Christy's PCOS Story

Christy's PCOS Story

[ Update: December 28, 1999 | Update: March 25, 2000 ]
[ Update: April 4, 2000 | Update: May 9, 2000 ]

[ Update: August 8, 2000 ]

I was diagnosed with PCOS (Polycystic Ovarian Syndrome, or Stein-Leventhal Syndrome) on October 8, 1999. Here is my story… let’s travel waaaay back in time…

In July of 1998 I was scheduled for my Depo Provera shot, which I decided to forego, thinking that now was the time to start trying for a baby, much to my husband’s delight! I knew that the Depo screwed up my system because I didn’t get a period until November 1998 (three months later). I had called the Planned Parenthood, where I was getting the shots, because I was concerned with the lack of menstrual cycle but they said it was normal to not have a period after ceasing the Depo. I was so paranoid that I even took a pregnancy test, even though I was absolutely certain I was not pregnant. (A brief side note regarding the Planned Parenthood… a great place to go if you don’t have a regular OB/Gyn, but not if you are trying to start a family. I find that they are impersonal and not exactly professional. No offense to you who frequent the PP, just my humble opinion.)

In January of 1999 I had my annual exam with my new doctor, an OB/Gyn, Dr S, who I had first met a few years earlier while observing the birth of a friend’s daughter. She spoke so highly of him (and his partners, too… very important, in my book!) that I knew he was the one I wanted to deliver my children. After a brief chat and a normal exam (BTW ladies, men are far more gentle than women during those special exams!) he prescribed a prenatal vitamin and we parted ways. His last words to me were “Don’t worry. We’ll get you pregnant!” Very reassuring! Especially since he never mentioned my weight, the fact that I was overweight, or even losing weight, which I had tried before (many, many times before!) with no real success. He made me feel good and more importantly, he made me feel normal.

Okay. Time for a little background history…
I started my period when I was 14 years old. (A late bloomer!!! Ha ha ha!) Between the ages of 14 and 18 (when I started taking the Pill) I had a period approximately every three to four months… obviously, I was not very regular, which was one of the reasons for wanting to start the Pill (you can guess the other reason!). I had not really been overweight in high school, maybe 10 extra pounds, weighing around 145-150 lbs for a 5’5” blond-haired, blue-eyed Dane. I was not horribly displeased, and now I would give anything to have that cute little body back! I met my then-boyfriend, now-husband when I was 19 and still “skinny.” I started putting on weight soon after we met, so I guess I attributed it to “settling in,” like some married couples do, gaining 10 or 20 pounds after the wedding and honeymoon are over. I put on about 25 pounds a year for a couple of years, then pretty much leveled off and gained the additional 50 pounds gradually over the next five years. Right now, I weigh the most I have ever weighed in my entire life, and I just don’t see an end to the madness!!! Which leads me to the reason for these pages. But more on that later…

I began the Depo Provera in December of 1995 because I kept forgetting to take my pills. I was on the shots for 3 1/2 years. I never had the horrendous bleeding that some have with the shots, but I didn’t have cyclical bleeding either. I thought, at the time, that it was a blessing, never having to worry about tampons and cramping, etc. My periods were never bad, even before the birth control days! I was never curled up in a ball on my bed, cradling a heating pad, like some of my friends who have endometriosis. But in November of 1996, I started having some abdominal pain. It would come and go, some weeks worse than others. It seemed to be linked to what I was eating because I would get diarrhea along with the severe cramping, all occurring about 30 minutes after a meal, but I could never pinpoint a specific food/s that would trigger it. At the same time this was happening, a friend of mine had her gall bladder removed because of gallstones… and her symptoms were similar to mine! Eureka, I thought! It must be the fatty foods… although I could eat at McDonalds and never have a problem, yet alcohol or stress would set my damn stomach off like nobody’s business!! And I was in the midst of planning my wedding… not exactly the most stress-free time of my life! It got so bad that I was being woken up by the pain three or four times in the night, running to the bathroom and curling up on the toilet! Once, the pain was so bad that I was curled up on the throne, dry-heaving into the wastebasket. Not exactly what I would call a party!!!

After a year of this, I was finally encouraged by family and friends to see a doctor. After running some blood tests, including a thyroid test, she (tentatively) diagnosed gallstones and I went in for an ultrasound, which, of course, came back completely normal: no stones. Sigh… back to the drawing board! But at this point I was so frustrated (not to mention I thought all this was in my head!) that I gave up on her and never went back for my follow-up exam. I still have the stomach pains, but they are fewer and farther between, thank goodness!!!

