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Join Date: Apr 2009
Posts: 38
My Mood:  Points: 2,638.19 Bank: 0.00 Total Points: 2,638.19 |  unoriginally....my story!
Once upon a time, a long time ago, in a far away land....
Well, actually it was less than 20 years ago, and only about 3 hours from where I live now. But that doesn't sound nearly as exciting. Unfortunately there are no white knights, black knights, evil mages, or dragons in this story, so I guess it wouldn't have been all that exciting to begin with.
I'm 32 years old now, and I've NEVER had a regular period. No one thought anything of it when I first started way back when, since it's normal for teenagers to be a little irregular. By the time I was 15 I was going up to three months at a time without my period. When I did get it, it was agonizing. I would have incredibly heavy flow, with massive blood clots, and very very bad cramps. The cramps were so bad that my doctor actually gave me an open prescription for NSAIDs. Those are the nasty ones that give you ulcers by the way...as I can attest to!
By the time I was 17 my periods were at least 6 months apart, and when I did get them, they were bad enough that I ended up hospitalized with a morphine (sp?) drip at least twice. They thought I was having a miscarriage, even though it was completely impossible for me to have been pregnant. All of this time, the doctors kept just patting me on the head, and saying it was just the way I was, there was nothing to worry about, and prescribing me with a different kind of BCP. As a side note, I think I've probably been on almost all of the different kinds of BCP out there, with the exception of the newest ones.
The BCP helped regulate my periods a bit, but I usually quit taking it after a month or two. The side effects were not pleasant. Imagine the worst possible PMS you can...for the three weeks I took the pills! The only relief I got was the one week I was off the pill and supposed to be on my period. At one point, when I was about 19, my partner threatened my doctor with physical violence if he didn't find some way other than BCP to control my periods, because he couldn't handle being around me when I was taking the pills!
That doctor actually started doing something more than just patting me on the head. He did some blood work, and almost everything came back...wait for it...within the normal range, but at the low end of the normal range!! I'm sure most people reading this aren't too surpised at those results. The one thing that did come up very low was my progesterone. Anyway, since my partner and I were engaged, and planning on eventually having children, and since I obviously wasn't ovulating, the doctor put me on clomid. He figured, based on the results of my blood tests, that it would probably take 6 + months for me to even begin ovulating, let alone conceive. That worked out quite well with our plans, since we were planning on getting married in about 8 months from that time. Imagine everyone's surprise when I conceived the very first month on the very lowest dosage of clomid! The doctor figured that it must have just coincided with my yearly natural ovulation event!
After I gave birth to a beautiful baby girl in March 1997, everything seemed to be settling down nicely. Within 6 months of giving birth, I had nearly regular periods for the first time in my life. It was great! But it didn't last. Gradually my periods got longer and longer, with less and less time between them. They went from a normal flow, to completely unpredictable, going from extremely heavy flow to just barely spotting back to extremely heavy flow at a moment's notice. It eventually got so bad that I couldn't work! Imagine having to explain to your boss that you have to go home because you've gone through the month's worth of supplies in your desk in less than a day...
We had moved by then, and my new doctor did a few blood tests...which came back low but within the normal ranges... and tried to put me on BCP as a "cure". I refused. There was something wrong, and I knew it. I didn't want a bandaid to cover it up, which is what BCP would have been, I wanted to know what it was and fix it! He shrugged, patted me on the head, told me it was just the way I was and to learn to live with it.
Eventually we moved again. By this time I had had my period for nearly two years straight, with only a day or two of period free days in between month + long periods. I was chronically anemic, although I ate so many iron-rich foods that it didn't really affect me much. I found a new doctor in our new town and after the first initial consult appointment, I went back to see her, and this time I wasn't going to let anyone slough me off.
I told her the whole story, all of my medical history, and what all of the doctors from my past had told me. And I told her that if one more doctor did the blood work and then patted me on the head, told me it was just the way I was and to live with it, I was going to punch them. She eyed me warily for a second, then sent me off with the usual blood work requisition. A few days later I got a call from her office asking me to come in for the resutls. She told me that the results showed exactly what I told her they had always shown. Low hormone levels, but within the normal range, with the exception of progesterone, which was slightly below the normal range. And then she sent me for an ultrasound. She was the first doctor who didn't just look at the blood work and see nothing out of the ordinary. Maybe I should have threatened to punch one of my earlier doctors!
The ultrasound technician did the ultrasound, and nothing showed up. She left the room for a few minutes and then came back with some additional paperwork and offered me an internal ultrasound. At the time, I hadn't realized they could be done that way. She explained that in women with fertility issues, sometimes what they were looking for was so small, that an external ultrasound just wasn't clear enough. And fat tissue reduced the clarity even further. I signed on the dotted line, and they did the internal ultrasound. A few days later I got a call from my doctor again. The ultrasound had shown a thickening of the lining of my uterous. Considering the fact that I had basically been shedding the lining continuously for the past two years, that was definitely a cause for concern. She referred me to a specialist.
