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 27^th 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 7^th 2014. She ovulated on or around December 25^th 2013. The patient experienced her second chemical pregnancy on January 17^th 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