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Brenda B (BeBop), PCOS Bio

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I recently read an article in the NY Times magazine about Cushings, and a light bulb went off. I have an appt with an endocrinologist in March, but I’ve been to a renowned large clinic near my home in the early 1990s and was diagnosed with PCOS yet had no cysts on ovaries. I had abdominal striae, rapid wt gain in belly only, facial hair. They also found I had hypertriglyceridema – 1000+ when fasting. They could not put me on estrogen for the PCOS because of the lipid disorder, which they figured was genetic tho I never had any tests to find out why. So I went on Lopid, went on to grad school, shaved and plucked, wondered when the period would come.

I’m 53 now, got married in the mid 90s and we tried for years to have children, finally got pregnant in late 1998 and had a son in 99. Then I got hit with a terrible insomnia, sweating and anxiety and was treated for post partum depression. I did not feel depressed, just could not sleep despite my 9.9 baby sleeping through the night almost immediately. Didn’t sleep the two nights I was in the hospital after delivery. I stopped breastfeeding at 3 weeks and began a tragi-comedy of errors of regular health/mental health treatment, finally Zoloft did the trick as well as Valerian root instead of Ambien (which never worked for me) for sleep. The toughest point was when I hadn’t slept at all for 3 days. But that is another story. Anyway to make this already bad story worse, at 4 months postpartum, my mom died of stage 4 leiomyosarcoma, which she’d had in 1995 in her leg and it had metasticized to her lungs. She was a tough old bird and I think maybe had Cushings come to think back. (And thinking of my family history there may be something there with genetics, ie., MEN, with a sister with uterine fibroids, and two brothers with neurofibroma on their foreheads that were removed). Anyway, she refused all medical treatment after the leg surgery and elected to only have radiation in the leg area and never went to get checked out after that.

My son is now 14 and I’m apparently in menopause. I’ve had the return of the awful insomnia and the rapid heart rate at night. So I’m  back on Zoloft and valerian root immediately and made this endo appt today after reading about cushings here for two weeks.  My other conditions are hypertriglyceridemia (never determined if primary or secondary) for which I take Lovaza and Niacin and it’s down to about 300-400, which is not good. I tried Pravastatin but makes my muscle aches and constantnback aches worse.

In 2005 I had a terrible loose cough that the renowned clinic diagnosed as GERD after being misdiagnosed as asthma for 2 years by the community clinic. I can’t tolerate steroids as they make me an angry insomniac but took them as prescribed when they thought it was asthma. The big clinic diagnosed that as GERD (aciphex immediately worked on the cough) and I was also found to have NAFL (fatty liver), an enlarged spleen, and stil the high triglycerides.

In 2011 I had an uterine polyp (removed) and endometrial hyperplasia for which I get checked every year because I don’t want to/can’t take the progesterone. I would really prefer a hysterectomy to end that but obgyn is reluctant.

This year I’ve had a number of new symptoms: lactose intolerance, all over tendinitis (phy ther prescribed), incontinence and needing to go alot, leg and feet cramps, horrible back aches (member at the massage place), super fatique and muscle weakness (couldn’t even snap down the buckle on my ski boots last weekend and only lasted a couple of hours on the hill, and I love to ski) and blurred vision, eipscleris and early cataracts. I also have suffered from what is diagnosed as vasomotor rhinitis for YEARS, I keep lotion tissue companies in business. It’s been so bad this winter that I went to the doctor this week and was prescribed a steroid. Then I didn’t sleep last night. Oh and if I drink alcohol I get the same rapid heart beat and insomnia too, to add insult to injury. I still have the facial hair despite oh maybe a dozen laser treatments.

Oh, and since my 20s when this all started I’ve always considered myself “round shouldered” which looks to be a buffalo hump. :0

In reading all these stories I am worried that I’ve had Cushings my *entire* life not unlike some other folks here. I don’t trust doctors all that much becuase I had so a horrible time with “postpartum depression” treatrment. I was so angry after that that I spent several years on the board of a women’s reproductive mental health organization fighting to get the Melanie Stokes Act passed. I am too old and tired to do advocacy again but thanks for doing it and being here. I am reading about all you folk fighting for a diagnosis and I fear that I’ll be in the same boat. God bless you and hugs for all. Hang in there. I have. Sometimes barely.

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Claire (helaana55555), Adrenal Bio

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I am a 32 year old female that recently had (two weeks ago) my left adreanal gland removed

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Kelly Jo, Pituitary Bio

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I was first diagnosed with Cushings Disease in the fall of 2007 after having broke my hip (just by stumping my toe – no fall) and then deleveloping a PE which landed me in the ICU for 5 days.  And I thank God that these things happend to me because I was rushed to Parkland / UTSW and it was there that the dr started questioning why a 39 year old woman would break her hip in the manner that I did.  No other dr questioned this (I had even broked 2 ribs and was told that I must have been laying on the couch funny – WHAT?!?!).

I had been told for years by my dr that I was just obese and needed to diet – IT WAS EASY, he said.  (This is the same dr after he found out was I was diagnosed with said – I could have treated you for that Endo is my speciality.  Again – WHAT?!?!?)

It took the drs at UTSW about 5 / 10 minutes to look at me and say “We think you have Cushings”.  I had never heard of this before and can remember just asking can it be cured?  And being told about 70 to 80% of the time.

They still had to test me and that took a few months.  They all came back with results that I had Cushings and they found a tumor on my pituitary.

I had to wait a few months before I could have surgery due to I was on blood thinner to treat my PE / blood clots.  I had my first surgery in February 2008.  Drs said it went well and I should start seeing things go back to normal and that I should also start feeling better.  Well I never really did and it came back and I had another surgery January 2011.

And now they think it’s back yet again!  I’m mentally and physically done with this disease!  I just want them to take everything out of me that would make this horrible disease stay away!  I’m very emotional right now and feel completely lost and alone.

I have a great husband (can’t tell you how great he has been) and family that has stood by me the entire time and will always be there for me but as I’m sure a lot of you know sometimes you just want to ‘not be’.

With this go around I’m really struggling.  The first time I was almost cheerful cause I finaly knew why I felt so bad and worthless (I had had this disease for probably 10 years before I was diagnosed).  The second time, I was a little more bummed about it and this time I’m more depressed than I’ve ever been.  I know I’ll get thru this (again) but I’m tired of having to deal with it.

And I know I’m rambling but I’m feeling the need to let this all out.  I could go on and on but I think most of you know how I feel.

Thanks for having this site and for allowing me a place to go to vent.

Good luck to us all!

Kelly Jo

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