Hello everyone. I suppose I should introduce myself - I'm Bev from Nova Scotia, Canada. Happily married (2002) to a wonderful dear man from The Netherlands. We have no children (nor do we desire children), and 3 cats. I work as an office administrator at a local newspaper.
I was recently diagnosed with PCOS.
I've always been a healthy girl. Never sick. Always active and feeling well. Of course, I was never skinny - I'm a tall big-boned girl. But I was athletic and toned.
However, once I hit my mid-20's, I gained a lot of weight around my mid-section for no apparent reason. I started to suffer from fatique, bad migraines, mood swings, minor depression, cystic acne, extremely painful periods (and very heavy flow), along with major bloating. My weight shot up rather quickly with the majority of my extra weight painfully obvious by the "spare tire" around my tummy. I'm now about 70 lbs. over for my height (5'8.5"). I feel miserable.
I decided to make my first doctor visit EVER ...gives you an idea of how health I *was*.
Blood tests have shown that my triglycerides are high, and my thyroid is sluggish (borderline hypothyroid). I also have high-blood pressure. I had an ultrasound but it came back clear - no cysts.
My endocrinologist, a pencil thin somewhat ignorant man, also said I'm insulin resistant and merely suggested --> "Lose weight". Easier said than done. I've tried to, but it doesn't seem to want to come off. My GP prescribed Metformin, which I have been taking for about a month now (500mg x2/day). I find it helps me feel a little bit more energetic, but hasn't helped a great deal. I am trying to watch what I eat, and be more active, but the weight is hardly budging.
I stopped taking the BC pill about a year ago, due to the fact it was making me miserable. I have tried various kinds, but each made me more and more ill. I decided to go off them completely. Since then, however, I am dealing with more pronounced PCOS symptoms - excessive flow during periods, bad cramping and mood swings (my poor hubby) and cystic acne.
My doc is still convinced I have PCOS considering I have most of the symptoms. Not to mention, PCOS runs in my family.
My younger sister had it (had numerous cysts on her ovaries) but didn't have any of the symptoms besides excess hair growth. She has been on the pill and that seems to work fine for her. She just got an ultrasound a few months ago, and the doc said they're no longer there. My mother has PCOS, and was also diagnosed with a form of ovarian cancer a year ago, called peritoneal cancer. She underwent a total hysterectomy and 6 rounds of chemo. (She's doing alright now, although she lives with the fear that it may return at any given time.)
My gynecologist recently suggested I seriously consider having a total hysterectomy, or at least the removal of my ovaries, due to my PCOS and also the risk of cancer (as it runs in my family). I am serious considering it, especially since my husband and I do not wish to have a family.
I am thankful I have found this message board. You all seem to be wonderful individuals who are coping as best as you can under trying circumstances, and I am hoping to learn something from you all - keep up the great work ladies!
__________________ 'Diagnosed' with PCOS on a symptom basis (despite an 'all-clear' ultrasound).
Put on highest dose of Met for 2 years. No change. Symptoms worsening.
Doctor now suspects Cushing's Disease. In the throws of getting tests for a diagnosis.
Not TTC. Not on any BCP as I've tried many, and each made me ill.
__________________ 'Diagnosed' with PCOS on a symptom basis (despite an 'all-clear' ultrasound).
Put on highest dose of Met for 2 years. No change. Symptoms worsening.
Doctor now suspects Cushing's Disease. In the throws of getting tests for a diagnosis.
Not TTC. Not on any BCP as I've tried many, and each made me ill.
__________________ Monique(27) DH(31) Dx: PCOS-1999, Diabetes II-2005 Aiden James born 6/17/08 1 Angel Baby due to pPROM and Inc. Cervix (7/20/06) 1 Furbaby Brownie the Chihuahua
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__________________ 'Diagnosed' with PCOS on a symptom basis (despite an 'all-clear' ultrasound).
Put on highest dose of Met for 2 years. No change. Symptoms worsening.
Doctor now suspects Cushing's Disease. In the throws of getting tests for a diagnosis.
Not TTC. Not on any BCP as I've tried many, and each made me ill.
I wish I had good things to update about -- unfortunately I do not. But perhaps an answer is in sight...
About 5 years ago I was diagnosed - on a symptom basis - with PCOS and Insulin Resistance. I was put on various types of birthcontrol, to hopefully control my PCOS symptoms. All the types of pills I tried made me equally unwell - I went off them altogether. I was prescribed the highest dose of Metformin that my doctor gives out (1500mg/daily). Although it has helped clear up the horrid cystic acne I suffered with for a long time, it did little else other than mess up my GI tract. The day after I turned 32 this August, I received my first-ever ultrasound results: NO CYSTS on my ovaries! To quote my doctor your ovaries are pristine!
Worsening symptoms, despite doing everything to try to control my supposed-PCOS, has come to nothing. At this point, I feel worse than ever. And my most recent blood tests are shockingly poor; a far cry from the formerly vibrant and healthy person I was just 7 years ago. At this juncture, both my doctor and I believe PCOS is not causing my plethora of horrible symptoms that go beyond what someone with PCOS should have.
