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:

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,
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:

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


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


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.


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.

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
            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
            Polycystic Ovarian Syndrome
            Chronic Migraines
            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.

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.

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.

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


Pain... I thought You Went Away....

I thought that after I had the surgery for my Endometriosis that the pain would go away with my periods and they would no longer be excruciating. I thought wrong apparently. I just feel so helpless and don't know what else to do. I spend my days it seems like popping pain pills, sleeping the day away and somehow pulling myself up enough to work, when I am able to.
Right now, I have no job. I left in January because I had a fever of 105, and they gave me the choice, my job, or resign and go to the ER. Because of my sick rules with Addisons, and because I was vommitting and lethargic, I had to go to the ER... and so I placed my resignation in after carefully thinking about it. It was tax season, and I could survive for 3 months with no job off of my tax return money. 
And that is what I am presently doing, trying to survive... Its frustrating sometimes because employers don't understand what it is like... when you are a single mother, trying to work full time with chronic health issues and make ends meet. It is frustrating, because its like, if they were in my shoes, then maybe they would be more sympathetic but they are not. So what do they care... anyway, I digress...
So, I had my period. I ended up in fetal position. No pain meds were helping. I wanted to quite literally die. But I couldn't let my child see me this way... so I summoned the strength up and sent a message to the fertility specialist who did my surgery back in October and asked her why I still have pain and if she would provide pain meds...

Her response:
"Well, you refuse to supress the endometriosis. You refuse treatment with hormones due to pre-existing conditions and clotting disorders. You refuse Lupron claiming that its just a patch and chemotherapy which you refuse to take. What do you expect to happen? The adhesion's likely came back because I only did an ablation as I am not an excision specialist. I can refer you to the Chronic Pelvic Pain Clinic and see what they wish you to have done and can refer you to Physical Therapy for Pelvic Floor Dysfunction"

Me... frustrated... 
I thought an ablation got rid of the endometriosis...
I have to wonder what the hell is going on in my body right now...
And pelvic floor dysfunction? Really?
Theres not much difference in what Chronic Pelvic Pain Clinic can do for me...
I already am in physical therapy...
I am already in pain management for my chronic back pain (which has no answer as to why I am chronically in pain but I digress)
What else could they really do? Honestly?

And really? Way to make your patient not only feel helpless, but like shit...
I guess I will just have to do farther research and see what I can do... what my options are...
But until then, I get to live with pain, yay.... not