My Endo Story by Julie McArthur
I was first diagnosed with endometriosis when I was 24. I always had awful PMS and went on the birth control pill at 15 years old, so I didn’t experience the heavy periods that a lot of women with endo talk about. I did, however, struggle with PMS. I remember going to an endocrinologist thinking he would be my savior and help me, but all he did was laugh (!) and say “wow you must have bad PMS.” He put me on a drug called Sarafem which is really just Prozac in a different color. (Take a moment to think about how messed up that is to give a woman a pill that is pink and purple and tell her it will help with her PMS when it’s just Prozac!)
Years and years later, I found out that endometriosis is caused by an excessive amount of estrogen. So back when I was 15 years old at that endocrinologist’s office—he probably could have helped me.
I struggled with a lot of different symptoms, but the most important to me was “unexplained pelvic pain”. I had a dull ache in my bottom left-hand pelvic area which turned worse over the period of about a year. I was in and out of different doctor’s offices, being told different things including this was all in my head and having different procedures done with nothing to be found as abnormal. I remember finding a doctor at Johns Hopkins with help from my mother. In tears, I begged her to do a surgery called laparoscopy (which I had found out was an option on my own). She reluctantly agreed but continued to tell me until the surgery that many women just “deal” with their pelvic pain forever. (Implying: why couldn’t I?)
Thanks to that surgery I was diagnosed with endometriosis and told the follow-up treatment would be for me to take Lupron shots for 6 months and then go on the birth control pill until I was ready to be pregnant. Oh, and after I was done having kids I would have to get a hysterectomy. Wow. That’s a lot for a 24-year-old to take in right after surgery! But I began the Lupron shots as soon as I could. In case you don’t know, Lupron shots put you into menopause right away. It is not a natural, slow, and gradual menopause. It is full-blown which means: hot flashes (you have no idea how bad these are), memory loss (awful) and a slew of other really awful things to experience all at once and at 24 years old.
While in menopause my mother (thank whoever you believe in for amazing mothers) I started to do research because I found out (again, on my own) that Lupron shots were NOT the answer and that something called deep excision surgery with an endometriosis specialist was! Quick reminder that I was 24 going through menopause and working and trying to survive while also trying to figure out what to do next.
We found a handful of endometriosis specialists in the United States who performed deep excision surgery. The surgeon actually excises (removes) the endometriosis until he/she sees clean tissue and then cauterizes the veins. (This is in contrast to ablation surgery that burns off the top of the endo, allowing it to grow back over time.)
I loved my surgeon and his team, and cannot describe how much this changed the experience for me. (They even fought my insurance company for me!) I am so grateful to have found people who were willing to help while I was struggling to get physically and mentally well—and to get coverage!
Although this was practically unheard of in 2007, I was also lucky enough to get dietary guidelines from my doctor. I avoided tofu and edamame, stayed on a whole foods organic diet, and avoided caffeine and processed foods as much as possible. He also urged me to manage my stress.
Since my surgery I have been pretty much pain-free WITHOUT birth control pills. I have had 2 beautiful children. I sometimes notice the dull ache coming back, but when I am conscious of what I eat I am pain-free. Thanks to this entire experience, I decided to study holistic nutrition to really take control of my health.
Here are the things I changed that I believe made the biggest impact on my ability to heal:
- Organic Food – You should try to do everything in your power to eliminate as many toxins and pesticides going into your body. Obviously local and fresh is best, but sometimes you live in an area where that is not possible—it’s okay, go organic. A little trick if you aren’t sure if something is organic: the PLU number (the number on the sticker on the produce) always starts with a 9.
- Processed Food – I know this is super hard for many people, but again the less processed food you eat the less “processing” your body has to do to eliminate excess waste, toxins, and estrogen!
- Caffeine – My biggest challenge continues to be coffee, so I get it. When I am really stressed and I have to just get through certain situations in my life, I turn to caffeine. It’s not easy. If you feel you need some caffeine in the morning try switching to tea. Black tea, green tea or even Yerba Mate (this is strong like coffee but doesn’t give you the crash, though you may need some time to get used to the taste). Also, remember chocolate has caffeine! I know, I know. If you MUST have a piece then do your best to opt for dark, organic chocolate.
There are many supplements out there which can help you as well, but we’ll save that for another post. Thank you for reading my story, and please do not hesitate to reach out to me if you want to talk about it more! There is hope and no one should be going through multiple surgeries or getting hysterectomies without seeing a specialist and getting some support.
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Dr Kanayama’s Website: gynecosurgery.com