EAR DRUM

Hey Friendos,

Sorry I have been MIA. I came down with a nasty cold. The germs must be happy here because they are refusing to leave. I went to see my doctor because I was convinced I had the flu. Every single muscle in my body throbbed and ached. Since I've had three hospital trips due to the flu, I didn't want to mess around. Turns out, I didn't have the flu. However, I do have a wicked ear infection. I was shocked since my ear wasn't really bothering me. Plus I haven't had an ear infection since I was a child. Do adults even get ear infections? Apparently, yes, they do. She prescribed antibiotics and sent me home. By the next day, my ear spoke up and it has been driving me nuts every since.

Then a few days later, I woke up to a drum beating in my ear. It's like I can feel and hear my pulse inside my ear. It is terribly distracting and annoying. It also pops & cracks and feels clogged up, similar to airplane ear. And it hurts. In other words, it's no fun at all.

Of course, I googled it right away. I found a disorder called Pulsatile Tinnitus and read accounts from people who have been dealing with this pounding for years. It's a scary thought; I don't know how someone could continue to cope with this problem. So I'm hoping it will go away with my ear infection. (Please, please, please). It's hard to think and write in this condition.

I know how she feels! :(

I am excited for March because it's Endometriosis Awareness Month! I am looking forward to participating, ear problems or not. 

SCENE FROM THE JETSONS

I admit it. The theme song from The Jetsons played in my head while my gynecologist first discussed robotic surgery.

Rosie the Surgeon?

Wait, what? How can a robot perform surgery? I shook the tune from my head and listened to my gynecologist explain the procedure. Suddenly, it clicked. The robot twists and moves with precision in ways a human simply cannot. The high-definition 3D camera sharpens the surgeon's vision with superb clarity. The robot isn't at the controls; the surgeon controls the robot. Genius.

I was "introduced" to da Vinci at the conference two weeks ago. I choked back the lump in my throat as I approached the machine. The anesthesia blocked any memory of the operating room, so it was like seeing the robot for the first time. The victorious robot, my hero.

The rep offered to conduct a simulation. I perched before the powerful machine. My fingers spun the controls, the robot copied my movement. I grasped a rubber band with the robot fingers and lifted it with ease. Success!

I imagined myself on the operating table--underneath the dexterous robotic hands--surrounded by a focused surgical team. Gratitude washed over me.

My robot encounter was an unexpected highlight of my trip. Nice to meet you, my robot friendo. Thanks for being awesome.

I suppose that makes me, "Jane, his wife!"

STANDING UP FOR ENDO

Last week, I had an incredible opportunity to stand up and tell my Endometriosis story. 

I was approached in December by Intuitive Surgical, the makers of the da Vinci robotic surgical equipment, to speak at their sales conference. With my permission, my doctor had shared the details of my severe case and successful robotic laparoscopy. Heather from Intuitive Surgical contacted me and explained their commitment to patients and women's health. Impressed with their mission, I agreed to speak to the 700 attendees.

The conference was scheduled for Florida in January, a delightful bonus of the trip. I grinned as I gazed out the window at the accumulated piles of snow. My husband and I planned our unexpected vacation. We'd travel to Florida on Wednesday, I'd speak on Friday and return home on Sunday evening.

As soon as the holiday rush passed, I focused on my speech. How would I fit my complicated story into the ten-minute alloted time frame? I fussed over each word and practiced in front of my family and friends. My aunt encouraged me to revisit the entire story. I recalled my three unsuccessful laparoscopies and their resulting heartbreak. I relived the agonizing pain and misery my Endo has caused over the last decade. My aunt helped me edit my speech until it popped. My story came alive on the page.

I awoke Wednesday morning to a world covered in white. Heavy flakes fell from the sky in a frenzied parade.

Despite the travel drama that ensued, we made it to Florida by Thursday morning. We arrived at the resort and met with my new friend Heather. I practiced on the stage of the enormous banquet room and prepared to deliver my speech.

Early Friday morning, I shared the brief synopsis of my Endo story with the colossal crowd of strangers--the mistreatment from my previous doctors, the years of searching for answers, the debilitating pain that ripped my life away.

I recalled to them the life-changing moment when my friend (and fellow Endo Sister) referred me to her doctor. I immediately scheduled an appointment. At my first visit, I explained the long, ugly details of my situation. He said I sounded like the perfect candidate for a da Vinci robotic laparoscopy. He was confident he could aggressively remove my endo and stop my pain.

My doctor and the da Vinci robot saved my life.

Surgery is not a cure and my battle with Endo will continue. But my surgery was a miracle. My doctor never could have achieved the amazing outcome without the precision of the da Vinci robot. He removed all of my Endo lesions and fibroids, freed my tangled organs including my bowel, bladder and kidney. He took out my cystic ovary and twisted fallopian tube, which was dangerously growing into my kidney. Attached and intertwined, my organs had been nearly indistinguishable from each other. He accomplished this feat without any damage to my organs. My prayers were answered.

