as I'll call him, was yet another *pawn* in the Glucophage pharmaceutical enslavement policy and insisted on putting me back on Glucophage, this time the "XR" variety, insisting I'll have different results. Nothing changed with this variety Glucophage and after plenty of exams later, nothing changed; so I changed endocrinologists.

I then started seeing "Dr. H.", who insisted on putting me on something for my insulin, and I insisted I did not want Glucophage or Avandia, and telling him rather graphically why I did not want it. He then asked what I wanted and I suggested Actos. I was on Actos for nearly a year, with no real side effects to speak of; however, I was unable to lose weight and in nearly a year, my body did not menstruate. At the time, I was only 34, and in my eyes, too young to be in menopause or even that "pre" menopause.

No one seemed too interested or concerned in my lack of menstruation except me. I had undergone several (IMHO) demeaning clinical tests. When I started seeing "Dr. H.," he did a thorough physical exam on me, IMHO very invasive as it was the first time I had an endocrinologist interested in seeing my vulva and clitoris.

Later on I would suffer thru several Ultrasounds/Sonograms both trans and INTRA vaginal, to determine if there were problems within the uterus which prevented me from menstruating. My "stripe" was perfect, nice and thick, so there was no reason why Aunt Flow wasn't coming to town.

I have had a wide range of clinical blood work and other exams to rule out a "pheochromocytoma" (simply put a cyst on my adrenal gland/s). My DHEA at the highest was in the 1200 range; normal should be between 50-400). My cortisol was perfect; if it were excessively low or high it would indicate something wrong with the adrenals. I had a CAT done of my abdomen, again, perfect.

It's like looking for a needle in a haystack trying to decipher which of the hormones is driving my insulin to be too high.

I decided to go to a specialist in NYC whose bread and butter is PCOS and related syndromes. After taking perhaps the most THOROUGH medical history I've ever gone thru, and the vulva/clitoral exam again, I was sent home with a bunch of scrips for blood work to be done. The doctor praised me for having done my homework and having already put myself on a bunch of supplements to include: good multi vitamins, alpha lipoic acid, folic acid, grapeseed extract and milk thistle). He made the suggestion that going on an ACE inhibitor for my blood pressure would be better than what I was currently taking.

Back I went to "Dr. H.," who did not take the suggestion to change my blood pressure medication. He was too busy trying to use me for his next guinea pig experiment, this one was a dexamethasone suppression therapy, which means he injected me with some kind of steroid to stir up some kind of response with the adrenals. No response. Lord only knows what the end result will be on my body after all of these tests.

I went back to my osteopath in November 2003, and I asked him to put me on an ACE inhibitor, I suggested Accupril with an HCTZ diuretic, and asked him if after a month if it did not work for him to put me on Accupril and Spironolactone as a diuretic.

My PCP put me on a 12.5/25 dosage of Accuredic (which is Accupril & HCTZ combined), I experienced my first menstrual cycle in nearly a year. I am now taking 20/25 of Quinaretic (generic of Accuretic) and an evening pill of 20 of Quinipril (generic of Accupril). Two years later, I am still menstruating regularly, except for when I switched off Actos back to Metformin (Oct. 2005), as I would like to attempt to get pregnant.

As a result of the ACE inhibitor and having taken MYSELF off Actos, I have been on Atkins since April 2003, and I have dumped off close to 40 lbs (as of this date, 3/27/04), my blood pressure went from 150/90 to 120/70, and my cholesterol went from 204 to 180. I had an appointment scheduled for April 7, 2004, and will be undergoing a thorough physical exam. I should know with some level of certainty, if clinically, all of this has helped with my insulin resistance and other hormonal imbalances.

When I went to "Dr. H.," for the last time in February 2004, he did not seem too interested in my weight loss or the fact that my menstrual cycles resumed (to me that is an indicator that something hormonally is working right). And he sent me home with a two-month supply of Avandamet (a combo pill which contains both Glucophage and Avandia).

It was at that visit that I realized he did not seem too concerned with me and my health, and wanted to keep me a slave to the drug companies. To me, it is unacceptable to trade off one set of symptoms for an even more unpleasant set of side effects.

As of the 10th of November 2004, I went in for yet another series of ultra sounds, liver, pancreatic, kidney, heart, intra and trans vaginal. All looking for yet another needle in the haystack. It's got me concerned about what lies in store for me (ED note: In 2005 I was diagnosed with "fatty liver" syndrome, which is part and parcel of insulin resistance problems).

Going to check with my specialist about getting a copy of the pictures of my cystic ovaries so you can see what I'm dealing with.

Bad news tho! I weaned myself off a strict Atkins regimen (in 2004) because we thought I was sowing signs of gout (proteins won't flush out of my kidneys and I have a build up of uric acid). And the pain I was experiencing in my feet turned out not to be gout afterall. After a visit with an orthopedist confirmed I have two heel spurs on my left heel, one starting on my right, and the start of arthritis in one of my feet.

I am always seeking out as natural of remedies as I can, to be used concurrently with my prescriptions, both for blood pressure and insulin resistance control. If there is a homeopath or an aryuvedist out there reading this who can furnish more conclusive information on aryuvedic remedies (i.e. the benefits of Karela, "aka" Bitter Gourd/Bitter Melon), I invite them to leave a comment to this post.

I will be occasionally posting information or things I go thru related to my PCOS or other health issues to my Blog.

As of October 2005, my specialist put me back on Metformin, as I would like to attempt to conceive a child, and it is unknown the effects that Actos could potentially have on a fetus.

As of January 2006, I will be "jump starting" my system by going back on Atkins for several months, and eventually will wean myself back to a "lower glycemic" lifestyle. Living in America, as I do, "low glycemic" flies in the face of everything that's "convenient," or can be "eaten on the go." My mindset is one of an exercise in futility.