What PCOS Has Done To Me

by Bren Hadjian

May, 2004

I remember the first time I had a period. I thought I was dying. I was 12 or 13 years old and woke up to a nasty mess. Mother explained to me that it was a normal process a woman goes through every month. I was going to live.

By the time I turned 14 they stopped all together. All through high school I was period-free. I mentioned to my step-mother that my monthlies stopped. She said I needed to see a doctor and that a doctor would probably put me on birth control to regulate my monthlies. She never took me to a doctor.

At 15 I brought it up with my father, telling him what my stepmother had said the summer before and that I needed to see a doctor. Still nothing. I left that home as soon as I turned 18.

I was into weightlifting, working out regularly at Hilltop (a gym). I was proud of my 5'5", 135 pound self. I thought I looked great. No one loved me like I did. I was strong, healthy and happy. I had nice legs, too.

Early 1987, I started having low abdominal pains while at the gym. Sharp pains to the left or right. Then I started gaining weight. I freaked out. I did not want to get fat. I worked out more. I still gained weight. The pains were horrible. I quit eating. It never occurred to me that it would be related to the fact I never had periods any more. The pains got pretty severe and a friend of mine talked me into seeking medical attention, fast.

I went to a clinic in Kansas City. During the first 3 visits I saw 5 different doctors and got 4 different diagnosis's. I was prescribed birth control pills and 1600 MG of Ibuprophen 3 times a day for pain. The Ibuprophen decimated my stomach. I was given Percocets for the pain. I kept gaining weight. Depression was becoming a problem. A laporoscopy was done and it was confirmed. I had Polycystic Ovarian Syndrome (PCOS). In 1987 & 1988 there was very little information about PCOS. I was told I would never get pregnant. My hormones are out of whack. I was told I needed to lose weight. I was losing the hair on top of my head but gaining it every where else. (Ninety percent of what I know now I learned from books, magazines and the internet.) I felt like a freak of nature. A beast.

I tried to lose the weight. The weight was extremely resistant. I gave up. I have tried every diet known to man. I tried diligently to get pregnant. I was an emotional wreck. After several years of taking BC pills, my periods stopped again. I went four years without one. One day out of the blue, I bled like a stuck hog. Forget the pads and tampons. I was using towels. It lasted only a couple of hours then quit. I didn't have another for several months. (As of this writing, it has been over three years since the last period.)

On my next annual exam, the doctor told me I was pregnant. You have got to be kidding me? He figured me to be two months along. I was elated. I went shopping. My husband at that time was not as thrilled as I was. This was a major hurdle for me. An ultrasound was done. I was happy. I was going to have that baby I was told I would never have. Shortly after my third month the doctor told me my body absorbed the baby. I called him a liar. I said it wasn't possible. How could my baby just disappear? I told myself I was never pregnant. I convinced myself I was never pregnant. I believed it for several years. I tried Clomid (a fertility drug). It did not work. I have begged many doctors, "If my stuff is not going to work, then get it out of me. I want a hysterectomy."  They kept telling me not until I have a baby, cancer or am older. This always enrages me. I cant have babies. I don't want cancer. I'd truly like to AVOID cancer! What does age matter? My stuff has not worked since I was 14 years old. Did PCOS take my age into consideration? No!

For years I stayed away from everyone who had or was having babies. I was insanely jealous of them. I am not as jealous now. Years has made me appreciate what I do have. My heart aches for the one I lost. I will be 37 here in a few days. Too old, I feel, to even try to have any baby. I have no sex drive left. I am no longer married. I dont want to date. PCOS has left me feeling like a short, fat, hairy he-she. A true freak of nature.

by Bren Hadjian

May, 2004

Where do I start? My back? Legs? Arms? Maybe my neck? The pain is all over. From head to toe. I have a myriad of symptoms that I have suffered with for years. I have complained about the pain so much nearly everyone I ever knew has walked away from me. Family and friends alike. Now I have tacked on loneliness to the many symptoms of my Fibromyalgia. Most can not relate to the kind of pain I endure day in and day out. No one wants to hear about it.

The pain started in September of 1997. I had a little slip and fall accident at work. I did not think it was anything serious. Until the next day. I called my building supervisor and asked him for the following day off so I could give my back a break. He ordered me to the Workers Comp Group. To this day, I feel my nightmare began there. The nightmare called Fibromyalgia.

I went as ordered. I did not want to. I truly felt I would be fine with some time off and rest. The first round of Workers Comp Doctors gave me a lifting restriction, which lead to three weeks off work, prescriptions for pain and muscle relaxers and diagnosed me with a back sprain. Cool. That is all I thought it was to begin with.

