| Proud new aunt!
Join Date: Mar 2004 Location: Oak Lawn, Illinois
Posts: 212
Points: 2,029.00 Bank: 0.00 Total Points: 2,029.00 |  My story...Sometimes it feels like too much (long!)
Sometimes I feel like it’s just all too much to handle. Lately I keep going back in my mind to when I first realized something may be wrong…I guess my troubles began back in high school.
Since the beginning of my womanhood, I had infrequent, unpredictable cycles, often going several months without a period. My mother advised that my hormones would eventually straighten themselves out, and that young women frequently had strange cycles. At the age of 19, my cycles had not evened themselves out. As it was becoming clearer to both me and my mother that maybe something was wrong, she took me to see her gyne. After his initial exam and my first pap test, he seemed to think there may be something going on and I was sent for an ultrasound. Terrified of what would be found, if anything, I went, clutching my mother’s hand like a small child (which I very much felt like at the time). I remember going back and forth in my mind, first thinking that they would not find anything wrong, as I had always struggled with my weight during my teen years, then thinking that maybe it wasn’t just my weight issues and that something was horribly wrong and I was really very ill. Other than that, I honestly don’t remember much about the time between the test and the follow-up appointment with the doctor. Finally, I had my follow-up visit with the doctor and I learned that he believed I had a paraovarian cyst, and he was recommending laproscopic surgery to remove the growth. My parents agreed, as I was still covered under their insurance as a dependent, and surgery was scheduled. This whole time seems now like it was forever, but in reality, it was probably only a few short weeks.
In October of 1995, I underwent what was to be a simple, routine outpatient procedure to remove the cyst. I remember waking up from surgery to find that the growth had been successfully removed. Unfortunately, I was not going home that day, as the doctor was unable to remove the cyst through laproscopy and I had a major incision in my abdomen that stretched from my belly button down to my pelvic area. As I began to recover and the swelling decreased, I found that I now had a much flatter stomach…the doctor reported the cyst was actually about the size of a (slightly flattened) football and had stretched from my ribcage to my pelvic bone. My weight was down from just over 200 lbs. to 179. I had also been told that now that the cyst was removed and the fallopian tube and ovary had been surgically reconstructed (due to much stretching), my cycles should become normal within a few months or so.
Unfortunately, that was not to be the case, and I was given a prescription at a follow-up visit for 10 mg of Provera to be taken 10 days of the month to induce a “normal” period. Within six months of this treatment, I had become a raging hormonal roller-coaster. One minute I would be fine, the next I would be a raging maniac, crying for no apparent reason whatsoever. At the same time, my weight gradually began creeping back up. In the course of a little over a year, my weight had topped the 225 lb mark. I was still seeing the same gyne at regular 3 month intervals, where I was given oral contraceptives rather than Provera to induce regular periods, and I was still being told that for some reason, some women just don’t ovulate, and apparently I was one of them. After a few years of the same routine, I became discouraged and blindly accepted that this was the way things were, and there wouldn’t be any way to change them. I began neglecting my health, not having regular doctor visits (at the time I saw this as more of a nuisance than a help, so what was the point?). I would occasionally search the internet seeking websites dealing with women’s health issues and information on what may cause irregular periods, but never really doing much with the information I gained. I would get into regular “slumps” and had regular feelings of “why bother?” (very similar to how I’m feeling now).
After a stretch of several years without seeing a doctor and having maybe 2-3 periods per year, little black hairs growing on my abdomen right around my scars from surgery and getting frequent headaches and general feelings of not being well, I began to pay more attention to information I was getting from the internet. One particular article describing Polycystic Ovarian Syndrome caught my attention. I remember feeling that I could relate with so much of what PCOS was about, and became fairly certain that this was my problem. I switched gynecologists to another doctor, hoping that by bringing up my symptoms and copies of the last bloodwork I had, this new doctor (well, new to me anyhow…he had been practicing for many years) would be able to pinpoint and tell me that PCOS was the problem. However, he didn’t say anything about it to me, so I began to doubt the problem all over again. I was given a prescription for 12 months of birth control pills and sent on my way.
For at least a little while, I had returned to regular cycles by taking the pills. However, feeling dissatisfied both with the second ob/gyn, I was never to return to his office either. For reasons I still do not understand, I felt I could not bring up PCOS to a doctor and suggest that it may be the problem and demand to be tested. It was to be three years before I set foot in another doctor’s office. By this time, my periods, irregular as they had been, had completely disappeared.
