July 26, 2010

I’m not sure if any t.v. show out there is ready to tell the truth about treating endometriosis, but sadly many people are being misinformed and improperly treated. About 176 million women have endometriosis and only a small fraction of these women are being treated properly. Most of them live in pain and are not being told the truth. There may not be a cure for endometriosis, but there is an effective treatment that can remove all of a person’s endometriosis and give them their life back with little chance of it returning. However, sadly many women are put on Lupron and suffer devastating side effects and are given repeated laps through laser that only burn off the top layer of their endometriosis. The worst is that women are given hysterectomies and give up the chance to have a child when we know that it is not an effective form of treatment for endometriosis. We have know for years that these treatments aren’t effective and patients return to their doctors devastated and in excruciating pain. So why isn’t anyone spreading the news nationally that EXCISION, by a true endometriosis doctor is the best way to treat endometriosis and can give you your life back. So please have the courage to stand up to all the doctors that are treating this condition improperly and give me this opportunity to share with you and the rest of the world my story so that people at least know there are other options.

I was 25 years old and had been dealing with pain from my endometriosis for about 9 years. It started out as just cramps during my period that would be relieved with the use of over-the-counter medications. It progressed to the point where I was using several types of pain medications prescribed by my OBGYN that barely worked. I just knew something was wrong, something that the doctors weren’t seeing.

I had been suffering from headaches, fatigue and abdominal pain and just knew it all had to be related. However, through all the tests and numerous doctors appointments I was always told that everything was normal. I started to think maybe it was all in my head. I even had a doctor tell me that sex would feel better the more partners I had and the reason why it was so painful was because of my inexperience.

It wasn’t until I started trying to conceive that the doctors began to believe me that maybe something was wrong with me. I did stand out at 24 not being able to get pregnant. I was referred to a reproductive endocrinologist who performed a LAP with laser and diagnosed me with endometriosis, Stage 3. She told me that she had gotten rid of all my endometriosis (later I found out the laser barely breaks through the surface of endometriosis) and that she wanted to put me on Lupron for 6 months. After researching Lupron I knew it wasn’t the right choice for me. If you talk to just about every endometriosis patient that has been on Lupron the pain returns shortly after stopping, so it is only obvious that it is not an effective treatment. The doctor told me that my only chance of getting pregnant was through IVF. She reassured me that endometriosis and miscarriages were not related. However, I don’t think it is a coincidence that many endometriosis patients have had several miscarriages.

After going through IVF, I got pregnant and shortly had a miscarriage. The pain from the endometriosis got so severe I knew that it had to be on my bladder and rectum because I was having so much pain going to the bathroom. My RE reassured me that it was only on my uterus and not to worry. After reading so many stories online and seeing so many women with endometriosis having miscarriages after miscarriages and LAPS after LAPS (with laser), I just knew that somewhere there had to be a better way to treat this disorder.

After researching numerous doctors I came upon Dr. Kanayama’s website. I immediately picked up the phone and spoke to Sabrina, the office manager. After a few minutes of speaking with her I knew I found my answer. She asked me if I wanted to speak to Dr. Kanayama. I was so taken back. I thought to myself he has never seen me before and he’s going to speak to me on the phone now. I can’t even talk to my regular doctor on the phone; they always put me on the phone with the nurses. Dr. Kanayama answered all my questions and explained to me how endometriosis and miscarriages are related, and that the only proper treatment of endometriosis is through excision. I was so excited, for once it seemed like someone knew the answers, so I called my family members to tell them the good news.

My first appointment was amazing. Just sitting in the office and listening to all the stories of what everyone had been through and their successes with Dr. Kanayama was such a relief to finally feel like I was at a place that finally understood me. Dr. Kanayama was able to locate the endometriosis right from the sonogram machine and was able to pinpoint all the areas where I was having pain, just from the exam. That was amazing. In the past I was told that endometriosis could only be seen through surgery, but Dr. Kanayama explained that a doctor would need to have a high quality sonogram machine and be well-trained to detect the endometriosis in this manger, combined with a meticulous pelvic exam to detect endometriosis nodules. He went through everything about the surgery and explained the benefits of his technique, as compared to the way most other doctors treat this disorder. I was in his office for about forty-five minutes and even though his waiting room was full of people he never once looked at his watch or made me feel rushed. He took his time and kept asking me if I had any more questions.

The day of the surgery was wonderful. Greenwich Hospital was breathtaking. I felt like I just checked into a hotel.

Dr. Kanayama diagnosed me with Stage 4 endometriosis. He said the endometriosis was all over my uterus, ovaries, bladder, fallopian tubes, rectum, urethra and intestines. I asked him if he believed that it was just on my uterus when I had the last surgery about 8 months ago like my other doctor said. He said that it was definitely all over everything. He said that he didn’t believe that it could have spread that fast.

I am so grateful for Dr. Kanayama. He is truly a Godsend. He said he had to cut through 5 layers, but he was able to remove it all. He took over 50 pictures, where my last doctor only took 8. The pictures of the surgery were night and day. You can definitely see the success of the surgery from the pictures.

