Hidden in a Flesh Suit - My Battle with P.C.O.S. Part 1 - Oh, Bloody Heck!

Each of the common issues associated with P.C.O.S. has it's own stigmas and inconveniences associated and I'd just like to share a bit about each of the issues I've experienced so that people I know (and hopefully people I don't know) can have a greater understanding of how difficult it can be.  There are certainly much worse conditions to have to deal with, but there are a lot of sneaky major health problems that can also be related to P.C.O.S. that people just don't realize.  My goal is to bring some of the challenges that women with P.C.O.S. face into the light and to hopefully eventually help other women who struggle like me to find hope and encouragement in their battles to remain healthy in spite of the challenge.  Sometimes dealing with P.C.O.S. and trying to find the treatment (or treatments) that work best for you can make you feel like a guinea pig for the doctors, just trying things out and see what works.  Doctors can also be quite insensitive about it and many family doctors are not knowledgeable about the condition.  I have met doctors who did not even know what it was despite the fact that is believed to affect 20-25% of women in the U.S.  Regardless of how many medical professionals view the condition, I would encourage anybody facing this condition to fight for what works for YOU and don't be afraid to find another doctor if yours doesn't take your concerns about the condition seriously or understand the difficulties associated.

So as I mentioned previously, one of the problems associated with P.C.O.S. is irregular menstruation.  This was the first problem that I experienced that was even noteworthy, so it is the first I will discuss.  If you are a man and not comfortable discussing or reading about women's menstrual cycles you should check out now, though if you have a woman in your life who experiences this condition, it may be helpful for you to understand how difficult it truly is.  I will share some of my personal experiences related to this particular issue to make it more personal.  If you are a woman or a man who is okay with hearing about the ways a woman's body works, this is where my real story with this condition begins.

I was a bit of a late bloomer as far as puberty goes and I was 14 years old before I got my first visit from everybody's least favorite aunt (Aunt Flow).  I went through high school without many visits from this dear aunt, probably no more than a few a year.  I knew that this wasn't "normal" but I also had learned that it's not uncommon for it to be irregular for the first couple of years.  When I had required physicals for sports I was told that it's not uncommon to have a delay in becoming regular in athletic females, and since I played soccer almost year found for most of high school, there seemed to be nothing to worry about.

Once I graduated high school and no longer played soccer year round, the irregularity of my monthly (or perhaps semi-annual would be more appropriate) visitor began to become more of a problem.  Once I no longer had the same level of activity, I gained quite a bit of weight very quickly (which I will talk about in another installment) and my breasts grew approximately three cup sizes the year I was eighteen.  From what I've been told, this was likely because my hormones were no longer suppressed by extreme level of activity I had been doing, though I was still relatively active, so this allowed my "normal" to kick in quickly.  When I say my "normal," there is actually nothing normal about it. 

My periods were still equally irregular as far as how often they came, but once I no longer had the intense activity, they started to hit hard and the length of time that they would last became quite irregular as well.  I would have some that lasted for only three days that were barely noticeable like they had been in high school, then I had others that would last for 20 days that had a few moderately heavy days, but nothing horrible.  The worst of the worse were the periods that lasted a more standard six to seven days.  When these came, the second and third days would hit so hard that I could overflow a tampon and a maxi-pad in just over an hour for two solid days.  By the end of the first day, I would be exhausted, feel sick to my stomach, weak and dizzy.  My co-workers often commented during these visits that I looked like a ghost because I was so pale.  The worst part of it all, was that I never knew which version I was going to get.  So it could start off and seem fairly light, then I could be out and about, at school, work, hanging with friends and all of a sudden I could be at the point where I started overflowing frequently.  I learned to be prepared no matter what, but at first it was quite a hassle, never knowing when I would need to have feminine hygiene supplies available and in what quantity.

