*****CAUTION****** *****WARNING***** This post is open, honest and about ovaries, birth control, and all things associated with that jazz! If that is a problem, then maybe skip this post?!!
First, let me apologize for my delay in posting. I had a hope of being able to post weekly, but life got the best of me. I will work on it!
So here's a little story about Polycystic Ovary or Ovarian Syndrome or PCOS. Here's the catch though- this is my little story. I am not a doctor. I am a daughter of one, a sister of one, a niece of some, and a wife of one. My experience is unique and my goals and wellness plan are as well. This is not meant to treat or diagnose any reader, but rather give an honest account of my dealings while maybe reaching out to a reader who is struggling with the same symptoms etc.
Enter summer of 2012. I decided that I no longer wanted to take birth control. I hated having to take it. I hated the side effects. I hated knowing that I was ingesting synthetic hormones. Everything about it bothered me. So why was I on it?
I have had acne since basically I can remember. And around 2008, my face went cray cray. It blew up.
Cystic acne is not fun. Although most common in males, I had it. ALL OVER MY FACE. It was horrible. My skin was actually hot around the cysts and there is nothing that was working. In the midst of this painfully embarrassing moment of my life, I tried Pro-Activ. It made it worse. I apparently was allergic to the main active ingredient:
benzoyl peroxide. So at this stage, I went and saw another dermatologist.
At that point in my life, I had been to several dermatologists. I was put on special creams, special washes, special moist towelettes that stained everything known to man, I was put on special pills and in the middle of college I finally wasn't on anything. I had taken a break from all the "miracle cures" because nothing had changed. And then boom explosive acne. It was later coined "Tampa made me ugly". My roomies remembered my lamentations over my once beautiful hair and skin being "ruined" by Tampa water. Now looking back, this probably had very little to do with the water and much more to do with a powerful combination of my hormones going crazy and my diet attacking me from the inside while manifesting its anger on the outside.
In 2008 is when I finally took the almighty step of last resort and took
Accutane. Any person who has taken it will shudder and fondly recall their days of blood work, chap stick and whatever side effect plagued them. In short, accutane stops oil production. Well, God made our bodies to produce oil, so it's probably not safe to stop it. In fact, this drug is now off the market because of the harsh side effects and the potential for severe emotional breakdowns (which led to suicide, allegedly, for multiple people). I have mixed reviews on the emotional side. Having horrific acne can bring an ego down much worse than imaginable. People are not kind. Being over the age of 15 with acne made me and often makes me more self conscious than I would like to say.
So a major side effect with accutane is that if you become preggo, you may have a weird, cone head baby. At least that's what the warning was. So it was mandatory to be on the pill. Regardless of my very long conversation with my dermatologist about how I was not "sexually active" because I wasn't married. He was confused and said listen, you have to be on the pill regardless of your life choices because I am legally liable if you have a cone head baby. (lawyers - always the lawyers and the liability)
Enter my origin of this convo: THE PILL. So I started. I was put on Yaz, I think, and did fine. I had no reactions. I did have a period of vomiting for like two weeks, but that went away when I altered my accutane schedule to not mix with my pill schedule. I was not on the pill for any sexual reasons so I was not consistent. I was haphazard at best. And when my accutane time ended, me and my beautiful skin, quit taking the pill.
In 2009, I became engaged. So January of 2010, I went back on the pill so that by the time I was married, I would have a routine and we get where I am going... I was now on the pill for its intended purpose- to prevent a baby. Round one, I was put on
Ortho-Tri Cyclen, lo. It was cheap and I was on board. Until the side effects hit. My side effect was all the veins in my legs swelling, shooting pains in my legs, laying on my couch crying because of how much pain I was in, and wanting to die. I called my GYNO and obviously she freaked, thinking I was in the midst of horrific blood clotting after 3 days. Well, as it weirdly turns out, my mom and sister had the same reactions to anything in the "Ortho" family. So, I had to go back to the doctor and we went for another option: Yaz. I loved it. I had no issues. My acne was ok, never anything crazy. My face broke out, but I had never been back to the cysts.
Well then I moved to Illinois. And was no longer on my parents' Florida Blue Cross/ Blue Shield. Thus, my Yaz wasn't cheap anymore. It was 96 to 110 dollars a month. OUCH. No thank you. So back to the GYNO I went and basically was put on the second cheapest, non- Ortho option, and it was something that started with the letter F and I cannot remember the name. I didn't hate it. But, my mammary glands would swell every month. It was horribly painful. I couldn't lift my arms during my cycle and finally was getting really concerned about what the pill was doing to my body.