My only wish is that I would have found Dr. Kanayama sooner. I will never be able to thank him enough for all that he has done for me. There is not a day that goes by that I do not think about how he has changed my life and how grateful I am for having the opportunity to be one of his patients. I consider myself one of the lucky ones. There are not many people out there that have suffered from this condition and can say that they are one of the lucky ones. So many women are going from doctor to doctor, surgery to surgery and trying every type of medication out there to find relief from endometriosis. Every day I think of all the women out there, all the ones that are suffering. Some of them do not even know they have this condition because no one is willing to listen to them. It saddens me to think that there are so many people out there that are suffering from this disease; from the physical pain to the emotional pain that it causes. It just baffles me that there is a proper way to treat endometriosis, yet so many people out there are either being misdiagnosed, unheard or treated in a manner that does not alleviate the effects of this condition. I can’t understand why so many doctors burry their heads when it comes to endometriosis; however, I am so thankful for Dr. Kanayama’s determination in finding a way to treat it. The surgery changed my life. Finally, for the first time in years I felt like myself again. Everything went away from the abdominal pain, the fatigue to the headaches. It was amazing just to be able to stay up at night and watch a movie with my husband without struggling to stay awake. However, there was still one part of my journey that I wanted to complete and that was having a baby. After struggling with the decision on how to go about conceiving a child, my husband and I decided to have some embryos implanted that we had frozen prior to my surgery with Dr. Kanayama. I ended up being pregnant with twins after my first frozen embryo transfer. At my first ultra sound I was so nervous, as this ultrasound would determine if this was a viable pregnancy and for me this is where everything went downhill during my first pregnancy. Dr. Kanayama could see how nervous I was. He looked at me and told me that this time it would be different since the endometriosis had been treated and would not affect the pregnancy. Low and behold a few minutes later two heartbeats appeared on the screen. That was one of the happiest moments in my life. It was hard for my husband and I to relax during this pregnancy. After losing our first pregnancy and all the years of disappointment in trying to conceive, we had this fear that that something bad would happen and we would be disappointed again. Dr. Kanayama could sense our nervousness and eased our fears On December 10, 2008 we delivered the boys at 37 plus weeks via c-section. We had informed my doctor of my prior surgery with Dr. Kanayama and my history of endometriosis. During the c-section my doctor actually took my entire uterus out. He told me that he was amazed at how well my endometriosis surgery went. He said there was absolutely no evidence of me ever having endometriosis, let alone stage four. He was absolutely stunned and said it looked like a brand new uterus. He was so impressed that he told the doctors at his practice what a wonderful job Dr. Kanayama did and how amazed he was that after examining my insides during the c-section, that there was no evidence of me ever having endometriosis. I truly believe that if it was not for Dr. Kanayama my pregnancy would not have been a success and I would have continued to have miscarriage after miscarriage like many other endometriosis patients. Every day I look at my two healthy boys and I am so thankful I decided to make that call to Dr. Kanayama’s office back in October of 2007. When I made that call and Sabrina picked up the phone I knew I was in the right place. After all the years of struggling with infertility and the loss of my first pregnancy, I had almost lost all hope that I would ever become a mother. I am one of those people that believes that everything happens for a reason, so when I was struggling with my infertility I could not understand why I was not able to get pregnant. Looking back I now know that if I had been able to get pregnant before my surgery with Dr. Kanayama I would not have been able to be the mother that I am now. The abdominal pain, the fatigue and the headaches would have taken away from the many joys of being a new mom. Never did I ever imagine that the phone call I made one afternoon in October of 2007 would change my life completely. I truly feel blessed to have been under the care by some of the best doctors out there. I am so thankful for everything Dr. Kanayama has done for me.

One of the most upsetting things in going through this process was getting my insurance to cover my surgery with Dr. Kanayama. Unfortunately almost all true endometriosis surgeons are out of network doctors and I only have an HMO that covers in network doctors. These doctors stay out of network due to the constant battles with insurance companies. The insurance companies try to reimburse every doctor that performs a Lap similar rates. A doctor that is out of surgery in 45 minutes gets paid the same for a doctor that is in surgery for 5 hours excising the endometriosis because it is all coded the same as a LAP procedure. The doctors that take the time to properly treat the endometriosis cannot afford to do it when they are being paid the same for their 5 hour surgery as a doctor that does it ineffectively for 45 mins. Most insurance companies don’t care about the difference between a lap with laser and a lap with excision. A doctor not trained to properly excise the endometriosis will leave the patient with endometriosis left in their body and mostly likely in pain shortly after surgery. Insurance companies will pay numerous times for a patient to go to a doctor in network that most likely won’t treat it properly rather than paying for an out of network doctor that can do it correctly. A true endometriosis surgeon will most likely save the insurance company money because the patient won’t have to go back because they are still in pain to have another ineffective surgery repeated numerous times. It is so devastating to be diagnosed with this disorder and then to have to battle with your insurance company. It saddens me to think that so many women can’t have this surgery done because the insurance companies won’t pay. They are then left knowing that there is a way to treat their disorder, but they have to go get it treated improperly because their insurance company does’t care.

So let’s start spreading the truth. I would appreciate the opportunity to appear on your show and to tell women with endometriosis that there are other options. They don’t have to have surgery after surgery, have their reproductive organs ripped out of their body or go on Lupron and suffer the devastating side effects. Let’s show them there is another option EXCISION surgery by a doctor trained to treat endometriosis. Are you ready to reveal another option or are women going to continue to suffer? Thank you for taking the time to read this and together I hope we can make a difference.

Danielle