Aside from the obvious inconveniences that are associated with never knowing when you might menstruate, there are also certain stigmas and emotions associated with it as well.  I have had many times where I have felt as though I'm not a "real woman" because my body does not do what a woman's body was designed to do.  I have viewed myself as broken or dysfunctional because I can't tell when my period is coming.  I have sat longingly listening to women speaking about how their cycles synced with one another because they spend so much time together and wished that I could experience that.  I've heard time after time after time how "nice" it must be to only have three or four periods a year - because if you haven't experienced a twenty day long period you can't possibly understand how quickly you would trade it for the consistency of a regular period.    But all of these emotions and misunderstandings are NOTHING in comparison to the stigma and general misunderstanding of P.C.O.S. in the medical community.

When I was 21 years old, I finally decided that seven years was plenty of time for my body to regulate itself and for my periods to become regular and since they still weren't regular, it was time to get it checked out.  I talked to a couple of friends and found a female OBGYN that was supposed to be nice and I scheduled an appointment.  The actual MD was out on maternity leave, but her nurse practitioner was still seeing patients, so I went to see her.  I was extremely nervous since it was my first time visiting an OBGYN and since I knew that something wasn't quite right.  The nurse practitioner did the Pap and well woman exam then after we discussed my concerns.  I honestly do not remember anything about the exam because all I remember is the conversation afterward.  I told her that I was kind of concerned because after seven years, my cycle had still never become regular.  She started off with the general questions about sexually activity and I told her that I had never had intercourse.  She kind of rolled her eyes but didn't say anything.  She asked what was the longest I had ever gone between periods and I told her 9 months.  "And you didn't have a baby during that time?"  I repeated that I had never had intercourse.  She asked me how long it had been since my last period.  I told her it had been four months and she looked at me and asked, "And you're sure that there is no chance that you're pregnant?"  I repeated again that I had never been sexually active.  She looked me right in the eyes and said, "You know if you're not honest with us then we can't help you." Then she proceeded to tell me how unlikely it is to still be sexually inactive at 21 years of age in modern society.  I repeated again that I was not sexually active and she told me that she was going to prescribe birth control because even if I wasn't sexually active, it would regulate my periods and if I was (which I probably was) then it would keep me from getting pregnant.  I left that office so embarrassed and ashamed that my body didn't work right that I cried in the car on the way to the pharmacy to pick up the birth control, which wasn't even covered by my insurance!

I was never extremely thrilled about taking the birth control, but I did it for a year the first time.  I finally knew exactly when my period would come.  I knew that I would have a ridiculously heavy day that almost made me pass out on the second day every month (which was AWFUL).  I knew that I would have an emotional meltdown the day before it arrived every time (I was emo on steroids!) The P.M.S. was horrible with the birth control, but at least I knew what to expect and I could finally commiserate with all of the other women who had a "regular" cycle without hearing how "lucky" I was that it only happened a few times a year.  Once that first year was up, the pharmacy called the doctor's office to see if they would renew the prescription and the doctor's office had closed.  So if I wanted to get another prescription, I would have to go see another doctor.   I had absolutely no desire to relive that experience again, so I just decided to see what would happen without the birth control.  I went back to the irregular, unpredictable mess that had been my cycle before birth control and the positive that came with it was that the crazy emotional day each month disappeared. 