Time passes and the pain is getting worse. I can barely get around. I tell these Workers Comp doctors this. Days later I get a phone call from a contracted Nurse/Case Manager (French). I liked him until I met him. He set up an appointment for me with some very popular Orthopedic Surgeon. I'll call him Dr. P. Every two to three weeks this doctor was giving me different medications. Antidepressants. Anti-inflammatories. Nothing for the pain. Finally, after several months of this torture, an x-ray was ordered. Dr. P. came back and said I had Degenerative Disc Disease. He put in his little report that it was not caused by the injury from work.  It was pre-exsisting.

Meanwhile, new medications every visit. I kept getting sicker and sicker. I started having black outs. By August of 1998, I was so depressed and the pain was so intense I could not take it any more. I tried to end it.   I swallowed every pill I had in the house. OTCs and Prescription. I swallowed them all. Then I started vomiting. The vomiting seemed to last forever. My gut hurt. My head throbbed. My jaw ached. Weak and crying, I sat on the floor. This is how my boyfriend, at that time, found me.

I had to go on a medical leave from my job. I could no longer do the functions of that position. I found a part time job I could do. It gave me the freedom to move around or sit. I discovered Xenadrine RFA. It was a dietary supplement, with Ephedra. I started taking it and after a couple weeks I felt as though it really helped with my pain. I could move around. I was happier. I was even losing weight.  Later, I was told that Ephedra was not helping.  I still don't believe it.

My Workers Comp Case was forging on. I had to retain an attorney. I felt as though my Nurse/Case Manager and Dr. P. were screwing me around. The lawyer arranged for new doctor appointments and, eventually, a new case Nurse/Case Manager. .

Five doctors later and an agreement on diagnosis. Dr. F. told me that I had the back of a man in his 70s. Bear in mind, I was a 31-year-old, Caucasian Female. Back surgery was not recommended at that time. Dr. F. explained to me that I had Degenerative Disc Disease at the L4/L5 & L5/S1with Disc Bulging at the L5/S1. He went on to say that no amount of Physical therapy, Steroidal Injections and pain killers was going to alleviate the pain. He said I had reached maximum improvement. "It is as good as it is going to get."

I changed jobs again. I eventually quit the job I was injured at. I could no longer perform the physical aspects of the job. Depression got worse. I started having panic attacks. Finally, I had to make changes. I moved to Oregon. I tried to procure employment there. It was fruitless. I worked a few part time, temporary jobs, finally landing a temporary job at the post office as a Data Entry Clerk. That position ended after 6 months and I was retained as a Mail Handler. I swore I could do that job. By the end of the first night as Mail Handler my legs and feet hurt worse than ever. By the end of the first week I wanted to die. I made it 4 weeks before I was forced to quit. The swelling of my hands, legs and feet would not go away. I had to have help getting out of my van once I got back to the house. Embarrassingly enough, I even had to have help with toiletries. Here I was broke and depressed, in Oregon. I tried to make the best of it. I wound up coming back to Missouri.

The pain got worse in 2002. This was the worst pain I had ever experienced in my life. Or so I thought. I was experiencing short term memory problems. I was not functioning with a full deck of cards. I couldnt sleep. The shooting or stabbing pains would wake me every hour or two. I started having chest pains. I really believed I was having a heart attack and dying. I was hospitalized for 2 days with the chest pains, while medical personnel performed routine tests. My white blood cell count was high. Other than that they could find no reason for the chest pains. They decided it had to be acid reflux. I said, "No way!" I walked out of the hospital, against doctor's orders. I felt I was not being taken seriously.   Recently, I learned that NonCardiac Chest Pain is common in Fibromyalgia.

My DFS Case Manager set me up for doctor appointments for a disability rating. First I was sent to an Orthopedic Doctor, who said my complaints did not coincide with diagnosis. He suggested I see a Psychiatrist. Then I was sent to a Psychiatrist (which I thought was lame, as I was already seeing one.) The Psychiatrist said my problem was physical. So I did not qualify for disability.

During the Summer of 2003, temperatures hit above 100 degrees. The higher the temperatures, the more I swelled up. I went to the hospital three times because of the swelling alone. First my feet were swollen so bad it hurt to walk on them. Another time my legs and feet swelled. The third time I went I was swollen from the waist down. I was so swollen could not wear pants or shorts. No causes were ever found. The swelling was attributed to my weight.

Still unemployed. No money.  Homeless.  Depression at an all time high. My kids are keeping me going. They do not understand the severity of what is going on with me. I started keeping a pain journal. I recommend anyone suffering with chronic pain do this. My first pain journal was a simple calendar that I carried in my purse. I noted the days the pain was the worst. Believe me when I say, this will come in handy. I made notations of where the pain was and sometimes I tried to describe it. Describing pain, for me, is hard. I dont know much how to describe pain other than, "It Hurts!"  I am learning though. When dealing with doctors, it is imperative that you know the right adjectives to use when describing pain.

