Hiatus...

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The image says it all.
After everything that has happened with losing Avery and my relationship, I need time to regroup my thoughts and focus on myself, my relationship, my health, and my daughter and getting healthy. So, for now, I'm taking a blogger Hiatus, but I'll be back... sometime... just don't know when.

Avery Matthew....

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To Our Surprise, I ended up falling pregnant. 
We didn't expect it to happen that quickly after my surgery for Endometriosis...
We weren't even really trying...

We found out about you on 10/19/2015.
You were a big surprise to us. But we were happy.
We lost you at 7 weeks on 11/5/2015.

There was no heartbeat. No fetal poles. There was nothing.
Bleeding was the reason I went into the OB.
We didn't expect that news from Dr. Kalan.

On 11/8/2015, the hardest part (which is always the hardest part of losing the baby in my opinion) happened. I passed the sac. It was a bubble like feeling, and probably the weirdest sensation. I was just happy I didn't need a D&C. 

It was that day, we decided to name you Avery Matthew. We felt that you were a boy.
It was probably one of the hardest things we've gone through as a young couple.
We felt alone, isolated, depressed.
But you WERE and ARE loved and missed.

So ... I wrote this poem in your honor...

Dedicated To My Son...
Avery Matthew Blau...

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So quickly you came into our lives,
So quickly torn away. 
Never got the chance to meet you,
There's so much I want to say.
Where there once was joy and happiness,
Is now sadness, guilt, and pain.
All these thoughts running through my head,
It's enough to drive me insane.
Though you lived only seven short weeks,
You were loved so very much. 
I wish that I could hold you,
I long to feel your touch.
On that night of November 5th
My world was ripped from under my feet.
I pray that in another life,
We get the chance to meet.
We love you so very much son.
Rest Easy...


(Some of you have asked how Matt is handling things; To be honest, I don't really know, because it is his first child... he seems to isolate himself, be alone and depressed, so I'm not too sure what will happen. Time will tell...)

I Owe My Life to a Doctor....

I owe my life to a doctor, an amazing doctor, and I wanted to share a bit of that journey with you.

A little bit under a month ago on August 9th, I left my last day of work with several feelings. The next day, which would be August 10th, my boyfriend and I started our trip on the long journey from Cleveland, OH to Atlanta, GA via Greyhound. That day, I left for one of the most nerve-wracking endeavors in my life. In fact, if you ask my boyfriend, he will tell you that during the morning of the 10th, I broke down, with anxiety, and had a full-on panic attack because I was so nervous. With the Lord in my heart, and in my mind, guiding me, after much prayer, my journey to become officially endometriosis free had began.

I was blessed to have been able to travel to Atlanta, GA to meet with one of the best of the best, a worldwide renowned excision surgeon by the name of Kenny Sinervo. The hope, that he would give me my life back.

To give you a bit of history: In October 2014, I underwent a laparoscopy to remove, or excise my endometriosis. Unfortunately, the surgeon who performed that surgery was not a skilled excision surgeon, and missed a large amount of endometriosis, and also misdiagnosed my staging.

Many woman with Endometriosis have to live with their pain lifelong, or they suffer. Many woman undergo surgery after surgery with surgeons who are not excision specialists. Many people asked me why Atlanta, and the reason? This doctor could fix me, or that was the hope...

And so our trip began. The day of the 11th was filled with meeting with Dr S. and his wonderful staff at the CEC, and of course, having an ultrasound done, and a pelvic exam done which showed I had moderate to severe pelvic floor dysfunction(which I will be doing PT for as soon as I am cleared by my PCP) lab work done, and the whole routine stuff like meeting with anesthesia, and registering at the hospital for my stay.

That night, I had to have my bowel prep, and let me tell you, I will never drink Gatorade again. Yuck! My poor boyfriend had to force me to drink the Miralax stuff. Before long, I was feeling the results. It seemed like between nerves, and the bowel prep, I was not getting much comfortable sleep that night.

And so, as nervous as we were, we went to the hospital, checked in, and by my side he stayed the entire time. I had previously heard wonderful things about Dr S. I had read and had been told that he would hold your hand until you go to sleep, and that he would pray with you. And he did both! It definitely relaxed me! There are not many doctors who do that, and he did! It felt comforting to know that God was with me during my surgery.

90 minutes seemed like forever to my poor boyfriend, who was waiting updates via pager. While they were in there, they removed my appendix, which was twisted, and inflamed, and all around bad. They got rid of my endometriosis (which was Stage 2) and they took great care of me.