During that time is when my periods became unbearable. I was on 500mg to 1000mg of painkillers, as prescribed by my GYNO. At one point, I was put on some narcotic that I couldn't take for more than 7 days because it had a tendency of shutting down kidneys if taken over 7 days. Yeah super comforting. Each time I described my pain, my GYNO would simply pull out the Rx pad and say here ya go. I was getting really ticked off that I wasn't being heard. I wasn't having bad cramps. Something was wrong with me. It wasn't a mild period. It was a horrible experience every 32 days that would make me either useless because I was so drugged at school or work (ps I was in law school and working) or I would have to take a "personal day", where I would be on the couch with a heating pad all day. With each year the periods became more painful. By 23, they were horrible and my body was completely numb to each new pill I was told to take to "help me".
Then there were the random occurrences that started coming all at once: hello facial hair. Oh yeah, chin hairs and jaw line hairs and cheek hairs that are exactly like my husband's beard. Oh yeah that's friggin sweet. I would pluck and they would be back the next day - sometimes thicker and more angry than before. So here I am: ovaries killing me, growing my man beard, acne coming back with a vengeance and with cyctic hatred, when I notice that I have horrible pain in one spot in my lower stomach. All the time. I have an extremely high pain tolerance so I just kept on chuggin. I mean, who can really take off time from life because of pain?
So July of 2012, I decided that this pill crap isn't for me anymore and I stopped taking it. My husband knew my plan and we decided that all the potential harm wasn't outweighing the good. And then we waited. My stomach pain increased. My man beard grew fiercely strong. And I didn't have a period for over 4 months. So began my research...
And I learned about PCOS. And here are the top three symptoms:
- Menstrual abnormality. This is the most common characteristic. Examples of menstrual abnormality include menstrual intervals longer than 35 days; fewer than eight menstrual cycles a year; failure to menstruate for four months or longer; and prolonged periods that may be scant or heavy.
- Excess androgen. Elevated levels of male hormones (androgens) may result in physical signs, such as excess facial and body hair (hirsutism), adult acne or severe adolescent acne, and male-pattern baldness (androgenic alopecia). However, the physical signs of androgen excess vary with ethnicity, so depending on your ethnic background you may or may not show signs of excess androgen. For instance, women of Northern European or Asian descent may not be affected.
- Polycystic ovaries. Enlarged ovaries containing numerous small cysts can be detected by ultrasound. Despite the condition's name, polycystic ovaries alone do not confirm the diagnosis. To be diagnosed with PCOS, you must also have abnormal menstrual cycles or signs of androgen excess. Some women with polycystic ovaries may not have PCOS, while a few women with the condition have ovaries that appear normal.
I had the first two. Or at least I thought I did. So I scheduled an appointment with a new GYNO and was prepared to discuss the possibility of PCOS. 6 days before I went to my appointment, I had the single worst period I have ever had. At some point, I had so heavily drugged myself that I called my mom crying asking her to take me to the hospital because I was dying, and I never remember one moment of that. I cannot recall a time when I was in that much pain. FOR 5 FRIGGIN DAYS. I wanted to die.
I go in to the appointment and explain all my symptoms. How there is something wrong with me far beyond the normal period. My doctor, although nice, says, well, although you seem to have the symptoms, you're not obese. PCOS only happens to obese women. Well, although I am not a doctor, I had done extensive amounts of research. PCOS does occur in larger women, but it's because of an interlocking system of how our hormones are produced. Our adrenal glands and fat levels have a huge impact on our body's ability to regulate hormones. And as previously mentioned in another post, I have major issues with my adrenal glands. Another red flag was that apparently to this MD, all PCOS patients needed to present with the textbook symptoms in order to be diagnosed. Hello, that's not even remotely how the real world works.
So she ordered blood work and a trans-vaginal ultrasound. Ugh and ouch. So I go back to my follow up appointment and she explains that I have elevated testosterone and androgens. I also have a cyst on my right ovary - that spot which had been hurting now for over a year. And then she dropped the hammer: you will not be able to have children or if by some miracle, it will be very difficult to become pregnant, so you need to start now if you want to even have a chance. Wait, what? I was 23. I was just wanting validation that something was wrong with me so that I could fix it. I wasn't ready for that. And the way it was said was so swift. I hadn't had this conversation with my husband. Kids were an arrogant assumption of the future. And I was alone sitting in a room being told it wasn't even an option. Or if it could possibly be, I needed to drop my life and start making babies. No, I couldn't and wouldn't do that. Enter the spiral of the fall of 2012.
My cyst was too small (aka not worth any doctor's time) to remove, but it was wrecking havoc on my body. There is no cure to PCOS, only maintenance. So I was put back on the pill. But because I have such elevated levels of man hormones I was put onto massive quantities of synthetic estrogen. And thus I gained weight. In my gut. Like a pregnant woman. And I cried. About every. stinking. thing. And I still had acne. And I still had painful periods. And I was about to have a lot of serious conversations.