It took me FIVE years to build up the courage to go back to an OBGYN after that first experience.  I got fed up with the unpredictable nature and the sometimes 20 day long visits and I was getting close to the age at which I had always thought I would have kids (though I was still waiting for a husband, too) so I wanted to make sure that there would be a possibility if/when the time came.  I checked my insurance for a female OBGYN and just picked one.  I figured whoever I ended up with couldn't possibly be any worse than the first woman I saw, though I was still extremely nervous.  I made a great choice - the doctor I selected at that time was the one who diagnosed me with P.C.O.S. initially and also the one who would eventually care for me during pregnancy.  My second well woman exam ever was considerably less painful (physically and emotionally) than the first.  After the exam we discussed my issues and she wrote an order for blood work and I scheduled a follow up.  The next visit, I was old that the bloodwork was inconclusive but not necessary to diagnose P.C.O.S.  She told me that losing weight would be helpful but difficult.  She told me that it is important to not go an extremely long time between periods because it increases the risk of uterine and endometrial cancer.  She told me that even for people who are not sexually active birth control was the most reliable way to regulate menstruation.  I was once again not excited about the birth control, but by this point I was rather adept at internet research and I discovered that this was the most commonly mentioned "treatment" for P.C.O.S.  It turns out that it's not REALLY a treatment of the condition, just of that single symptom.  My primary concern with it at that time was that birth control often causes weight gain, and I really needed to NOT gain weight.  Fortunately, my doctor listened to me and prescribed one that was supposed to have a positive effect on weight loss. 

This new birth control was even more miserable than the one before, though the weight loss component did deliver, so that was a plus.  But instead of one EXTREMELY heavy days each month I had TWO.  It was at least predictable but extremely unpleasant.  There were no CRAZY emotional days before a cycle, but I began to have migraines before my period almost every month - and I'd never had a migraine before in my life.  This was a rough season but I really enjoyed the weight loss, so in spite of the negatives I continued it for nearly two years.  I stopped taking it in 2007 when I had a breast reduction because my cup size had increased to an H by that point and it was inhibiting my ability to lose more weight and to keep off what I had already lost.  I was advised to stop taking it a couple of weeks before the surgery (since I still wasn't sexually active) because of the increased risk of blood clots.  After the surgery, I did not start it back up again because I was afraid that the estrogen in the birth control would cause my breasts to grow again.  I returned to the ridiculously irregular cycles. 

Over the next couple of years I experienced some other medical issues as well as an injury and had some tests and x-rays on different occasions.  When I went for one x-ray, as per the standard practice they asked if there was any chance that I could be pregnant.  I told them that there was not because I had never been sexually active, so of course the next question was "What was the first day of your last menstrual cycle?" and of course it had been several months and so I was informed that policy dictated that I needed to have a pregnancy test before the x-ray just to make sure.  The guy on this occasion was nice enough but it was still somewhat frustrating to have my honesty called into question AND to have to pay for a pregnancy test when I KNEW that there was zero chance it would be positive - all because society can't believe that people still wait and because I have a medical condition that causes me to go longer than usual between periods.  The hospital employees at least apologized for that one since they had to by policy.  I had a much worse experience with a primary care doctor who was aware of my P.C.O.S. and was seeing me for some digestive issues I was having.  I had been having nausea and frequent bowel movements and other related tummy troubles.  Of course he asked how long it had been since my last period and of course my answer was probably somewhere in the three month neighborhood.  He asked if I could be pregnant because that could cause digestive symptoms as well as the absent period.  I told him that if I was pregnant that it would only be the second time in the history of the world that something like that had happened since I'd never had intercourse.  I told him that the absent period was because of the P.C.O.S. since I wasn't on birth control and he seemed to be fine with that.  He said he would draw some labs for my well check and take some urine to make sure I didn't have protein in my urine.  He went to check the urine in office and came back.  He told me that there was no protein in my urine.  Then he paused and said, "Oh, and you're not pregnant, either." 

The belief in the medical community that women cannot be Bible believing Christians who save themselves for marriages was quite disheartening and caused me to have an extremely difficult time trusting many doctors.  As a result, it is now 9 years later and I STILL have not found a family doctor that I've felt comfortable enough with to trust for my general medical care.  I have tried, but I have found a general lack of understanding of what it's like to be a woman with P.C.O.S.  Fortunately, I have found extremely kind and understanding OBGYN's or just GYN's.

