Endometriosis Doctors - It's really hard to tell a good one from a not-so-good one

Personally, I really don't know how to tell a good endometriosis doctor from a not-so-good one. There are lots of websites out there that list doctors whom have been recommended by friends and readers. However, not all of the doctors listed are necessarily "experts". In fact, given the uncertainty around what causes endometriosis and how to cure it, I wonder if there are any true experts out there. I've heard that endo doctors in Europe have a leg up on U.S. doctors. Frankly, I have no idea.

I would be most impressed by a doctor who recommended alternative treatments along with (or instead of) the conventional ones and who seemed to have a good grasp and respect for both. So far, my doctor, Dr. Goldman, seems to be aware of alternative treatments, but doesn't seem to have any real faith in them. He, instead, only seems to have true faith in birth control pills, Lupron and other more drastic (less natural) means of dealing with endo. This may be sheer wisdom on his part. He may have seen women trying various alternative techniques throughout the decades with no real results. Part of me feels, however, that he, like most conventional doctors out there, just naturally gravitates toward medical solutions and doesn't put much weight in food, diet, supplements or progesterone cream as being able to accomplish much in terms of curing something like endometriosis. This being said, I did use him for my first surgery and am using him for my second surgery.

I will caution readers against one doctor: Masahide D. Kanayama a practioner in New York City and Greenwich, Connecticutt. This is not because I have proof that he is a good or bad doctor. He may be an excellent endometriosis surgeon. What bothered me so much about Dr. Kanayama, whom I met in person after I saw his name listed on Endo Resolved (a website that I actually think is good in terms of presenting lots of traditional and alternative information on endometriosis) is that he claims to have won several awards as being "the top" or "a top" endometriosis surgeon in the U.S., when in fact many, if not all of the awards are questionable at best. For example:

• He claims to be one of the top-6 endometriosis specialists in the U.S., when, in fact, he is just referring to the fact that he is listed on the Endo Resolved website, which is by no means an authority, and instead, merely lists doctors who have been recommended by readers or pretty much anyone who writes in.



• He claims to have won the awards of "Top 100 Health Professionals in the World in the areas of Endometriosis and Advanced Laparascopy" and also of "Distinguished Service to Humankind Award" by the International Biographical Centre of Cambridge University, England. According to Wilkepedia and other web sources, the International Biographical Centre allows people to nominate themselves for membership. Furthermore, those who pay between $500 and $1495 are offered specially crafted "awards". So essentially, Dr. Kanayama paid the IBC for the the "awards" that he "won" from them and they have nothing to do with merit.

Furthermore, I have met with a few endometriosis surgeons in New York City who have strongly cautioned me against him, telling me that he tells people that they need surgery immediately when there is no need. Also, when I met with him he told me that after his surgeries patients do not need surgery again for five years. There is no guarantee of this - ever - and I believe it was wrong of him to say this to me.

Having met quite a few doctors who treat endometriosis in New York City, I did like Iris Orbuch, who looks very young, but did train under C.Y. Liu and Harry Reich, whom I am told are leaders in the field of endometriosis in the U.S. She has been in private practice for 2.5 years and does surgery at Lenox Hill. I liked when she told me that she would never tell her patients to take Lupron (although almost every other endo doctor I have talked to recommends it). Although I must admit, I do feel that some of her answers regarding birth control etal. were geared toward telling me what I want to hear. I also met with Nabil Husami, whom I liked a lot. He was honest in telling me that I do not need surgery immediately and that surgery should always be the last resort. Not many surgeons say this. Furthermore, he was very current in terms of endometriosis statistics and what seems to work vs. what does not. He is a believer in Lupron, however.

Miraval - A great place to go if you like hormones in your meat

This is my first time at Miraval and I must say that it's a very nice place. I can see why Oprah Winfrey, CondeNast Traveler, Traveler & Leisure and many other publications have rated it so highly.

Miraval's website says that Miraval's mission is to help people bring their lives into balance by learning to live mindfully "based on the art of healthy, inspired living." Accordingly, Miraval offers its clients a variety of classes and wellness services designed to help them learn how to live healthier, more balanced lives. Clients can choose from spa services, classes such as yoga, pilates and meditation, "outward bound" types of physical/psychological challenges, as well as a whole host of other offerings, including cooking and nutrition classes.

I would encourage anyone who can afford it (it's expensive) to visit Miraval, with one caveat. Given Miraval's focus is health and wellness, which encompass nutrition and healthy eating, one would expect that the food that is served here would be all-natural and organic whenever possible. This is not the case. I've been told by some staff members that in the past Miraval did strive to serve its guests only organic or as-close-to-organic food as was possible. It seems this policy changed when the resort was purchased by Steve Case of AOL fame. I am sure that from a business point of view Miraval is saving a lot of money by doing this, but I believe it is doing a great disservice to its clients.