Unfortunately, during the surgery, they confirmed that I have adenomyosis. Adenomyosis, is a condition that is a painful condition of the uterus, which the only cure for is a hysterectomy. So in 1-2 years, I will have a hysterectomy. But he also saved my life. While he was in there, he removed my bad appendix, which was all twisted, and just all around bad looking, and he performed a PSN, or presacral neurectomy, which I believe is the largest benefit, to pain management to pelvic pain sufferers for medical conditions, because thats it. I am PAIN FREE! (with the exception of hormonal migraines, and occasional back pain) but my quality of life has improved significantly~!

I don't really remember too much of the first and second day of the hospital, other than the fact that I was on IV Fluids, given injections of torodol, had to blow into this Pulmonary thingy, and was on a Dilaudid PCA Pump. I think I slept most of it off, but by the end of my second day in the hospital, as hard as it was, I was up, walking laps around the hospital, which was nice.

We were blessed to have spent days 3-6 in Atlanta with someone who is my second mother. I love that woman dearly, and she cares for me, my boyfriend and six year old dearly. It was a blessing to spend time with her, and enjoy her company. It really helped cheer me up.

Post-Op, I was given Perocet. I had a rough battle with it at first, but then realized, I am not really in a lot of pain, and by 11 days post-op, I did not need it at all.

14 days post-op, I followed up with my OB/GYN as directed and she, while an amazing doctor, is not really educated in Endometriosis. She had said some concerning things to me, like that all that was done was a "deep cleaning out" and that the Endo would grow back. Concerned, naturally, I ended up e-mailing my doctor and surgeon and asking him if I would end up having to re-go through surgery and discussing my concerns with him.

Most normal doctors would not write back. Most normal doctors are too "busy" to care about their patients after they are out of their care. Most normal doctors dismiss their patients concern. Not this one. He responded, with a long e-mail addressing my concerns and re-assuring me. I just wanted to take a moment and give a huge shout out to Dr. Sinervo, in Atlanta, GA because not only did he reach out to me, addressing all my concerns, via e-mail, but he re-assured me, and he cared. He took the time to care about me, and not a lot of doctors do this.





Dr S gave me my life back. Since 11 Days Post Op, I have not touched a pain pill. I used to pop pain meds like they were candy. Torodol. Topamax. Percocet. Valium. Dilaudid. Tylenol. Aspirin. Aleive/Naproxen/Naprosyn, Butalbital, Oxycodone, Neurotin, Vicoden, Celebrex, Demerol, LorTab, Fentanyl, Morphine, Keterolac, Advil, and unfortunately, so much more. These are just the small amounts of pain meds, both over the counter, prescribed and narcotics that were used in the past two years of dealing with my Endometriosis flare ups. I haven't touched them. Not one, in nearly one month. I've been pain free, with the exception of a hormonal migraine, which I get each month during my cycles, which is easily resolved with Fioricet, and Flexeril, I've been pain free. PAIN FREE. and I owe it all to the Center for Endometriosis Care, and Dr. S. and his wonderful staff. He gave me my life back!

If you are an Endometriosis Sufferer, please consider a FREE consult with the Center for Endometriosis Care in Atlanta, GA where they will review your records and go over your options with you! Dr. Sinervo gave me my life back. The life that I lived chronic pain with, and popped pills. I thought that was going to be the rest of my life, but Dr. S gave my life back to me, and I promise you, the CEC can help you too!

Insurance... Insurance... Insurance...

 

Bills, Bills, Bills... Right?
What would one expect after having three major procedures performed during surgery.


I just want to take the time to say how very blessed I am for my work insurance, but holy jesus, is medical care over priced in America!

I am so grateful that I have such spectacular coverage through United Health Care and that they are covering the majority of my health care costs, otherwise I would be BROKE and IN DEBT for the majority of my life!


Before I give the breakdown of what my total surgery costs were, and who covered what I just want to make it known what my coverage is:

I pay $70.00 a month for United Health Care for their Choice Plus, Apple Plus Health Plan.
I also pay $106.70 a month through Medicare/Tricare which is my monthly premium, and that covers me for Medicare A, B and D. 
 UHC is my primary. Medicare/Tricare is my secondary.
The way that it works is they bill UHC through my work first, and then whatever is not covered they bill Medicare/Tricare.

Through Medicare/Tricare because I live in the state of Ohio, Anyone who is eligible for disability due to health issues, or prior service military or qualified through the US Government as a Disabled Veteran automatically gets Medicaid as well. 

In the state of Ohio, they combine Medicare/Tricare and Medicaid into one plan. That means if you are eligible for any Medicaid Plans at all, and you have any Medicare plan, whether just Medicare or you are apart of your disability, or like me, Medicare/Tricare, than effective February 2015, you were automatically enrolled in MyCare Ohio, who manages both your plans.