First, I emailed my family. My parents were the only ones to respond. I think everybody else was just too scared or weirded out to ask how I was doing. I didn't expect much, but they needed to know, in the event that this baby roller coaster ever got out of the station, I didn't want speculation or opinions. Then there were the hundreds of tearful conversations with my husband. I felt like a damaged piece of goods. I know Matthew wants kids and I suddenly was the object which was never going to provide my womanly duties. And that is why this post is necessary. If any of this sounds like you, you are NOT alone. You are NOT worthless. You are NOT incurable. You are simply at an impasse and must decide if you are going to be proactive or reactive.
Opening up and talking about PCOS has led me to many beautiful conversations of hope and love. I am fascinated by how many women I am around who have PCOS. This should be a much scarier idea than the average American notes. Hundreds of thousands of women in this country have a disease which jacks up their hormones and makes them unable to produce eggs. Why? Nobody knows according to the MD world. Well, I think we have figured it out. What we put it and on our bodies is damaging them much more than we think.
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The person who loves me enough to heal my body. |
Well here we are in 2014. And my husband, pictured above on our recent camping trip to North Dakota, loves me enough to fix me. My GYNO was upset when I refused to see an endocrinologist. I asked if this specialist would heal me or simply medicate me, and when she replied the latter, I refused. I haven't been back to the GYNO since. Instead, my husband (DC) and I took my health and wellness into our own hands. And here is where we are at:
1)
Diet Change or a cleanse was key. I followed this PCOS cleanse, nearly the entire time, and felt a positive change. Now, I am on a gluten free, dairy free path and I am worlds better. My acne is less noticeable if noticeable at all. My break outs are only happening when I get off the healthy diet path and eat gluten or dairy. I also only buy meat which has never been on any hormone or antibiotic. Expensive option, but really, the only option I have.
2) Reducing the amount of
parabens I consume. I really do not care who disagrees with me on this one. But that giant organ, your skin, absorbs all those parabens. Parabens are known to cause reproductive toxicity and hormonal imbalance. Hello. That's my life. I now make my own "shampoo" and conditioner, face wash and facial moisturizer. I only use 6 ingredient or less hair care products which do not have parabens. I used totally organic and toxic free deodorant. I switched all my makeup to paraben free Physician's Formula. And my skin and hair look and feel better.
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Oil Cleansing supplies |
3) Supplements. My husband wants a baby. He wants one so badly that he has spent countless hours learning how to heal me. Each morning I take the following:
- Black cohosh - to help with mood swings, night sweats, bloating and cramps
- Vitex (chaste berry) - to balance hormones, promote fertility and promote overall menstrual health
- Licorice Root - to help maintain proper hormone production and release, as well as balance my hormones
- White Peony - combined with the licorice root, it performs better, this relaxes my muscles and reduces painful menstruation, while lowering my serum and testosterone levels.
- Evening Primrose - helps to increase cervical mucous & metabolic function
- CoQ10 - this is an antioxidant which almost every cells uses which greatly increases the functioning of my liver, kidneys and heart - aka it takes a lot of stress off my liver and kidneys to filter out the bad
- Vitamin D -helps with immune support and bone health
Each evening I take the following:
- Omega 3 - contains DHA/EPA - good for cholesterol and brain health
- A women's multi-vitamin - primarily picked for the chromium which is good for enhancing my body's reaction to insulin (PCOS causes most women to be insulin resistant)
- Dong Quai - treats symptoms of PMS and menopause, reduces cramping, and liver toxins.
- Milk Thislte - protect the liver and helps detoxify synthetic chemicals from the body
- N-Acetyl Cysteine (NAC) - antioxidant which helps the liver, helps with insulin sensitivity, controls glucose levels, and has been known to prevent cancer of the lungs (added benefit)
- Lysine - boost immune system, reduces anxiety and assists in repairing tissue
- Adrenal pills- this was previously mentioned in my Adrenal blog - these moderate cortisol in my body, as well as regulate my adrenal glands so they properly function.
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When we first started experimenting with my supplements |
So where are we at? Good news!!!!! I am off the pill. I just had a normal menstruation without the help of anything synthetic. My diet, paraben free lifestyle and supplement regime has regulated my body. I am currently still experiencing mild to moderate pain at the site of my cyst. I begin an acupuncture regime next to eliminate that bad boy altogether. My acne is greatly reduced. I basically have eliminated any extra hair growth. I'm almost back "to normal".
There is hope. There is health. And there is wellness. It is not found at your pharmacist in a lovely packaged 28 day cycle. It is found in your food, your products, your choices, and your commitment to the program. We by no means think we are out of the woods. But, we are well on our way to an answer and if God allows us, a baby one day. The good news is that my ovaries are working. I have dropped some weight since coming off the pill, which has been nice. But my goals remain the same: being well is most important. The road to wellness is a crunchy one. It is all about going back to the basics and not eating the SAD (Standard American Diet) way. It's not easy at first. But it does become routine. And your life and well-being are really worth the struggle.
Thanks for reading this super long post. If you have any questions, please feel free to ask!