Okay, back to the present.
During my annual exam with Dr S in January of 1999, I mentioned the stomach thing. He recommended that I go to another doctor and gave me a indefinite diagnosis of spastic colon, but I never have followed up on it. Both in November 1999 and January 1999 I had spontaneous periods. I skipped December and February… then came what I refer to as Bleeding Hell Month: March. I bled soooo bad for the entire month of March… I don’t know where it all came from! I bled for three weeks, and not the trickle I was used to: heavy I-can’t-go-an-hour-without-changing-my-tampon bleeding. It was awful! I had never bled like that before, and never have since, thank God! After three weeks of this uncontrollable bleeding, I called Dr S’s advice nurse, saying, “Is this normal? Or am I hemorrhaging or something?” After conferring with the good Doc, they prescribed something (I can’t remember what) to stop the bleeding. It worked!!! But a week later, it was back… but not as bad, and only lasting a week or so. I went in to see Dr S right after that for him to check me out and make sure everything was okay. He did a quickie feel-up to see if my uterus was still mobile and not swollen. Everything was fine, just getting back into the swing of things, he said. “Okay,” I thought. He told me to start documenting my basal body temperature to see if I was indeed ovulating. Well, indeed I was not!!! My first chart, in May, was a dismal failure. As a matter of fact, my temperature went down at the end of the month! (Hmmmm… I wasn’t getting pregnant… I wonder why!!!)

I faxed my May chart over to the Doc, and he prescribed 50 mg Clomid to be taken on days 5 thru 9 of my June cycle. I had some concerns regarding the Clomid… I was wary of any “fertility” drug. I didn’t want sixteen babies! As an added bonus, twins run in our family. How much would that raise my chances of a multiple birth? Well, not much, it turns out. Clomid only raises your chance for multiple births by 2% to 3%. Anyway… days 10 thru 15 should be the fertile days (if you are having normal cycles of 27 days), so the husband and I bumped like bunnies… to no avail. No temperature spike to indicate ovulation. No baby. Sigh.

I was so discouraged that I didn’t chart my temperature the months of July and August. Nor did I get a period either of those months. After a couple more pregnancy tests (negative… what did you think?), I called the doctor again. He proscribed Provera to kick-start a period and 150 mg Clomid for days 5 thru 9. My period came just in time for us to leave for vacation over Labor Day weekend in September… joy! (Also in September, I decided to kick the Diet Coke habit. This was not a WillPower moment, however… I was listening to a radio show about the chemical sweetener they put in Diet Coke (aspartame) and was revolted to hear that it transmutes into formaldehyde once it warms to room temperature! Ever since then, I can’t look at diet drinks the same way… they just gross me out! The thought of actually drinking formaldehyde… ugh!! {Visualize my shudder of disgust} But this made me realize an important thing in my temperature chart… You have to document any medications you take, and I was popping Advil as if it were candy. I pretty much had a headache every single day! And I would only take the Advil if I absolutely could not stand it. However, since I have quit the Diet Coke habit, I hardly ever have headaches! I still get the infrequent migraine, but they are fewer and farther between. During the months of September/October, I took Advil only once for a headache, as opposed to 10 times during the month of June. And I think that is pretty cool! In September, I also found out that my sister is sensitive to aspartame as well… it gives her headaches. Go figure!)

Anyway, back my September cycle… I dutifully took the 150 mg of Clomid on days 5 thru 9 and watched for the temperature spike. I was told to come in to the doctor’s office somewhere from day 21 to 24 for a progesterone blood test to see if I really ovulated, in case my BB temp was fooling me. The results were due in on Friday… and I had to wait until the following Tuesday to talk to the doctor! Arrggghhh!! Progesterone levels should be anywhere from 12 to 16 if you ovulate… mine registered at a whopping .06!!! Arrrrgggggghhhhhhh again!!!!!!! “But,” I whimpered to Dr S on that fateful Tuesday, “I’m showing a temperature spike today… I think I did ovulate this time!” So (out of pity, I’m sure) he orders another progesterone test and also runs a thyroid test as well. He never did tell me the results of the second progesterone test, only saying that the numbers had not improved. Which means they probably went down, knowing my luck!!! But he also noticed that my thyroid levels were on the lower side of normal, and there is a history of hypothyroidism in my family, so he prescribes L-Thyroxin to counteract that.

“Okay, where do we go from here?” I’m wondering. Dr S wants me to go in for an ultrasound of my uterus and ovaries, to see if everything is operating correctly and looks normal. My second ultrasound, and I’m not even pregnant! How exciting for me!!!

This actually was an interesting experience. Although warned by a friend that the internal portion of the ultrasound could be painful, I was optimistic that there was nothing really wrong. And because the ultrasound was done at the OB/Gyn’s office, there was a little monitor that was above the bed so the patient sees what the technician does. My tech was very nice, plus they keep the K-Y Jelly in a warmer so it doesn’t freeze you when they squirt it on! Whoo-hooo!