So essentially, I have three coverages. But realistically, for billing, only have two.
I have UHC, and then I have MyCare Ohio. MyCare Ohio manages my disability Medicaid and my Medicare/Tricare coverage.


Next Step... Claims...

So basically, one would wonder what surgery costs me through my really good coverage through UHC and Medicare through Northside Hospital and Dr Sinervo at the Center for Endometriosis Care.

I'll give a breakdown:

Northside Hospital:



Here, you see that my deductible for IN NETWORK is $300.00 and my OUT OF NETWORK is $600.00 of which I have $300.00 remaining to pay. You also see that my OUT OF POCKET MAXIMUM is $4,000.00. What does all this mean?

Well, if you go through an IN NETWORK provider, before they cover you 100% for care, you have to meet a $300.00 deductible, and then they cover you 100%. the same goes for OUT OF NETWORK except it is $600.00

The $4,000 out of pocket maximum also means that the most I would pay out of pocket is $4,000 for medical expenses. As you can see, I've already paid $540.00 this year. Typically this accounts for prescription RX, copays, and deductibles as well as medical bills.

Northside Hospital is IN NETWORK. 

When Northside Hospital billed, they billed $33,488.50 which broke down to the following:


And So I login to MyUHC Portal to see what all was covered:


My UHC Insurance covered ALL but $300.00 towards my two day hospital stay.

I would typically owe $500.00 which would include a $200.00 inpatient admission charge, but it appears that MyCare Ohio, which is my Medicare/Tricare coverage covered the $200.00 inpatient admission charge, leaving me my $300.00 deductible to pay. Not bad at all. I'd much rather pay $300.00 over $33,488.50 any day.

Center for Endometriosis Care / Dr Sinervo

As previously stated, the CEC is OUT OF NETWORK
So how exactly does this work?

Well, today, I spoke to Dr Sinervo's biller.
She said as follows:
The max that they bill for insurance is $16,700. That is the total cost of my surgery. 
She explained that my maximum that I could possibly owe is $10,000, and that they would write off the $6,700.00 and that my insurance will cover 70% of the $10,000. 
So I could only possibly owe them $3,000 from insurance to the CEC.

Thats not accounting for the $700.00 credit I will have, so technically, I will only owe them 2300.00.

Realization:
That seriously is not bad at all, considering the total cost, in network and out of network for my surgery was $16,700 + $33,488.50 totaling $50,188.50  of which I only get stuck paying $2300.00 for since I've already paid $1000.00 to the CEC, which includes a $600.00 deductible ($300 of which I am left to pay, so I have a $300 credit, plus the remaining $400.00)

REAL REALIZATION
The Cost of Healthcare is INSANELY EXPENSIVE in the US! 

So thats pretty much it. 

Endo and Recovery from Surgery

If you've been following this blog and my journey thus far, you'll have read by now that I have Endometriosis and was traveling to Atlanta to  meet with Dr Sinervo and undergo surgery.  So when this post was posted, I laughed.

Anyway, I wanted to make a follow up post to my previous posts going over surgery pre-op, post-op ect. and all the details so that those reading my blog can understand what I underwent.

Leaving Cleveland going to Atlanta:::
Packing was uneventful. I was stressed. Worried about my short term disability and job security with Apple and freaking out about everything because I just wanted things to go as planned.
Ultimately, we left Cleveland the 10th around 2pm, and arrived in Atlanta Monday Morning the 11th. It was an uneventful Greyhound bus ride. We went from Cleveland to Columbus, Columbus to Cincinnati, Cincinnati to Louisville, then stopped in Nashville, TN and Chattanooga, TN before finally arriving in Atlanta, GA.  On the trip down, my boyfriend and I quickly learned to bite our tongue and do what we are told, because some of the Greyhound bus drivers are assholes.  We also learned quickly, that the heat in Atlanta is VERY different. It had only been two years since I had been in Atlanta, but I definitely didn't remember it being as warm as it was.

Arriving in Atlanta::
When we arrived in Atlanta, we got our bags, and got MARTA week tickets, and took the MARTA to Sandy Springs from Gwinnett Station. We walked 11 minutes from our MARTA station to our hotel, and they let us check in early. My amazingly supportive boyfriend ventured out to go get food while I waited in the hotel cooling off. Once he got back, I ate my last real meal, and then started the nasty liquid laxative diet. (Gross, and I'll get to that) and we went to meet with the people at the Center for Endometriosis Care.

At the CEC (Center for Endometriosis Care):::
The building that the CEC is in, is quite confusing. We walked to the office, but I started to feel dizzy from heat exhaustion. I couldn't find the office, it turns out they were on the second floor or something to that affect. We called the office, and a very nice office assistant stepped outside and looked for us, and guided us to their office.

