September is IC Awareness Month - My Personal Story
In my last post for IC Awareness Month, I spoke a bit about my own IC and why I feel passionate about working with people who have IC. For this post, I am going to focus on my own health story, which involves Polycystic Ovarian Syndrome, Interstitial Cystitis, and some Hashimoto's thrown in for good measure. So sit back, grab a cup of tea, here it goes.
I got my period when I was 14. It never came regularly, but I was told, as many young women are told, that that was normal. In my 20’s, when my period was still not coming regularly, I started to suspect that something else going on. At 23 I was finally diagnosed with PCOS by an OB/GYN. I was devastated. There was something wrong with me! In fact, at that time, she may have even called it Polycystic Ovarian Disease, which made it sound even worse. The only medication she had to offer me was the birth control pill. I had already tried birth control pills a few years earlier for a few months and they had made me very moody, so I declined, and just didn’t do anything.
A few years later, I had a roommate who was concerned for me that I wasn’t getting my period regularly. She had previously worked in a health food store and knew that there were natural products that might be able to help. One day we went to the health food store together, and she showed me how to use the books at the store to look up conditions and their natural remedies. We left the store with several products that had been listed to help with PCOS.
The only one that I can remember was a tincture of blue cohosh (Caulophyllum thalictroides).
I took the blue cohosh tincture for about 3 days, and then I got my period after not having had it for 3 months. I remember the awe that I felt for the plant contained in the small amber bottle, and that my mind was blown by how powerful herbal medicine could be.
Looking back now, it is easy to see that this experience was formative in my journey to becoming an herbalist. And this same roommate showed me something else that was critical to setting me on my path. It was the American Herbalists Guild directory, a small paper booklet (this was the '90's) that listed every herb teacher and school in the country. It wasn’t long till I was on my way to herb school.
The first herb school I attended was the California School of Herbal Studies. It was here that I learned that PCOS is not just a hormonal imbalance, but a metabolic imbalance involving insulin resistance. Again, my mind was blown. As an aside, I lived in a yurt while attending this school, and If you go to the school website, you will see a picture of the barn where all our classes took place.
My next big move was to Maryland to attend Tai Sophia Institute (now Maryland University of Integrative Health) for my Master of Science in Herbal Medicine degree. It was during this time that I finally realized something important about my PCOS. I realized that having PCOS did not mean anything about me. Before this, when I spoke about my health, I would inevitably break into tears when I told someone that I had PCOS. I was still living in the story that something was wrong with me. Once I distinguished the phenomena, from my story about it, I was finally free to address it.
During my 30's I worked with a Naturopathic Doctor who specialized in PCOS. She ordered comprehensive labs and found that my thyroid was off as well. I had Hashimoto's thyroiditis. She told me in no uncertain terms, after doing food allergy testing, that I could not eat gluten, dairy, or eggs. I was ready for the challenge, and I did it. But I do know first-hand how hard it can be to restrict your diet. I also took several supplements and herbs that she recommended.
Ok, you are probably wondering by this point, what about the Interstitial Cystitis? Here is where that comes in. Around this same time, I had been to my OB/GYN and mentioned that my bladder had been bothering me. After discussing the symptoms I was experiencing, she thought it sounded like Interstitial Cystitis. She performed a Potassium Sensitivity Test, and I was positive for IC (translation: the potassium made my bladder feel like it was on fire).
I don't recall if I had discussed my IC with the Naturopath, but I do know with certainty that after being off gluten, dairy, and eggs for 3 months, I was no longer experiencing any bladder discomfort. After 6 months, my thyroid levels were back in balance. And after a year, my periods were coming regularly. What a success story!
Things changed a bit when I got married and started having children. Actually, my health dramatically improved during pregnancy. My skin glowed, the hair on my head was thick, bothersome facial hairs were non-existent, and I could eat anything I wanted seemingly without repercussion (think mozzarella cheese sticks). Even post-partum, things seemed great. My menstrual cycle came like clockwork for the first time in my life, without my having to make any effort.
All of this lasted a good long time, but about 3 years after the birth of my second child, I began to notice some changes. My period remained consistent, but the hair on my head started to thin, my facial hair started to come back, I started to notice some acne, my thyroid levels were out of range, and my bladder started to let me know everything was not ok.
Luckily, I knew what I had to do. First, I knew I needed to attend to my diet. Next, I needed to add some supplements and herbs into my daily protocol. I am doing these things, and it is helping a lot. PCOS, IC, and Hashimoto's are conditions that will probably always need my attention to some degree. The difference now is that I can see my symptoms as my teachers, rather than thinking something is wrong with me. In fact, it could mean that I am an IC Warrior, a PCOS Diva, and a Thyroid Champion!
Here are a few resources that I have found helpful in my own journey:
https://www.ic-network.com/downloads/2012icnfoodlist.pdf - Every individual who has IC will find different foods they can tolerate and those that exacerbate, but this list gives a fairly easy guide to what is most likely to cause issues and what is most likely to be ok.
Interstitial Cystitis; The Effects of Diet Modification - rather than just looking at a list, this article outlines categories of foods and why they can be problematic for IC.
ICawareness.org - this site has all the info about IC Awareness Month and useful Daily Facts about IC,such as New AUA Guidelines - IC/BPS No Longer Considered a Bladder Disease!
ICwellness.org - This website is full of holistic ways to address IC, the podcast is informative and uplifting, and Elisabeth Yaotani's books, How I Got My Life Back and The Complete IC Diet Cookbook have both been valuable to me.
Having trouble with your own Interstitial Cystitis?
My name is Jillian Bar-av and I am a Registered Herbalist and Licensed Nutritionist who works with busy women to help them have the energy to do what they love. I specialize in conditions that affect the reproductive system and urinary tract, such as PCOS and Interstitial Cystitis. I believe that it takes healthy people to create a healthy planet, and I want to make a difference for both.
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