It seems the changeover from organic produce to non-organic was done so quietly that many of the people that have worked at Miraval for years are unaware that it has happened. I would not know had I not contacted the nutritionists at Miraval weeks in advance because of my special dietary needs. I was told that they would be able to procure organic meat for me at an additional charge. I said that I would be fine with just hormone-free meats, but they said that most of the meats and poultry they purchase (including the eggs) have hormones. The kitchen was also able to procure organic yogurt and cottage cheese for me, but the remainder of the guests are not served these products. Additionally, not all of the vegetables served at Miraval are organic.

Miraval is considered the premiere health and wellness destination spa in the United States and, perhaps, the world, and the cost of staying here reflects this. Given the availability of hormone and pesticide-free produce in the U.S. and the resort's goal to promote the health of its clients, I believe it should procure the healthiest food it can for its clients. I'm sure that guests (as, indeed, many of the staff members were) would be surprised and disappointed to find out that Miraval does not make this a priority and would gladly pay the extra $30 a day or more that it would cost to know that they are getting a complete wellness package while they are here, right down to the food that they eat.

(By the way, the resort ended up not charging me for the hormone-free and organic foods they provided me during my stay, which was nice).

Endometriosis - First Diagnosis

I first got an inkling that I might have endometriosis and would need surgery back in July 2006. I had been waking up in pain the middle of the night a few days before the beginning of my period for about 9 months. At first, I thought I was just having period cramps. As the months progressed, the pain became worse, until I finally ended up on the bathroom floor, writhing, feeling as if I would vomit, have a bowel movement and pass out, all at the same time. At that point, I decided to see a doctor. Rather than go to my regular OB-GYN, whom I thought was great for yearly check ups, but perhaps not as sophisticated as these symptoms might merit, I visited Dr. Gary Goldman, a OB-GYN in New York City, who is also listed on certain endometriosis websites as being an endometriosis expert (not that I knew this, or even suspected that I might have endometriosis at the time, I just heard that he was very qualified and very nice).

Dr. Goldman is very nice and has a calm, soothing manner. He has a well-appointed, private office, on east 66th street off Madison avenue (and does not accept insurance). There were two or three women ahead of me for my first appointment. I probably ended up waiting an hour (something I normally never do - if a doctor is an hour late, I just leave), but given the fact I was told that he is very good, I decided to relax my policies on tardiness...

The first half of our meeting I just talked to Dr. Goldman, explaining the progression of my pain, how it was only at night just a few days before my period started, and didn't even occur every month; how I had gone off the pill about a year and a half before after having been on it on-and-off for almost 20 years, and how I had started spot-bleeding about 5 days before my period the month after I stopped taking the pill.

The second half of my appointment Dr. Goldman did a regular pelvic exam and then, did a sonogram, as he has a basic sonogram machine in his office. This is a nice perk as it allows him to immediately get an idea if a patient has cysts or other growths. During the sonogram, Dr. Goldman found a 3 cm cyst on my right ovary. He explained that this was very likely the cause of my pain and that regardless of what type of cyst it was, that it would have to be removed via surgery. This was very scary for me to hear, never having had surgery before and never even suspecting that I might have a cyst down there. He then referred me to a radiology center to get a more sophisticated sonogram (I would never use that center again, but that's another story).

After that sonogram, everything pointed toward an endometrioma. An endometrioma, also known as a chocolate cyst, is generally a cyst that is related to endometriosis. The spot bleeding I had been experiencing before my period since stopping the pill also pointed toward the possibility of endometriosis.

Unlike many woman who have surgery for endometriosis, other than the pain I was experiencing late at night just before my period for about 20 minutes, I wasn't in any other severe pain. My periods were painful, but I didn't think of them as being unbearably so. I was pretty much accustomed to the first two days of my period as being very unpleasant and then feeling pretty good after that. If it had just been based on period pain alone, I would have never consented to surgery. However, a 3.2 cm cyst is another story, and the pain related to that, although relatively brief and infrequent, was extremely severe and debilitating.

I did go on to have surgery and 6 months later my symptoms and cyst returned, but I'll tell you about all of that in another entry...

Welcome to Endo Girl

Welcome to Endo Girl, a blog created to share my findings on improving health and coping with life with endometriosis. This blog is not just intended for women with endometriosis, as a lot of the information I've found can help anyone who wants to be more healthy or is just interested in health-related issues.