When I showed up in their office, I started with the typical paperwork. Things like medications I've taken and consent forms and whatnot, and they took a copy of my power of attorney, which Matthew was, so that he could sign for things medically, and speak on my behalf and make decisions if things went bad.

I was taken to meet with Dr Sinervo. He seemed like his job involved a lot of paperwork. He sat at his office chair, signing forms and such. He told me that my Endocrinologist who had cleared me for surgery wanted me to stay an extra day in the hospital, so I would be there for 2 days. He asked me questions about how many pregnancies, pain levels, first periods, basically any OBGYN history of the sort, and then told me he wanted to perform a PSN or Presacral Neurectomy when he was in there, which meant he was cutting apart of the nerve. So that was in addition to the excision of the Endometriosis, and this would aid in pain management during my periods. 

After he met with me and went over basics, I was taken to a room, where they did an ultrasound, and gathered urine. He did a vaginal exam and pressed certain areas and told me that I had moderate to severe pelvic floor dysfunction and that they would mail me xanax suppositories to place up inside of me to relax the muscles and that two weeks post-op I would start them and then I would work with a pelvic floor Physical therapist to regain strength in these areas... I remember thinking to myself, Xanax for my Vag? Wow... lol. 

Pre-Op at Northside Hospital:::

So after my stuff at the CEC, we rushed over to Northside Hospital to meet with Anesthesia, go over consent for that, and do pre-op stuff. The Anesthesia nurse basically told me that they were giving me a drug to put me to sleep, and then they were putting tubes down my throat that would breathe for me while they were performing their procedure. That was interesting, because I near about went into a panic attack when she told me this. I literally said "Wait what? I've had surgery how many times before? 2 Carpal Tunnel Surgeries, 2 D&C's, 1 Laparoscopy, 2 Tonsillectomies, and 1 Adenoidectomy, and no one has ever told me this before, why?" and the nurse looked confused at me and said "I am sorry, I don't have the answer for you, but you will be fine" and I said "Oh okay, so effectively, you will be killing me, then bringing me back to life" and she looked at me and said "Uh... not exactly, but the medication can stop your breathing so we need to breathe for you" and I basically looked at Matt confused again, and he looked at me and said "Babe, it will be fine" and then we signed consent forms. We then went back down to registration, gave them my insurance card, which was the United Health Care and expected a $200 deductible, but because I also have Medicare, she took that and told us that she would run that and I would likely not end up paying anything, that the most out of pocket I would pay is $500.00 which is my $200 inpatient admission deductible and a $300.00 in network deductible, which is awesome, because the rest will be 100% covered which is totally awesome.

Bowel Prep

So I knew that the bowel prep would be disgusting, because no one really likes drinking miralax and Gatorade together, but what I didn't know was that my boyfriend was going to literally have to make me drink the stuff, because I am stubborn. I cried and told him "I dont want to drink it, its yucky" and he said "Baby... you have to drink it. I know its yucky but if you dont drink it they wont do the surgery" and so down I drank 64oz of Gatorade and Miralax... and yep, about maybe two hours later, landed in the bathroom. I think in total, I spent around two hours in the bathroom. Grossest thing ever, but I am greatful they require it because without this, they wouldn't have realized how bad in shape my appendix was.







Surgery Day

So we woke up at 5am to be at the hospital, and everything went pretty quickly. We got to the third floor, and they gave my boyfriend a pager and explained that the doctor would be in contact with him, and Mama Carolyn during the procedure. That the pager worked anywhere in the hospital but outside the hospital it didnt work. They took me back to my room, took my vital signs, and then gowned me and asked me what procedure I was having. They gave me a patch called a Scopalamine patch and something to relax. They gave me my morning medications, and then they started my IV. I remember kissing my boyfriend before they took me back, and I was pretty nervous, and told him I loved him very much, and then the last thing I remember is laying on the table, them saying theyre giving me the medicine to put me to sleep and I was out. The procedure was about 90 minutes long.

I quite literally expected Dr Sinervo (the surgeon who operates and runs the CEC) to go in and find little to nothing... At least not find MORE than what was found a year ago... He went in there and found way more endometriosis and he got rid of it all via excision. He even got rid of a terribly bad appendix that if not found in the near future would have ruptured and killed me. He said something like my appendix was badly scarred and torn and had adhesion's all over it. He removed that. And he did a presacral neurectomy (I think thats what its called) on me where he removed part of the nerve so that pain and my outcome overall is better as far as pain management in addition to the platelet rich plasma therapy which helps healing a lot better/quicker, so I feel extremely blessed to have been able to travel and take the time off from work to go to Atlanta and meet with such a skilled surgeon.