She did the external part first and it was interesting to see my ovaries and uterus in black and white. Everything looked good to me… but then again, I didn’t know what the hell I was looking at! Now comes the internal portion of the show… She first let me go to the bathroom to empty my bladder, even though it wasn’t very full. Then she takes this… thing… like an object out of your worst pornographic nightmare… out of a drawer, and she put a condom on it!!! I couldn’t help but make a crack about how convenient it was that condoms were invented for just this very purpose… she was not amused.

Anyway, I became a little concerned that she was going to stick the entire thing in me… all 18 inches of it! I was pretty sure it wouldn’t fit… She assured me that only about 4 inches was actually going to be… ummmm… inserted. {Sigh of relief} She liberally coats the condom-sheathed Probe in K-Y Jelly and away we go!!

Now, I was told that this might be painful… but for me, it wasn’t too bad. My left side was more sensitive than my right side, but that has always been the case with me, even during the doctor’s “feelie” exams. But in no way was it unbearable.

She zoomed in on the right ovary first and looked at it carefully from every conceivable angle. Then she took this little numbering thingy and started counting these little round black objects on my ovary. She looked at me and smiled, saying, “I’m counting follicles.” (Now, I thought this was a good thing at the time!! I thought she meant that I had a lot of mature follicles just waiting to pop open with life-giving eggs…) She counted up to 12 on the one side of the ovary (thankfully she couldn’t count the ones on the back side!), and then we moved to the left ovary. This was a little crampy, but as long as she didn’t move the Probe around too much, it wasn’t so bad. The picture wasn’t as clear on this side, but we counted “follicles” again. Little did I know what all of this meant!

I had to wait a few days to get the results from the doctor. He called me at work at 4:00 on a Friday afternoon, October 8, 1999. His voice was apologetic: “Well, Christy, it was exactly what I thought. You have polycystic ovaries. Did you see all the cysts on the ultrasound?” Ummmm, well, yes, but she said they were follicles, I say, stunned. I could feel my eyes glazing over… “Follicles, cysts, whatever. Same thing.” Keep in mind that I really thought nothing would be wrong with me! He proceeded to tell me a little about the disease and treatments including surgery and drug therapies, like steroids (with a side effect of weight gain, just what I need!). He said, reassuringly, that he has had good success with women getting pregnant right away after having the surgery, which is laparoscopic and consists of him lasering and draining the cysts (which on my ovaries numbered into the twenties per ovary) and a D & C (dilation and curettage). Of course, I wasn’t about to give him any firm decision about anything right then! I needed time to think about it, discuss it with my husband and my mom (who I work with). Of course, Tyke was away hunting and wasn't going to be back until Sunday sometime… and I’m left all by myself, with the pressure of this disease hanging over my head… what a way to start the weekend!!!

I really was okay with the situation until I talked to my mom. When I heard her voice, I just started bawling!!! It’s pathetic how a mother’s voice can have that kind of effect on a person! I told her the diagnosis and the treatments. Her reaction was basically that if the surgery was what I needed, then that was what I should have. My sentiments exactly!

Luckily, I always fill my weekends with a bunch of different activities when my husband is out of town, so I was never really alone that weekend, until Sunday. This turned out to be a really good thing! If I hadn’t already had plans on Friday night, I would have gone home and bawled my eyes out. And eaten a carton of Ben and Jerry’s Chocolate Chip Cookie Dough ice cream to comfort myself. As it was, I was all set up for company (convenient, eh?) to soothe me, and I called some other people to talk to about the situation. The people who helped me the most were those who have been actively interested in this condition since day one and have made an effort to be a part of my life, and they are my “support group.” I truly appreciate it, people!

When Tyke got home on Sunday, it only took a few minutes to decide what we wanted to do: surgery. It would get me to the state I wanted to be in (pregnant) in the fastest way possible. I called Dr S on Tuesday to set it up. He was very confident that my insurance would approve the surgery because it is a common treatment of PCOS. We scheduled the surgery for November 3 with a consultation with him on the Thursday before the procedure. Once I knew the date, I started telling everyone about it… I hadn’t wanted to tell everyone prematurely. Better that they be kept in the dark until the last minute!