I scheduled an appointment with a ob/gyn who had, according to my insurance company’s website, a subspecialty of repreoductive endocrinology. Finally, I thought I would get some answers. With my periods completely gone, more hair on my abdomen than ever and hair beginning to grow on my upper lip, along with the acne I had begun to get on a regular basis, I felt very unfeminine. As my appointment with this third doctor approached, my apprehension level grew and I began to doubt myself even more than I already had. I had recently become a member of SoulCysters, and was positive that PCOS was the root cause of all my hormones going so nutty, but what would make a doctor listen to me about PCOS, when I never completed college? At my first meeting with this doc (I scheduled the appointment to be for a regular exam, pap test and all), he mentioned that he suspected PCOS. He also wanted to perform an endometrial biopsy due to the complete lack of periods. I felt so relieved…here was a doctor who I thought knew what was going on, and how to fix it.
I returned to the doctor’s office at the end of that week for the bloodtests and biopsy. After the procedure was complete, the nurse had given me a pack of Yasmin to bring on a period, and I was told to schedule a follow-up for two weeks to review the results of the testing with the doctor. At the follow-up, the doctor confirmed the diagnosis of PCOS. Finally, I thought, I’ll get put on metformin or something similar and be able to lose some weight and get things under control. Wrong! This doctor, similar to the second doctor I had years earlier, gave me a prescription for 6 months of pills and told me to follow-up with him at that point. This seemed to be his easy fix for the situation…after all, I didn’t have a partner and was not trying to get pregnant.
Fine, I thought, I’ll take the pills, get my hormones under control and perhaps at my six-month checkup get a prescription for met. Now that I had a diagnosis from a doctor, I felt I could do more reading on PCOS. I guess before I didn’t do more research, because a part of me didn’t think that it was a big deal. Unfortunately, I was wrong. The more reading I did, the more I was once again discouraged and disheartened by my treatment. Oral contraceptives were not solving my problems, only covering them up. And I still had all this weight to lose. Here I thought I found a doctor who knew about PCOS and how to treat it, and again, was wrong.
A few months into the birth control pills, feeling like it didn’t matter, I decided to switch doctors yet again, and got a copy of my bloodwork and test results from doctor #3. This time, I made up my mind, I was going to the only doctor in my state who was listed as a professional member of the PCOSA. Nervous about requesting a copy of my records and “firing” this new doctor whom I had sought, I told the office I was moving and was going to need my records for my new doctor. Who knows why, I just couldn’t admit to them that I was unhappy with my treatment and was going to another doctor.
Nervous, scared, afraid of being ignored because I was going to a reproductive endocrinologist even though I’m not looking to get pregnant or have children, I made the appointment with the doctor 30 miles away. I didn’t care how far I had to drive, I was going to get help. Right from the start, his office staff was kind and gentle with me. I was almost in tears on the phone scheduling the appointment – maybe as a result of the staff’s kindness or my own relief, I’m really not sure. I still don’t understand what has me such a wreck at times. I had to wait almost a month to see him, but the wait was so worth it.
As my appointment drew closer, I again became very apprehensive and doubting. Why was I bothering? What if he didn’t have the same concerns or feel that the treatment options I was looking at were a good idea? Shortly after getting in to see him, my fears eased. We talked about my history, reading I had done, treatments (met or actos/avandia) that I read would help and other effects of PCOS. I think it was easier for me to talk to him, having already received a diagnosis of PCOS from the previous doctor. I was surprised that he didn’t do a physical exam…I guess he felt it wasn’t really necessary, with having the information from the previous doctor. In the course of our discussion, he seemed to favor treatment with Actos, but he warned me I would need regular blood testing to check my liver function, just as a precaution. He also wanted to check more hormones than just the bare bones basics my previous doctor had done.
I agreed and scheduled another appointment for bloodwork for later that week. I had the blood tests done and his office staff had called me a day later that my liver function was fine and I could start the Actos. I asked them to call my pharmacy and that night I had a bottle of 30 pills in my hot little hand. I was to start the pills right away and call his office on the first day of my period to schedule testing for cycle day 21 – to test progesterone levels and my liver function (this was about 3 weeks after I had started the Actos, as my period came 3 days after I started as a result of the Yasmin).
I arrived and had the bloodwork drawn…sure enough, I did ovulate and things were looking up. Now here I am, into the second month of Actos treatment, no longer taking the birth control pills, and find myself an emotional wreck all over again. I’ve been watching what I eat, exercising more and taking my pills as directed. Apparently, it’s working and I’m doing everything I should to get things under control.
The last few days I’ve felt like everything is so out of control again, and I’m so down in the dumps. My period came last week, right on schedule just like it should. I don’t know, I just feel so helpless and alone. Maybe I just need to see a counslor, or need a vacation, or just a best friend’s shoulder to cry on…
Sorry this is so long, I just needed to vent. Like I said hours ago at the beginning, sometimes I feel like it’s just all too much…
__________________
DX PCOS ~ 5/21/2004
DX Type II Diabetic ~ 4/15/2005
Actos 45mg
Glucophage XR 2000mg |