I don't really remember much post-op other than sleeping a lot, and pressing the dilaudid pain pump. I remember them giving me injections of stuff, but I dont remember what. 


I was in the hospital for 48 hours but I came out feeling better than I have in my entire life... Today is 6 days post op, and I am a bit sore. Days 3 and 4 were hell on earth, but I am doing a lot better overall. It frustrates me like no end that we have to go through so much because of endometriosis, adenomyosis AND to top it off PCOS too!

I plan to come back a year from now and get a photo and get seen post op with Dr Sinervo. I don't usually trust male doctors but Dr Sinervo changed that outlook.





Nerves....

Last night, I got my plans finalized for my surgery in Atlanta with Dr Sinervo and so many things are running through my head...

My boyfriend Matthew and I will be leaving August 10th via Greyhound and arriving in Atlanta the morning of the 11th. 

We will take a MARTA to the Center for Endometriosis Care to meet with Dr Sinervo at 1pm. Than I will meet with Anesthesia at 3pm at Northside hospital. 

On the 11th, I am on a pure liquid diet, and I will have to do a bowel prep (yuck) but it is apart of the surgery prep. 

My surgery will take place the morning of the 12th at 7:15am, which means we have to be at Northside Hospital for 5:15am. 

We have a hotel, at the Microtel Inn and Suites from the 11th until the 14th. From the 14th to the 16th, we will be staying with a family friend of mine who I consider a second mother, and then we will be returning via Greyhound, leaving on the 16th and arriving in downtown Cleveland the 17th. 

Last night, I also realized just how nervous I am about my surgery. So many things going through my mind. 

Because of my nerves lately, I have unequivocally become more anxious and moody. I was able to finally express to my boyfriend last night all of my fears and told him just how scared out of my mind I am. 

Things like: What if they find nothing? Than no answers for my excruciating pain. OR What if they find a lot, than my hopes of children in the future is destroyed. OR what if the worse happens, and I bleed out, or I develop a blood clot in my leg that travels to my lungs again ect. ect. 

Its been a painfully long journey with endometriosis, and so I have several thoughts running through my mind...

Surgery Date!

I got this in my e-mail today, and I am excited, happy, and nervous. 

Dear April,

Thank you for choosing us as your health care provider.  A great deal of work has now been done by our team to ensure that your surgery will be performed without any unexpected administrative inconveniences or surprises. 

Your surgery has been scheduled at the Northside Hospital 3rd Floor Surgery on Wednesday August 12th 2015 at 7:15am. Please arrive no less than 2 hours prior to your scheduled surgery time  5:30am.  Their telephone number is 404-851 8000.   

Before your surgery you will need to see Dr. Sinervo for your preop appointment at his office on Tuesday August 11th @1:30pm. You will be signing your consent forms and discussing your procedure with Dr. Sinervo.  Please jot down any questions you may have so you can discuss them with him at this time.   Following this, you will meet with Anesthesia AT Northside Hospital, at 3:00pm. You will need to provide us clearances from your Endocrinologist, and Hematologist.

We have been in contact with your insurance carrier and have been given the following benefit information.  You  can expect them to pay 70% of usual and customary fees after you have met your annual deductible of $600.00.   This means that you will be responsible for the remaining balance of 30% and any deductibles which have not been met to date until you have satified your out-of-pocket limit of $4000.00.   

You will be expected to pay $500.00 at the time of your pre-op visit, pluse your deposit of $500.00 will equal $1000.00.    
(Yes this means I will be paying $1000 out of pocket! Not including Hotel and Travel!)

If you have any questions please call me 770-913-0001.  

Unfortunately, we will be required to cancel your surgery if you do not (1) send in the $500.00 surgery deposit to secure your surgery date at least 21 days in advanced, (2) follow through and bring your payment at the time of your pre-op appointment once these arrangements have been made & agreed upon.

I have included a list of medications to avoid taking two weeks prior to surgery.  If you are currently taking any of these medications, please let me know so I can review them with Dr. Sinervo  

If you have any questions please feel free to contact me at the above listed number.  Since the majority of our patients reside out-of-state and will probably not get to see Dr. Sinervo after surgery, it would be to your advantage to bring a small tape recorder with you so that your family member can tape the postop conversation with Dr. Sinervo explaining your surgical procedure.

So that we can keep your preop appointment as efficient as possible and avoid any additional waiting time, I am enclosing a packet of forms for you to complete and bring back with you to the preop visit.



Sincerely

Jean Williams
Surgical Care Coordinator

Hope....