The headaches turned into horrible migraines. Some of the migraines would last five to seven days. No OTCs worked. I finally went to the clinic. I was given Fioricet, Relafen and something else (I cant remember what it was). None of it worked. I called the clinic back and told them my head hurt so bad that I was having black outs again. I was instructed to go in. I said I couldnt drive. I was, then, instructed to go in when I could.

I typed up a letter to the doctor explaining my history with the pain. It took a few days, due to memory problems, but I got it done. It was lengthy. I explained every detail I could remember. Every medical test performed and results. My sister-in-law had gotten some information on Chronic Fatigue Syndrome or CFS. I took my letter and the information to Dr. D. I explained to Dr. D. that I was in serious pain. I can't go on living like this. He was at a loss as to what to do. He arranged for me to start water physical therapy and prescribed me 60 MG Inderal LA (a blood pressure medication) to help with the headaches and migraines. I, also, got Stadol NS for the migraines. Stadol NS works great for me.  Because Stadol is so hard to get due to how addictive it supposedly is, I use it only if the migraines are at the utmost worse. I am proud to say, after two months on the Inderal, I have had one migraine and a few small headaches that didnt require any medications. Now if only I could find something that could help with the rest of the pain that runs rampant throughout my entire body.

A couple of days after that doctor visit, I was struck with a new pain. One I had never experienced before. It felt as if when I sat or laid down I had a garden hose tucked away in my left butt cheek and thigh. It hurt. Oh my goodness, did it ever hurt. After a couple days and nights of that and trying to call my doctor, with no success, I went to the Emergency Room. It was determined there that my sciatic nerve was being pinched and inflamed. I was told it was time to get my back re-evaluated for possible back surgery. I tried for three weeks to get a hold of my doctor, leaving several messages and getting no return calls. Even the pharmacy tried calling about refills and they, too, received no return calls. It was dismal. I had this garden hose thing going on for the entire three weeks of physical therapy. Along with a new pain.

During my second day of PT I had an asthma attack in the pool. The asthma attack led to a violent coughing spell that created, yet, another pain in my chest, right behind my right breast. It felt like muscle was being ripped inside me. It hurt to breath. It hurt to move. I could not lay down. I cried a lot. It hurt to raise my right arm just a few inches.

One woman told me to ask my doctor about Fibromyalgia. She said I acted a lot like her other Fibromyalgia patients. When I got home I got online and started my own research. I couldn't believe what I was reading. Never in my life did I expect to see something that accurately depicted what I have gone through over the last seven years. It brought tears to my eyes. I read about other peoples accounts of Fibromyalgia. The pain they, too, have suffered. One description I read was something I had said many times over the last seven years. I wake up in the mornings feeling like I have been run over by a Mack truck - twice. I burned up a lot of paper and ink printing Fibromyalgia information off.

I collected medical records from past doctors visits (which took three months to collect). At my next doctor visit with Dr. D. I produced all the information I had collected since the last visit. I gave him time to read my newest letter. When he was done I said, I have brought proof that I have been suffering severe, debilitating pain for the last seven years. Something has got to be done about it. I can't take it any more. He said he never doubted I was in pain. I told him of my Fibromyalgia research. I said to him, "This is the only thing I have found that accurately depicts what I have been going through these last seven years.'  He said to me that if I had to put a name on what was wrong with me it would probably be that. But he was not comfortable with it because Fibromyalgia can not be detected by blood or urine tests or x-rays. Fibromyalgia is diagnosed by ruling every other possible cause out. According to the medical records I brought with me to that visit, everything else had been ruled out. Dr. D. referred me to the Headache and Pain Center to have my back re-evaluated. The appointment was made for a couple days away.

I made it to the Headache and Pain Center. While there, I was attended to by a Dr. B. Dr. B. went over my medical history. I showed him my past reports from other doctors. He had me stand up. He grabbed my neck, "Ouch!"  He grabbed my elbows, knees, low back, "Ouch! Ouch! Ouch!"  He said you have tenderness at the tender points. I showed him my pain journal with my pain charts. He said you have Fibromyalgia and that I should have been referred to a rheumatologist. Dr. B. arranged for the upper and lower MRI's to re-evaluate my back.

Now I know why I hurt. I know there is no cure. What matters the most is it is no longer just all in my head. It is something that I will have to learn to live with. I will have to learn to function with. I suffered for 7 years before anyone could or would tell me what was wrong with me. The pain of Fibromyalgia affects everyone differently. Some people can still go on with their normal lives. Others are left writhing in the worst of pain. Suffering and often praying to die.

I don't want to die. I want to live.  Preferrably pain-free.

"Doctor, I need the BEST pain killer!"