Natalie's Endo No More Fund

Hi!  My name is Natalie.  I am 42 years old and I live in Austin, TX.  I am single and I live alone (though not lonely). There is a constant thread that weaves through all of my life's works--  the things that bring the most joy to my life involve sharing with,  helping, and caring for others.   For the last 15 years, I've made my living as a sole-proprietor rehabilitative massage therapist (learn about my practice here ).  In 2010, I as part of the illness I will detail below, I found Tai Chi, and fell in love with it;  as is my usual way, I embarked on a 3 year apprenticeship and became a certified Tai Chi instructor while also earning my 2nd degree black sash.  Prior to both massage and Tai Chi, I earned my 1st degree black belt in Taekwondo and taught adult and kids classes.  Now, in addition to helping my massage clients move and function more freely and with less pain, I work  with students of all ages and experience levels on their journeys to earning their 1st degree Black Sash at Master Gohring's Tai Chi & Kung Fu in Austin where I train and work.  I am also a regular speaker at my massage school alma mater, where I talk to soon-to-graduate LMTs about what it's like to be a self-employed therapist.  I am also a staunch supporter of animal rescue, and I currently sit on the Board of Directors for Ay Chihuahua Rescue , and am loving human to an assortment of rescued four-legged family members.

Are you spotting the trend?  My life is very "Others" focussed.  I enjoy helping.  I can't imagine not sharing things about which I am passionate.  I get tremendous joy out of encouraging and facilitating the growth and exploration of others.  Well, as it turns out, I find myself in a place where it is I who could benefit from some help.  A little help from my friends (and colleagues, and strangers), as it were.  

On July 7, 2015, I will be undergoing a total hysterectomy in an effort to finally end (or at least dramatically improve) the decades long struggle of dealing with advanced Stage 4 Endometriosis . Though my team of surgeons will be attempting to use the DaVinci robotic assistsed surgical procedure, there is a strong chance that due to extensive scarring and adhesions to my pelvic organs, I may end up with an open abdominal incision.  The end result is this:  Due to the physical nature of both my means of employment, I will be unable to work, teach or train for anywhere from 4 weeks up to 8 weeks post-operatively, depending which type of operation ends up happening.  To make matters more fluid, I won't know which procedure I will have had until I wake up in recovery.  I am seeking help in the form of monetary donations from kind souls to help me with medical deductibles, copays, and of course the living expenses I will still incur despite my inability to work.  

For me, on average 30-50% of every month is affected by some form of disease presentation. I want my time back. I want my life back. I want to know what it's like to live pain free-- or if not pain-free, in significantly less pain.

It is extremely hard for me to ask for help-- I am the helper!!  But I have learned through my process and my journey that we all must ask for assistance sometimes, and just like the satisfaction I receive from helping others, I'm hoping there are people out there who might feel good about helping a fellow helper in need.  I pre-emptively thank you, whether you donate, share my campaign, or just send me well-wishes.  I am grateful for any and all. 

For those who would like to know my story, read on:

It's a fact: talking about periods and lady parts isn't always easy.  It's not cool.  It can feel awkward to describe and can be awkward to read about-- especially with people you may not ever meet or know.  Suffice it to say, I always had terrible ones, beginning at age 11.  Turns out, my mother had horrific ones too, and so, it's just what we expected and thought was normal.  It's not like you can try on someone else's to see how theirs compare.  It is an explicitly subjective experience.  Well, mine were anything but normal, as it turns out.  I never missed a day of school or work, though it meant pushing through in incredible agony, or flow so heavy it was diffiicult to leave the house on many a day.  It was just never an option to not function.  So I did. 

Fast forward to 2008.  Yes.  Decades.  I was obviously a pro at dealing with monthly horror, and yet, one night in June I had the most excruciating pelvic pain I had ever experienced, sharp, stabbing, hard to breathe, unable to walk.  Worse than cramps-- this was beyond awful. But, since it went away by morning, I said, "if it happens again, I will get checked out."  Well, it happened again.  In July.  Only this time, it was much worse than the month before.  I feel like if I tried to describe the pain, it would seem too dramatic, but I can say it was sharper and more debilitating than appendicitis-- I know, because I had that last year (and btw, almost didn't go to the ER bc it felt like a pretty normal endo attack).  Worse than appendicitis, worse than post operative pain.  I laid awake in tears, panting from pain.  In hindsight, I should have called 911, but I've decided it was the kind of debilitating pain that prevents one from thinking clearly.   It lasted for 2 days and then finally tapered off, but I was sore and limped for several more days.  This time, I got checked out.  At first, my then gynecologist suggested that I was experiencing GI issues, but I told her that somehow I knew this was female-related.  She was a bit dismissive at first, but ordered testing.  Ultrasounds revealed the unthinkable.  I had 3 baseball sized tumors on my right ovary, and they could be ovarian cancer, or they might be endometriosis.  Won't know until I have surgery.  It was terrifying, as my grandmother had just passed away of ovarian cancer not 4 months prior to this.

I drifted through those two weeks from ultrasound to surgery in a sort of dissociated, adrenaline-fueled, panic-stricken daze.  I was scared but tried not to let on.  I was restless.  I had insomnia.  My dear friends and family tried to keep me occupied and positive. 