There is hope... with hope, there is everything. I've learned this the hard way.
I started my new job with Apple, as an At Home Advisor on April 6th, and opted for their insurance, which is through United Health Care. Through UHC, there is a $600.00 out of network deductible, and $3400 co-insurance. I am unsure what this means, but I e-mailed Jean to re-go over everything.

Later on that day....

My insurance will cover 70% of reasonable costs.
The hospital is in network.
I need to come up with $1000.00 which includes the $600 deductible, and $400 towards the office.
 Jean is going to call me in a few days to schedule a surgery date.

Jean from CEC Called Me, Unfortunately not good news....

So today, Jean, the financial coordinator for the Center for Endometriosis Care in Atlanta, GA contacted me to go over pricing for everything.
Unfortunately, my insurance, which is Medicare, is not accepted, so I will be an out of pocket patient.
I am crushed. How am I going to come up with $3000 to pay as a down payment, when I am out of work? I guess I will have to wait until next year for tax returns for surgery. Oh well, I am crushed...

An E-mail from CEC!

Today I got an e-mail that shows that the CEC got my records from the doctor. The e-mail was as follows:

April,
This message is to inform you that Dr. Albee has given us your records.  You will receive a call from Jean in approximately 14+ business days to discuss surgical cost and a surgical date. 
I know this is a long time to wait but please be patient with us.
Thank you,
Beth 
 
Center For Endometriosis Care
Ken Sinervo MD & Robert Albee MD
ph# 770-913-0001
fx# 770-913-0005 

xD I am really excited. I cannot wait for this phone call.

Contact Made!!!

So I spoke to Robert Albee this morning, the founder for Center for Endometriosis Care in Atlanta, GA who is taking and reviewing cases for Dr Kenny Sinervo (the guy who does the surgeries) and we are going ahead with surgery. 

He said my history is very suggestive of "adenomyosis" and that while I had the surgery in October, it looks as though they likely did not get deep enough to remove all the adhesion's. 

They are going to be re-doing a diagnostic lap, removing adhesions, removing ALL my endo, and looking/confirming/treating the adenomyosis. 

He did say that the CEC has only had one case in all the years of treatment that has had the endometriosis return, and so I am confident this is the right decision. 

He said they will remove any adhesion's found on my uterus also, because this could affect my adenomyosis, and he said he is very sorry for all my losses (8 miscarriages, and 1 stillborn) but that he is happy I have 1 miracle baby. 

He said the next step is in about 2 weeks I will get an e-mail to start the paperwork for the administrative side of process. 

I will be asking for a July or August surgery date because I want to ensure childcare for my daughter is secure. 

He said if it is confirmed to be adenomyosis, this combined with the endometriosis could be the reason why I have had so many losses. I feel relieved. But I'm nervous at the same time. Knowing this is going to be the last time I will have to deal with this, makes me excited.

A New Hope...

After my frustrations with the doctor and refusing both Aygestin (Birth Control) due to Hematologist saying no, its not an option due to it saying on the label if you've ever had clots to not take (I had a DVT/PE in 2011, and I also have FVL Heterozygous, a clotting disorder)  and refusing Norethindrone (another type of progesterone only birth control I guess) and straight up telling the doctor that I refuse Lupron or any birth control, and her making me feel like I was nothing, I did several hours of research and came across Dr. Sinervo and the Center for Endometriosis Care.

Some things that patients have said about this doctor:
http://www.centerforendo.com/references.htm

So I figured, what do I have to lose, but to send them my records. 
I had previously registered as a patient of theirs in November of 2014 anyway, so they had my information on file, and they were just waiting for me to send my records for review.

I took it upon myself to send a lengthy narrative, and my records from surgery in October of 2014 and my post-operative reports along with my follow-ups with the doctor and ended up sending my records today, and I hope to hear something from them soon. I will update when I hear something.


Here is a copy of my Narrative Report (So People can see an idea of what to send):


Narrative Report

Demographics

Patient: April Marie Driesse, DOB: 09/26/1989, Age: 25 years 4mos
Address: (input your address here)
Phone Numbers: (input phone numbers here)
Height: 5ft 4 inches Weight: 232lbs
Date of Narrative Report: 02/09/2015


Summary:

The patient is a 25 year old female who has been surgically diagnosed with Stage I Endometriosis in October 2014. The surgery was done on October 27th 2014 at Fairview Hospital in Cleveland, Ohio. The surgery that was performed was: 1. Laparoscopy 2. Dilation&Cutterage and 3. Hysteroscopy. Diagnosis was made via biopsy. The patient was 25 years old when diagnosed. No hysterectomy performed.  No negative laparoscopy, as this was the patient’s first laparoscopic procedure. No prior surgeries were ever performed to treat Endometriosis. 