When I returned to my OBGYN the year after my surgery, I told my doctor that I had stopped taking the birth control because I didn't want my breasts to grow.  I told her about the other issues I had experienced also.  She prescribed me a different birth control that was low estrogen to ensure that wasn't a problem.  It also only had placebo pills every three months because she said that's all I needed to shed enough uterine lining to prevent the cancer risk.  It seemed to work well for me, the cycles were not particularly unpleasant.  What I didn't realize until my prescription ran out was that it had made me more emotional, angry, grumpy on a low level basically all of the time.  I had called to schedule my annual appointment about a month before my prescription ran out, but they were scheduling three months out.  My doctor at that time had suggested previously that since I wasn't sexually active, it might be good to see just a standard GYN who was not an OB until I was sexually active ready to think about having kids because they would be easier to get in to.  I really hadn't wanted to do that.  But when I came up on the three month wait, I decided it might be time to give it a try, so I did not schedule an appointment.

I got kind of lazy (and busy) and wasn't so emotional (though I hadn't noticed yet), so I waited almost six months before I tried to find practice with gynecology only.  I ended up getting a recommendation from the gastroenterologist I had seen and really liked.  The first time I saw the nurse practitioner at the gynecology only practice she ordered a transvaginal ultrasound so that they could find out the extent of my P.C.O.S. and what my ovaries looked like and scheduled me to come back for a follow up in a month.  By that time, I had been off of the birth control for a while and had discovered how much BETTER I felt not on it. 

During my follow up I was told that my ovaries were both filled with empty follicles which are normally released with an egg which indicated that I had not been ovulating and so my ovaries were enlarged.  The nurse practitioner told me what I already knew which is that birth control is the most common treatment and I told her that I REALLY didn't like how I felt on birth control and asked if there was any other way.  She actually listened to me and she told me that what is effective for women who are trying to get pregnant is Metformin, which is generally a diabetes drug and a ten day course of Provera every three months or so IF a woman's period has not come on it's own.  She said that the downfall is that it would not prevent pregnancy but understood that wouldn't be an issue for me.    Once I started that, I took the first dose of Provera and only had it once more three months later.  With the help of Metformin and eventually weight loss, I never went more than three months again until I got pregnant with my daughter.  For two years prior to my pregnancy I finally had regular periods without birth control every 5-6 weeks. 

After pregnancy, I have yet to return to having a regular cycle.  I have not returned to taking Metformin because I would prefer to avoid any health risks that could be caused by taking high doses of the drug for such a long period of time.  I continue to work toward finding a solution to regulating my menstrual cycle without causing any longterm health issues or concerns.  It can be challenging, because it feels like there will always be a struggle - but if my struggle can reach just one person, then it will all be worthwhile. 

Hidden in a Flesh Suit - My Battle with P.C.O.S. - Introduction

I've been pondering writing about this for quite some time but I have put it off repeatedly.  Partially out of pride, because it's kind of an embarrassing thing to talk about.  Partially because I wanted to fully wrap my head around what I wanted to say because it's an emotional topic for me, also.  And partially because I've been afraid - afraid that nobody would be interested, or even care, afraid that I would put myself out there to only hear crickets in response, afraid that people will think that I'm whiny or making excuses.  But today is the day I need to stop being afraid and stop caring about all of those things.  Because I feel like this is a struggle that God has put it on my heart to share.

For those of you who don't know what P.C.O.S. is, it is Polycystic Ovarian Syndrome.  It sounds like a painful problem that would affect my ovaries, right?  But really, it is so much more than that.  It is a hormonal condition that is generally caused by an imbalance in the male and female hormones in a woman's body.  It can cause irregular periods, "cysts" in the ovaries that are actually empty egg follicles because ovulation does not occur regularly, weight gain and difficulty losing weight, elevated risk of diabetes due to insulin resistance, facial hair, acne, sleep problems, depression and anxiety and infertility.  So the name is a bit misleading because as you can see, it impacts a WHOLE lot more than just the ovaries.

So what I will be sharing is my experience with the condition as well as the stigmas associated with it.  It truly feels like a losing battle some days because no matter how much work I put in, it's not going away.  I look forward to sharing more and I hope that you will come along on my journey!