In early September 2008 I had my right ovary removed (with the tumors), part of my fallopian tube removed, and extensive lasering of what ended up being the most extensive case of advanced endometriosis that my surgeon had ever seen.  I can't find my surgical pics, otherwise I'd post them here for the non-squeamish.  The best way I can describe what they looked like is to say it looked like someone took an industrial sized ash tray and dumped cigarette ashes into my abdominal cavity.  I had gunpoweder-colored lesions everywhere, and layers of lesions that had scarred over and implanted more.  I had it on and behind my uterus, on my bowel, both ovaries, on my intestines, and all over my abodominal cavity and wall.  Though I had not tried getting pregnant by that point in my life (I was already 35), the damage to my insides suggested that I most likely would not have been able to anyhow.  That was a whole other layer of grieving that I didn't expect to have or to face.  I didn't know if I wanted children, but to be told my body was so ravaged by a disease that the choice would likely not be mine anyhow was a source of much emotion and soul-searching.   My surgeon said she couldn't understand how I even got out of bed each morning.  I told her "how could I not?"  This started Natalie's Endometriosis Journey.  

The conventional treatment of endometriosis is varying forms of hormone suppression therapy.  No estrogen = no period = no new endometriosis.  The extreme nature of my case prompted my doctor to urgently place me on a drug called Lupron .  It was a special kind of hell.  It is bascically chemically induced menopause.  I am not saying all menopause is terrible or that all women have a bad time.  What I am saying is how that drug affected me personally.  That shot went into my butt, and my life felt shattered.  I lost half my hair.  I gained 40 lbs.  My joints ached so terribly I could hardly get out of a chair.  I develped eczema, insomnia, hot flashes, night sweats, memory loss (which never fully came back btw), I even got lost driving myself home on a couple of occasions; BUT, I had no periods.... I was to be on Lupron for 6 months--the maximum time allowed due to the harmful nature of the drug-- 2 injections spaced roughly 3 months apart.  It worked, until it didn't.  2 months into my 2nd injection, I woke up in the middle of the night in agony and hemorrhaging.  Emergency call to gyn practice ensued.  Follow up visit.  More medications, progestin-based, to try to prevent my cycle.  2 years of Depo Provera followed, which wrought further havoc on my already drastically messed-up metabolism and physiology.

Things only got worse, and after 2 years, I was the most miserable I had ever imagined.  I used to participate in triathlons, and now, getting the mail felt like a triathlon.  I was fed up, scared, in pain, my periods were not controlled-- coming in spite of Depot shots every 11 weeks-- I was miserable.  I had a 2nd laparoscopic surgery in November of 2010, where I had more endometriosis lasered, and a lot of adhesions removed.  It was also revealed that my disease had caused my bladder to become adhered to my uterus.  They left that to be dealt with whenever I opted for a hysterectomy. 

That was the end for me in that phase.  No more of that doctor.  No more half-ass surgeries.  No more Depo Provera.  I didn't care if it made my periods come back, I wanted to feel like myself again. 

I went 3 years from that point just trying to cope.  Struggling with my monthly cycles, but happy to not feel like a lab rat, a monster, or insane.  However, the damage to my metabolism continued to increase.  I had always had trouble with holding onto weight, but I had managed to stay steady for over 15 years, until in 2012-13 I watched the scale move steadily upwards despite the active nature of my lifestyle. 

I finally gave in and looked for more help in the Spring of 2013, and found an integrative nurse practitioner who specializes in women's hormone and metabolic issues.  I have been working with her ever since, and have lost 40 lbs, and feel more like myself than perhaps I ever have.  However, the years of continued endometriosis process are always present.  In the years since my last surgery, my pain, has continued and increased, and though I am in perimenopause already, when I do have a period, they are the kind that land women in the emergency room from both pain and uncontrolled flow. 

I have pain with periods, but plenty without, and with no warning it can happen that I will have to close up shop and go home to bed with narcotic pain medication.  I have bloating.  Nausea.  Occasional vomiting.  Stomach pain.  Anemia.  I avoid intimacy because it is painful.  I try not to think about it because it upsets me.  I spend a lot of time telling myself to look for the positive instead of feeling sad or angry.  Thank goodness for Tai Chi, though there are days when even that is more than my body will let me do.

SO!  After much talk with all of my various medical providers, (including my current and totally amazing gynecologist/surgeon), based on ALL the things I have tried, all the trouble I have had, the various medical histories within my family, from endometriosis to ovarian cancer, and all the many things I left out here-- though I know this is very long-- we have all decided that a hysterectomy will most likely give me a tremendous amount of peace.  It will not be without challenges, especially with the hormone implications of removing the remaining ovary, but the amount of pain and suffering I live with on a daily basis is such that even those challenges will likely be a huge step up. 

I know this choice isn't for everyone, but I do believe it is a sound and positive choice for me.  I thank you for reading my story; whether you consider donating or just took it as a chance to learn more about endometriosis and what that means to the millions of women who live with it.  With that, I say again, "Thank you." 

Love and light,
Natalie