The patient was “diagnosed” with Endometriosis via an Emergency Room Visit per her medical records. Prior to the surgery, the patient had been living in excruciating pain at the time of menses. Patient described that no medication would help, and she would often curl into fetal position and become immobile, lying in bed for days at a time, until menses lapsed. 

The patient explains that surgery was done in October 2014, and that by February 2015, symptoms had returned. The patient was offered prior treatment on Lupron and Aygestin but declined. Lupron’s affects were far too risky, and patient was not comfortable taking this drug. Aygestin was prescribed, but patient refused to take due to the bottle stating “if you have a clotting disorder or have ever developed a blood clot, you should not take this drug” as patient had a DVT/PE in her left leg and lung in April 2011, so patient is not on any treatment for Endometriosis. 

The patient understood that without treating the endometriosis with birth control such as Depo Provera, or Aygestin, or Lupron that the Endometriosis would come back and the only way to remove the Endometriosis is via Laproscopic Procedure. The patient believes that her Endometriosis was not excised completely, and that the Endometriosis may have grown back in the five short months due to inability to treat and wishes to have a second opinion.

History

The patient describes her period first started at the age of seven, and was very heavy and painful. By the age of eleven her periods went away all together. Farther testing being done through New Hampshire Hospital showed that the patient’s LH levels were abnormal and follow-up by an OB/GYN was recommended. 

The patient was then diagnosed with PCOS, and placed on birth control pills (Lo-Orval) for years to maintain her painful menses. The patient was not definitively diagnosed with Endometriosis until her Laparoscopy in October 2014, so the patient went from 2000 to 2014 without being diagnosed and treated. That is fourteen years. The patient saw multiple OB/GYN’s in that period of time, none seemed too concerned with her level of pain that she was in and called it “normal”. There is no known family history associated with endometriosis. 


Pregnancy / Contraceptives and Relevant History
-        2000 to 2007: Lo-Orval
-        2007 to 2009: Lapse in Birth Control
o   *Patient had no insurance and became pregnant*
§  In September 2007, Patient had first miscarriage at 5 weeks. Unknown causes.
§  In Dec 2007, patient conceived a child who was born still on 2 May 2008 and the result of a partial placental abruption and HLHS
§  In July 2008, patient had a miscarriage at 6 weeks. Unknown causes.
§  In Nov 2008, patient found out she was pregnant again, and this child was due July 2009 but Born in June 2009.
·        High Risk Pregnancy
·        Followed Closely through Bedford Commons OB/GYN and Family Health centers of SWFL/Maternal Fetal Medicine of SWFL
·        Child Delivered at 36 weeks 5 days / 34 weeks 5 days Gestational age
§  In August 2009, patient had another miscarriage at 4 weeks. Unknown causes.
§  In September 2009, patient was placed on the Mirena IUD
§  In April 2010, IUD Dislodged, Pregnancy Occurred, Miscarriage at 6 weeks.
§  In June 2010, Paraguard IUD Inserted
§  April 2011, DVT/PE, Spontaneous.
§  August 2011, Paraguard IUD Dislodged, Pregnancy Occurred, Miscarriage at 6 weeks.
§  Decided to give Mirena IUD one more try after persuasion from an MD. (Even knowing that I had a DVT/PE in April 2011)
·        Mirena inserted in November 2011
·        Mirena IUD Removed in April 2012 for TTC Purposes
§  Not on any form of birth control since April 2012.


Fertility Drugs / TTC
§  Clomid Started in January 2013
·        50mg – Annovulation
·        100mg – Annovulation (Feb 2013)
·        150mg – Annovulation (March 2013)
§  Femera Started in April 2013
·        2.5mg – Annovulation (April 2013)
·        5mg – Annovulation (May 2013)
·        10mg – Annovulation (June 2013)
·        12.5mg – Ovulation (Bad Egg) (July 2013)

A pregnancy occurred as the result of ovulation on 12.5mg of Femera in August 2013. In August 2013, the patient got a positive pregnancy test, followed by a declining beta. The pregnancy resulted in what is called a “chemical” pregnancy.  There was no more fertility drugs issued at this point. The patient decided to give up TTC (Trying to conceive). 

The patient fell pregnant on January 7th 2014. She ovulated on or around December 25th 2013. The patient experienced her second chemical pregnancy on January 17th 2014 at 5 weeks 6 days.

It was determined that the patient had Factor V Leiden Mutation and was heterozygous. It was also determined that the patient had MTHFR A1298C Mutation. Both of these combined with hormonal and auto-immune conditions were to blame for the patient’s lack of ovulation, as well as the lack of sustainment of a pregnancy. The patient DOES want future children and states she would like 1-2 more, but she has given up on trying for right now. (6 miscarriages, 2 chemical pregnancies, 1 stillborn)

As far as holistic efforts go for the patient’s endometriosis, the patient has tried heating pads, naturopathic medicine to consist of acupuncture, massage therapy and chiropractics, as well as traditional Chinese medicine. Nothing helped long term.