I faced the crowd and expressed my gratitude for their work. I searched for years to find relief from my pain. My debilitating pain had tortured and nearly sucked the life from me. Meanwhile, I unknowingly lived five minutes from my doctor's office and ten minutes from the hospital with the da Vinci robot. I hope and pray my story will help other suffering women and illuminate the possibilities of da Vinci robot for Endometriosis patients in need of surgery.

The crowd rose to their feet in a wave of sincere support and gratitude. I averted my eyes to the floor. Then I looked up to capture this powerful moment in my memory--the sea of smiling faces, the roar of their applause, the recognition of my struggle and the hope for the future of Endometriosis sufferers.

I descended the stage stairs and savored the moment. I'll always remember the kindness and support that radiated from the captivated audience. Many people gathered to introduce themselves, shake my hand and thank me for sharing my inspiring story.

After the conference, my husband and I started our mellow vacation. We soaked up the sunshine and relaxed away the remainder of our trip. We heard Florida was the only state without snowfall that week. I couldn't believe our luck and thanked God for blessing me with this unbelievable opportunity.

The next morning, I opened my eyes and basked in the breathtaking view of the sun peeking over the ocean. A new beginning, a new chapter in my life had begun. The vast horizon represented the untold possibilities of the future--bright, glorious, promising.

I am still glowing from the cathartic experience. I have several ideas to support Endo patients and I'm working on a plan to enact them in my local community. I'll keep you updated on my progress. I believe in our collective power as Endo Sisters. We can stand together to demand better options and research for a cure. This is just the beginning.

Thanks to Heather and Intuitive Surgical for this amazing chance to spread the word about Endometriosis! I sincerely appreciate your work, kindness and hospitality. 

WICKED ITCH OF THE YEAST

My first day home after my amazing vacation, I started to feel the burning symptoms of a yeast infection. Nothing like a yeast invasion to burst your bubble, huh? Wow, did my soaring bubble deflate fast.

This is the fourth occurrence ever for me. I count myself lucky, considering how many women suffer repeat infections. I have a friendo who is her mid-30s who has never had one. Most women are shocked when she states this fact, as they cringe at the memory of theirs.

That first morning, I started out with a homeopathic remedy, including vaginal suppositories & external cream. I tried this for three days. Though it was a seven day supply, by the third day, I was losing my mind & had to try something else (anything else!). So I bought a one-day Monistat pack, including wipes, external cream & suppository. The external cream exacerbated the itchy (my crotch is on fire!) torture. I had to resign to seeing a doctor. But since it was Sunday, I would have to wait one more day. (aahhh!).

My friendo (the never-had-a-yeast-infection and fellow EndoSister) had called me on Saturday to ask if I wanted to hike with her Sunday morning. I revealed my inconvenient, unbearable situation & told her that my vagina may not want to cooperate with her plan. She quickly responded, "well...you tell your vagina that it has ruled this roost for too long & it's time for her to be nice or you are going to start using tampons again." I laughed so hard I thought I'd stop breathing. And Sunday morning, despite the pain, I sucked it up & took a hike with her. I spent that night tossing in agitation, barely sleeping at all.

In the morning, my condition was much worse. My husband called from work to relay some information about banking or bills or something important to me & I had to stop him mid-sentence & say, "Baby, I'm not going to remember anything you are saying. All my brain can think about is how horrific my vaj feels right now. Let's talk about this later, ok?" He was sweet & tried to empathize. Feeling sorry for myself, I spouted something about how I was being punished for having so much fun last week & my loud declaration (& blog post) about how terrific I was feeling. I thanked him & quickly hung up the phone, sparing him anymore of my ranting.

As fate would have it, I then listened to my cell messages & discovered I had a long-ago-scheduled appointment for today (Monday) with my previous OBGYN, that I had totally forgotten about. It feels like a lifetime has occurred since the last time I saw this doctor. She's the one who referred me to dr #2 for my endometriosis. I had been thinking about the importance of contacting this doctor to explain that dr #2 should not be receiving referrals as an endo surgeon/specialist, based on my experiences. And more importantly, who she should/could be sending patients to see for help. The opportunity presented itself to have this conversation, courtesy of my wicked yeast infection. So I took it.

The doctor listened to the abbreviated version of the last nine months of my endo story. (As my brain shouted, vagina is burning!!! Make it stop!) She expressed empathy through it all. I raved about my new doctor (dr #3) & his knowledge & skills as an endo surgeon. I hope & pray she remembers my story the next time she needs to make a referral for a case like mine.

Hence, even my yeast infection has a silver lining.