The specialist wasn't too concerned about the ultrasound at first. He did an in-office biopsy of some of my uterine tissue (definitely NOT a fun experience!). The results came back normal. But he told me that the more he went through my file, the more something just seemed out of whack (DUH!), and he scheduled me for a D&C. That was a whole different experience, but the result of it was a moment that is burned into my memory forever.
I was attending college at the time, and it was September 4th. I had only been back at my second year of college for a few days. I was in his office and he was telling me the results of the tissue biopsies they had taken during the D&C. It was sunny outside, in that dusty fall kind of way, and the clock on the wall was off by about 5 minutes. It was just after 1 pm, but the clock said it was nearly 1:10. The words I remember most distinctly are "greater than 90% abnormal cells", "precancerous", and "need to treat it NOW".
I was 27 years old and my doctor was telling me that I had a condition called uterine hyperplasia. It's the leading cause of uterine cancer. He believed that we had detected it just in the nick of time. It's one of the hardest cancers to detect, and the usual treatment is an immediate hysterectomy. I refused. I wanted to have more children yet, and I wasn't willing to give it up. Not yet. So he did the next best thing and put me on MASSIVE doses of progesterone. The pharmacist actually had to call my doctor to confirm the prescription because she'd never seen anyone given such a high dosage.
I was miserably ill for 6 months straight. I was tired all of the time, and nauseous constantly. Did you know that, once you're used to it, you can eat almost anything no matter how nauseous you are? Because if you don't eat, your body becomes very unhappy with you. It would rather you ate something, then puked, then ate something, then puked, etc, etc, etc, than have you eat nothing at all. The only good thing about those 6 months is that I didn't have my period at all! After 6 months was up, he did another D&C, and the biopsies all came back clean...no abnormal cells! He recommended that I come back in a year and get checked again, and that the condition would probably come back if not watched carefully.
I moved yet again before that year was up, and my new doctor thought it was all a bunch of hooey, and that 27 year old women didn't get uterine hyperplasia. Only women who were post menapausal were at risk for that. Before I could find a new doctor, I moved yet again. And then moved again. I should note that my periods were ALMOST normal for most of this time. I still had extremely heavy periods, and sometimes they'd last 10 days, sometimes 15...and they were anywhere from 2 weeks to 2 months apart, but still...that was better than they were before!
I ended up in Calgary, and for the first time in my life I heard about PCOS. My older sister was diagnosed and began treatment for it. She told me to talk to my doctor about it, and so, being the good younger sister that I am, I did. I should note that, by this time I was so cynical of doctors that I didn't think they'd do anything anyway, unless I lit them on fire. And I was right. My doctor sent me for blood work (of course), and when the blood work came back within normal ranges (as usual) he did send me for an ultrasound. The ultrasound came back clean, with no cysts or anything else unusual. The doctor patted me on the head, told me I was just fine, and offered to prescribe BCP.
By this time there was someone new in my life (the previously mentioned engagement had fallen along the wayside...thank goodness!). We were talking about weddings and having more children, so I went back to the doctor. He did a few more blood tests, decided I wasn't ovulating despite having my period, and put me on clomid, with no results. So he sent me to a specialist. The specialist took one look at my medical history and said "Oh, you have PCOS!". I argued with him, and told him that my doctor had tested and done ultrasounds and such. He told me that some doctors were stuck in the 80s and didn't know that just because it's called polycystic doesn't mean that every single person who has it will have cysts. We went through the symptoms checklist and it was "check..yep...check...yep...check...yep" to almost everything on the list. Then he told me that things like uterine hyperplasia were more common in women with PCOS. I almost fell off my chair, because I hadn't told him about that! Because I was trying to conceive, he didn't start me on treatment for the PCOS right away. He figured that it would be better to have a baby, then go through the various treatments. Before I could conceive, I was transferred to another office, and moved, yet again.
And here I am now. Back up to an almost continuous period, in a new town, and completely unable to find a family doctor who will listen!
The frustration is intense. I go through periods where I absolutely hate myself. I look in the mirror and I don't see me anymore. The weight has crept on, no matter what I do to try and fight it, and I'm almost at the point where I don't see the point in fighting it anyway. I'm 32 years old...I shouldn't have acne like this anymore. I shouldn't be trying to scrape enough pennies together to go for laser hair removal on my FACE!
I swear by all the gods that are holy, if one more doctor tells me "it's just the way you are...either go on BCP or learn to live with it" I'm going to give new meaning to the phrase "going postal"!
But...on the good side of things... I haven't given up yet. My sister helps keep me going. I'm stubborn as well, which helps immensely! Even when I'm at my lowest, I've never quite gotten to the point of giving up. I have a doctor appointment tomorrow with a new doctor. Keep your fingers crossed for me that this is finally the one that will actually listen and who will do something for a change! |