Tyke came with me to the doctor’s appointment for mental support. I was so sure that I’d be a total wreck when we left the office! As it turned out, the whole thing was less of a deal than I thought it would be. We just sat down in Dr S’s office all civil-like (this was the first time that Tyke met Dr S) and he went through the procedure with us, step by step. Incision in the belly button, blow up my belly with gas, take a look around, burn off any cysts… and here is where the big whammy came out. He was pretty confident that I have endometriosis. From my reading on the Internet, I knew that the incidence of PCOS rises if you have endometriosis; in fact, my friend who has endometriosis had a laparoscopy for it- they also found cysts on her ovaries (one of which was ruptured and hemorrhaging). It was at this time that I thought… maybe my abdominal pain was linked to PCOS after all! Well, we would find out for sure during the surgery. Dr S assured me that if he found any abnormalities (endometriosis, adhesions, cysts, etc.) he would take care of them all while I was under… no need to go through this more than once! He would then dilate my cervix, take a look around my uterus and remove any cysts that may be there, and then do a hysterosalpingogram (also known as “hsg”)… which I have heard is absolutely the most painful thing a woman can have done to her nether region! This hellish test consists of injecting dye into the uterus and fallopian tubes, then taking X-rays to see if there are any blockages. Dr S said that he would keep the camera in my belly so he could actually see the dye coming out of my tubes. Lastly he would perform the D & C. I was told that the reason for the D & C is so there is a fresh membrane layer in my uterus. Because I haven’t had regular periods for so long, the endometrial tissue layer may be extra thick and unhealthy. Let’s just say I was very happy to hear I would be unconscious during this whole thing!!! It would all be over soon, I thought.

Dr S told me that the insurance approval was one step away from being complete. He wanted me to call the bookkeeper on Monday to ask about it and make sure we got the final authorization. The surgery was to take place on Wednesday… I left a message for her on Monday and made an appointment for Tuesday with the hospital to pre-register and fill out all the paperwork ahead of time. At two o’clock on Tuesday, the bookkeeper called me with bad news… my insurance company refused to authorize the surgery! At least I found out before I had it all done… but nevertheless, I was outraged! They insisted it was a treatment for infertility… and I didn’t have infertility coverage. I couldn’t believe it! Talk about pissed off, frustrated… and unable to do anything about it! Dr S called me to confirm everything and tried to tell me about some alternative treatments, but I was just too out of it. I couldn’t concentrate on anything he said! He told me to call him back whenever I had the chance and we would discuss other options.

After talking to the husband and the bookkeeper again, we decided I would call the insurance company and see if I could challenge their decision. After being on hold for 15 minutes, I finally got through to a human being. She told me I had to put my information into a letter and send it to the “Grievance Committee,” who would review my case and either change their original decision or stand firm. After much thought, I decided to not do it. My reasons? Well, they are twofold. Firstly, this insurance company is dumping us at the end of the year anyway, so I can try again with the new company (whoever they may be). Secondly, I would put a lot of effort into the stupid letter, and they would take eight weeks to make their stupid decision, and it would be too damn late! I would no longer be covered by their stupid insurance. Get me?

Okay. Enough of my raging. If any of you have stuck with me this long, kudos to you!!!

I will be adding more to these PCOS pages as more developments come about. I appreciate you all reading my story... I promise to bring you more later!

December 28, 1999
Well, I had the appointment with my OB/Gyn this morning. It turned out to be fairly informative but not very productive. You’ll soon see what I mean.

Naturally, I was kept waiting in an absolutely *miniscule* blue gown for 20 minutes in a room whose temperature couldn't possibly be read on a thermometer, it was soooo cold... but who wouldn't expect that? *G*

Blood pressure was fine (I've never had a problem with that, thankfully), and I had the nurse look back in my chart for my weight at my last annual (which was in January of '99). I weighed only two pounds more a year ago! And I've lost 15 in the last month. Oh well.

Anyway... in he comes, cheerful as usual... and we begin discussing my situation. Now, keep in mind that the last time we spoke was at my pre-surgery appointment... then I never had the surgery because my insurance sucks!!!
He asks the usual questions:
"Pain while having intercourse?" Yes, a little. He then wants me to describe where the pain is. "Well... ummm... inside. You know," I reply. That seemed pretty clear to him.
"Any periods without Provera?" No. (No surprises there.)
"Last period?" Right after Thanksgiving.
“Breast cancer in the family?” Yes, my mom had it but has been in remission for 5 years.
"Any problems with constipation or diarrhea?" Yes, I tell him. I’ve begun a low carb diet and that causes a little constipation from time to time. But I’ve lost about 15 pounds, which I think is pretty good. He was very impressed with this news. We then discussed the low carb diet, and how in some women it can cause ovulation. Of course, that hasn’t been the case with me, but I’ll keep trying.
“Anything else going on?” Well, I’ve stopped drinking diet sodas and this has caused my number of headaches to decrease which had a direct effect on my Advil consumption, so I’ve noticed a constant, dull ache in my pelvic region and some other, stronger pains and cramping. “Where are the pains located?” In my ovaries, I say, or where I think my ovaries are located. Which makes perfect sense to me, and I think it did to him, too.
I also told him about my reading the book “Taking Charge of Your Fertility,” which I could tell he thought was a smart move on my part. He said that it seemed like I had everything under control.