I suffered through the brief (felt-like-hours) exam. The last thing my vagina wanted was to be poked & prodded. This is always true, but especially in this irritated state. She decided it was safe to say it was a yeast infection & prescribed an oral dose of Diflucan. I had never taken a pill to treat my previous ones, so this was a surprise. I kicked myself for waiting four days to get checked out & find relief.

Twelve hours after taking the one Diflucan (aka Fluconazole) pill, I was already feeling somewhat better. I can actually think about something besides a scorching vagina. So I feel like I'm heading in the right direction on the (yellow brick) road to recovery.

Ding dong, can't wait till this wicked itch is dead!

GOTTA LET IT GO

Today I am focusing on looking toward the future, being happy for today and not dwelling on the past...so much easier said than done.

I had my appointment with the new doctor (aka dr #3) last week. He came highly recommended from a couple friends as a skilled endo surgeon. He gave me a completely different (and much better!) diagnosis than my former doctor, dr #2. He is not hesitant to perform the much needed surgery, my only option to stop my endless pain. I am a great candidate for a robotic laproscopy!

Dr #2 started me on a six month Zoladex treatment in March, by injecting a three month time-released capsule into my abdomen. Dr #2's office informed me after my incomplete laproscopy in February, that this six month treatment was going to cost $3,840, and none of it would be covered by my insurance! I was only able to start the treatment in March because I was hospitalized due to severe pain. After speaking to my patient advocate, she explained a way to cover the medication simply by coding it differently. Therefore, dr #2 not only prescribed a scary drug that I did not need, but I almost paid close to $4,000 (that I do not have) for it!

Dr #3 explained why all this was unnecessary. This means the drug in my abdomen that is confusing my brain into a fake menopause is FOR NOTHING...But I gotta let it all go. All the misinformation from dr #2, who had the nerve to perform surgery on me TWICE that he was not qualified to do. And I have to let go that I ALLOWED him to cut me open TWICE.

After being unable to complete my surgeries and leaving me in severe pain, dr #2 made another shocking decision. He willingly left me with no options to manage my severe pain & just didn't give a shit. He knew that I was in debilitating pain every day of my life; he saw with his own eyes the severity of my situation. And instead of continuing to prescribe the pain medicine that was the only reason I can get out of bed each day, he told me to go to the ER. I gotta let that go too, and it's an incredibly hard one to let go.

I am beyond grateful for the care of the new doctor, dr #3. He doesn't understand why my issues weren't handled FIVE years ago, and I don't fucking understand either!! The very first doctor (dr #1) who diagnosed my endo, she performed my first laproscopy with the intent to remove an ovarian cyst detected by ultrasound. She discovered the extensive endo & DID NOTHING. Instead, she referred me out of her practice to the less qualified dr #2. I had to fight my insurance company for over eight months to cover the surgery because dr #2 was not in network. Five years and three unfinished laproscopies later, I am referred to my new, competent doctor #3. Here's the main thing I gotta let go...dr #3 is in the same practice as dr #1. WHY THE HELL DIDN'T SHE JUST REFER ME TO HIM FIVE YEARS AGO??????????? It would have saved me five years of severe pain, countless hours of suffering, and thousands of dollars. Dr #3 asked this very important question during our first appointment. I hope he asks dr #1, who is still part of his practice, for a damn explanation. But that won't turn back time anyway.

See why it is easier said than done?!

For my own health though, I need to take the lessons learned and move forward. I need to thank God for my blessings and pray for my recovery after the next laproscopy, scheduled in five weeks. I can see a pain-free existence in my future, and nothing else really matters besides that.

Take a deep breath, and let it all go...

DECISIONS, DECISIONS

So many decisions! I am left guessing & hoping that I am making the best ones. I have been looking for a doctor who is experienced in treating severe cases of endometriosis. But guess what? There really aren't Endometriosis Specialists. How is this possible, when so many women suffer from this disease? This is crazy! If I am having issues with my foot for example, all I have to do is look in my provider directory, and wahlah, a list for podiatry. When it comes to endo, you have to roll the dice and hope the OB/GYN you find has the necessary knowledge and experience to treat you correctly. I desperately need a new doctor who will help me.

The first OB/GYN who diagnosed my endo did not have this experience. She performed a laparoscopy to remove an ovarian cyst, and she found the extensive endo. She did not remove the cyst or any of the endo, she did absolutely nothing. She quickly told my husband in the waiting room that I was a mess inside and that she couldn't do anything to help me. How terrible is that?! The sad thing is, I have since had two people recommend her as a good doctor for endo. And one of them was a doctor! Luckily I already know better. But what about the women who don't?

I have been reaching out to other friends with endo and asking for recommendations. I have it narrowed down to two possibilities. A doctor in Akron who helped my friend who had similar issues. Or the Cleveland Clinic doctor who is the expert in endo related surgery, discovered by another friend who works there. I am praying that one of them will help end my pain and suffering. I'm keeping my fingers crossed. And checking one decision off of my list.