After much research, I have found almost ALL of my symptoms point to Cushings Disease - which would explain EVERYTHING. I had never heard of it till recently. You could say I look the part...large buffalo hump, and moonface, after gaining about 70 lbs. over the course of about 5-6 years (despite a restricted calorie diet, 1500mg Metformin daily, and exercise). Also the fatty liver, high BP, and poorly controlled diabetes. Though I've never been thin, I have never had weight problems before. Ive led an active healthy life and have never I stored any access weight in my mid-section, upper back or face/neck ...but that all changed about 6 years ago. My body has been transformed right before my eyes, and I no longer recognize myself. Ive been told many times by doctors and an "endiot" that I just need to lose weight and Ill feel better; but weight loss is nearly impossible, despite strictly following dietitians nutritional guidelines and exercising. I will lose 5 lbs. and the next week, for no apparent reason, those pounds will be back.
I recently received some of my blood tests results (although not all are in just yet). I was shocked to see I had developed a fatty liver, my cholesterol had worsened, my triglycerides have doubled since my last test in 2005. And I am now ...*drumroll*... officially diabetic. What!?!? I have been on Metformin - a diabetes drug - for 2 years, watched what I ate, and exercised. And I'm now diabetic! I can't believe it. My doctor is puzzled. To add to that, my list of symptoms has now lengthened to the following...
Extremely Heavy Menses - fibroid
Extreme Menstrual Pain
Buffalo hump Pronounced hump at the base of my neck. Tender and sore at times.
Central obesity I have gained approx. 70 pounds in 6 years, gaining weight for over 9 years, notably in my abdominal area, upper back, and face area without any explainable reason (no extreme changes to activity level or diet)
Hypertension Insulin Resistance despite high-dose Metformin use for 2 yrs.
Ultrasound denoted signs of Fatty Liver
Ultrasound showed no cysts on ovaries
Severe fatigue, weak muscles, lack of energy. Hollow empty feeling is how I can best describe it.
Cystic facial acne (especially along jaw line, chest, back and pubic area) have found that Metformin controls it.
Roundness/puffiness of the face around cheeks/neck. Some days swelling is not as noticeable, while other days are very noticeable. Cheeks very round and unusual fullness around upper neck.
Pink/purple stretch marks on the abdomen and upper hips/thighs and sides of breasts
Headaches. Rarely had them before (less than a couple times per year), but have been getting them more in the past 1-2 years. At least twice a week if not more. Ibuprofen is used to manage the pain.
Water retention and bloating so severe that I can gain 1-2 dress sizes in a day and lose it the next
Inability to lose weight
Elevated Triglycerides and Cholesterol
Decreased libido.
Increased Appetite controlled with Metformin
Flushing in chest area (bright red blotchy skin) even if cold
Mood swings/Irritability. Sometimes content. Sometimes screaming and violent (throwing things). Very irritable. Easily upset. Little things set me off. Overwhelmed by the life's daily requirements. Frustrated easily. Totally against character for me.
Occasional Blurry vision. There are times when I just cant see clearly out of my glasses or contacts. I blink a few times, and my vision returns in 1-2 minutes. Recent eye exam indicates vision has not changed significantly.
Increased sweating didnt sweat much up until this year, Im starting to notice a marked increase
Depression, anxiety, isolation. Easily overwhelmed by change and stress.
Locking finger requires brace a night to keep it straight and prevent it from locking in a bent position (started 2 years ago).
Swelling. Moderate swelling at times in my feet (ankles sometimes disappear)
Frequent urge to urinate at night almost always at 4 a.m.
Restless during sleep. Never feeling well-rested. More snoring in the past 2 years.
More facial hair under chin and eye brows than normal. No other hirsutism noted.
Darkening of skin between my upper thighs, arm pits, back of neck, under breasts
Bruising easily. Slow healing. Mosquito bites, cuts, and scrapes take longer to heal and bruises last longer.
Dry skin on arms and especially legs. Skin is extremely dry and scaly.
Skin thin and sensitive in areas
Thinning hair in areas (in the front)
Rash frequent small colorless bumps on backs of hands - no allergens known
Chronic Diarrhea
'Normal' thyroid panel (taken in 2005) despite symptoms of mental and physical sluggishness, heat sensitivity, cold intolerance (hands and feet), fatigue, brittle/weak fingernails, dark circles under eyes.
Low core body temperature
Susceptible to Infections: (esp. UTI and yeast infections) Weak immune system. Eye twitching, intermittent
I have noticed that a lot of these symptoms are casebook Cushing's. I confronted my GP about it recently. While he was initially insistent I had PCOS, he is seriously doubting his 'diagnosis' and now believes it is Cushing's.
He is shocked that the Metformin hasn't helped me control and prevent the diabetes I now have. He says this is a sign of a larger illness that must be causing it. Another symptom that really struck him is my low (actually, NO) libido. He says many PCOS patients have a high level of Testosterone, which contributes to a normal/high (read: better ) libido, while those with Cushing's have normal or low levels of Testosterone -- and as a result almost all Cushing's patients have little to no libido. (See this article.) I fall in the latter range, unfortunately. I also have the moonface, 'buffalo hump', and purple striae that are so common in Cushing's patients. I am currently in the process of getting tested. Cushing's is extremely hard to diagnose - so I have a long road ahead of me, but it is important and worth it to get this treated (it can be fatal if left to chance).
good luck and hope all works out for you!
thanks for listing all your symptoms like that, i think i may ask my doctor about it even though i dont have the "hump" on my back, i would like to get it ruled out if nothing else.
thank you again for sharing!
New and thankful to find this forum 
) libido, while those with Cushing's have normal or low levels of Testosterone -- and as a result almost all Cushing's patients have little to no libido. (See 