Diagnoses
This patient has a long list of medical diagnosis. The following are her diagnosis and the providers who follow her.
            Past History of Deep Vein Thrombosis
            Past History of Pulmonary Embolism
            Female Infertility
            Chronic Kidney Disease – Stage II, Controlled
            Fibromyalgia
            Hashimotos Thyroiditis (Auto-Immune)
            Addisons Disease (Auto-Immune)
            Vitamin D Deficiency
            Chronic Back Pain
            Primary Hypercoagulable State
            Past History of Pleurisy
            Post Traumatic Stress Disorder
            Generalized Anxiety Disorder
            Borderline Personality Disorder
            Diabetes Type II
            Hypothyroidism
            Obesity
            Polycystic Ovarian Syndrome
            Chronic Migraines
            GERD
            Anemia
            Past History of Acute Myeloid Leukemia (In Complete Molecular Remission)
            Factor V Leiden Mutation, Heterozygous
            MTHFR Deficiency and Homocystinuria
            Myalgia and Myositis
            Bilateral Carpal Tunnel Syndrome
            Lumbosacral Spondylosis without Myleopathy
            Cervicogenic Headaches
            Sacral Illiac Joint Dysfunction
            Brachial Neuritis or Radiculitis
            Endometriosis – Stage I

Followed By:
1.      Vivian Chukwuani – PCP
2.      Leila Khan – Endocrinologist
3.      David Krahe – Orthopedics
4.      Christy Samaras – Hematology/Oncology
5.      Julie Tan – Reproductive Endocrinology Infertility
6.      Viet Nguyen – Dermatology
7.      Apostolos Kontzias – Rheumatology
8.      Pasha Saeed – Pain Management
9.      Colleen Raymond – OB/GYN
10.   Natalie Evans – Vascular Medicine
11.   Tanya Wagner – Physical Therapy
12.   Kripa Kavassari – Urology
13.   Luzma Cardona – Neurology
14.   Jen Walters – Counselor * Mental Health
15.   Dr Bernard – Medication Management * Mental Health

Pain Management
For pain management, the patient sees Dr. Pasha Saeed. The doctor prescribes the patient the following: Tramadol 50mg, Lidocaine 5% patches, Topamax 100mg, TENS Unit, Cyclobenzaprin 10mg, Fioricet, over the counter medications such as Tylenol, Motrin, Ibuprofin, and the patient does physical therapy in the water as well as nerve injections. The patient also uses a heating pad and in the past has used controlled medications such as Percocet and Hydromorphine. The pain regimen is not really affective, but the patient utilizes and tolerates the pain.

Quality of Life
The patient reports trying to lose weight, to better her life, as well as her health for the purpose of her daughter. The patient reports that menses are still very heavy and painful, and the pain is back to a 10/10 whereas last month at the follow-up appointment the pain was gone. The patient states “it is like the pain came back with a vengeance” The limitations that this pain has is it affects the patients mood. The patient has been depressed because her pain level is high. The patient reports that nothing is working and she is frustrated with her pain level. It affects her social life and her relationships because when she is in pain she becomes more irritable and hard to be around.

Symptoms
The patient reports the following symptoms: Chronic pelvic pain, Chronic low back pain, Cramping, Infertility, Painful Menses, Painful Sex, Painful Urine and Bowel Movements, Trouble going to the bathroom (Can’t go but have to). The only abnormalities reported by a healthcare provider recently is that the Thyroid Meds needed to be adjusted.

Frustrations
The frustrations relating to this disease are the chronic pain that the patient lives in. The patient also reports frustrations because doctors do not properly treat endometriosis around where she lives. The patient states that she is frustrated because she cannot be on birth control due to her past history of clots. The patient wants more children in the future, but because of her endometriosis and infertility it makes it hard to conceive. The patient is frustrated with her body and wishes it would just work for once. She feels that her body has rejected her and she cannot do the one thing a woman should be able to do. She states that she feels as though when her periods come she dreads them. She just wants her Endometriosis REMOVED ENTIRELY so she does not live in this pain anymore.

Conclusion
The patient has tried multiple remedies. Her Endometriosis appears to have come back within five months. The patient really wants a second opinion from an Endometriosis Excision Specialist to see what options she has for treatment and getting rid of her chronic pain and her endometriosis. Please evaluate and review the patient’s medical records as well as the narrative and the attached and help her.

Thank you in advance