Re: a 30 year saga of PCOS
From: BAB (anonymous@obgyn.net)
Sun, 25 Mar 2001 09:31:47 -0600 (CST)
Hi Maggie,
You story has touched my heart so. It is an awful shame that you have
had to endure this throughout your whole life. Your story brought tears
to my eyes. Please know that you are in my prayers and I truly hope
that you will be able to end this nightmare with the proper doctor and
the proper treatments. Are you seeing a PCOS specialist? I sure hope
that you will check in to seeing one and I pray that he will be able to
help you. Are you on any medications at the present time?
I hope that you will be able to share your story to whomever will
listen. Your story could help so many women out there suffering. Thank
you so much for sharing your story here and I will ask that the Lord
will hold you in his loving arms and give you the peace of comfort you
deserve.
God Bless you Maggie.
--
BAB
At Sat, 24 Mar 2001, Maggie wrote:
>
>Hi..
>
>I stumbled onto the net today and was astonished to find how much is
>being discussed and thought about in regards to PolyCystic Ovarian
>Disease. I thought I would share this story, mostly to see it out there
>for others, but also because I feel it will somehow help myself in
>writing it.
>
>I am a 47 year old woman who was first diagnosised with PCOS almost 30
>years ago. The tale is very sad..so if you can't handle it, don't read
>on. The happy ending is who I am..but I am not cured in any physical
>sense from PCOS.
>
>I never had a *normal* menstrual cycle, began to menstruate at about 12.
>By the time I was 14, I was already dealing with facial hair, weight
>gain, and substantial hair loss. My mother took me to her internist,
>who decided that the problem was that I was overweight and if I lost
>weight, the menstrual irregularities would go away. I began a 4-year
>cycle of weight loss/weight regain that can only be described as the
>beginnings of a full fledge eating disorder that ruled my life for most
>of my 20's and 30's.
>
>At 18, I decided to confront the doctor I was seeing about the fact that
>I wasn't getting better and he agreed that the following summer, after I
>came home from college, he would put me into the hospital and run some
>tests.
>
>The summer of my 19th year, I entered a hospital for tests. For the
>first time I was given an internal exam (in typical uncaring fashion,
>the first internal that was done on me was done as a *lecture* with 5
>interns present). I was immediately told that one of my ovaries was the
>size of a grapefruit and that the other had multiple cysts. Surgery was
>scheduled and 1 and 3/4's of my ovaries were removed. I was pronounced
>*cured* and sent home.
>
>The menstrual difficulties did not go away. I would bleed sometimes for
>a month straight and then never have another period for 5 months. Again,
>in the summer of my 20th year, I returned to my doctor who sent me to an
>endocrinologist. He ran a bunch of tests on me and when I returned to
>college in the fall, I called and was told I had *no tumors on my
>adrenal or pituatary, and that I was going to be put on hormone therapy.
>I was in fact, put on steroids, something I was unaware of. In the 9
>months I was at college, I never again saw a dr, but I gained a lot of
>weight and became hysterical. I don't know how to describe it any other
>way, but I couldn't speak for days, cried for weeks and thought I was
>losing my mind. I saw the campus psychologist who was convinced I was
>on the edge of a nervous breakdown.
>
>When I returned home the summer of my 21st year, my family thought they
>might need to hospitalize me or else send me to Europe <g>. I went to
>my doctor and laid on the table. He rapped on my stomach which was hard
>as a rock and said..how long have you been swollen like this? I thought
>I had gained weight, but the truth is, the 1/4 ovary I had left grew a
>20 lb benign ovarian tumor in the nine months I was at school and on the
>steroids. I was so messed up, I ignored the months of pain that the
>tumor caused. Within a week, I had a complete hysterectomy. I was told
>I was *cured*, that my hair loss and facial hair problems and weight
>gain would go away.
>
>Nothing changed. The hair loss and weight problems continued. When I
>was 24 and on my own, I decided to go to the Lahey Clinic in Boston.
>There was the first time I heard the diagnosis of Polycystic Ovarian
>Disease or Stein-Levanthal, but there wasn't much in the way of
>treatment. I was on estrogen replacement therapy but found it caused my
>tesostorone levels to jump, increasing the rate of my hair loss..so I
>decided to go off estrogen and go through menopause at 24. I refuse to
>go on ert to this day, even though I have been told that the *new*
>estrogen with progesterone is different. I tried it for a brief period
>and found that my hair loss again got worse..so I went off it.
>
>In the years since, I have not had any success with the hair loss and at
>27 decided to do hair replacment alternatives...20 years ago..this was
>incredibly humiliating since the only places doing this catered to men.
>:( I was never a happy person with the results. Since there appears to
>be an increase in the number of women experience hair loss, I have
>recently found a system that I love and makes me almost feel like a
>normal person.
>
>In my 30's, my weight gain got out of hand and I found myself diagnosed
>as a border-line diabetic. I was able, through exercise and diet
>changes, to stay away from medications. By 40, I was hypertensive and I
>can't seem to change that no matter what I do. I am on medication. I've
>recently become aware of Syndrome X and have begun to understand the
>complexity of what has been happening in my body.
>
>I have been following a low-carb diet for a number of years, but have
>never been able to go into ketosis. So much for atkins ;) I try to stay
>balanced with food, finding that imbalance causes me to get into eating
>disorder mentality.
>
>I will not list the humiliation and the psychological impact of
>suffering from PCOS for 30 years. I will say that I have come to truely
>hate the medical profession for their dismissal of my symptoms for so
>many years. I used to wonder if this first Dr. had caught my problem
>at 14, if I would have had to suffer so much later on. Now, it seems,
>reading this literature, that he wouldn't have known what to do in any
>case. <sigh> Even today, with different holistic and alternative medice
>theories, I have not gotten any improvement. Perhaps there will be
>answers here that I am unaware of.
>
>I am thinking that if my story can help in getting more attention and
>research, then perhaps I need to come out of the closet with it. I
>really am on a very hectic schedule these days, so I would prefer not to
>have personal emails sent to me at this time. But I am willing to
>discuss my experience on this forum.
>
>The only thing I can say in conclusion is that although I have suffered
>greatly with all this, the experience of going through so much trauma
>has transformed me into a very wonderous and unusual person with a deep
>outlook on the meaning of life.
>
>--
>Many Blessings,
>
>Maggie
>
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