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How do I locate an Endo specialist in my area?
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How do I locate an Endo specialist in my area?

I currently am living in the southern Illinois area,between Springfield IL and St. Louis MO. , but closer to STL.  I have had endo for over 7 years now, and I have had 10 Laps (used to be every 12 months, now it has to be done almost every 6 months because it has gotten so much worse) and the last Lap showed that this has been the worst case yet, and now the Endo has spread all over more of my female areas, and now including my bladder.  Since before my last lap, I have had a severe UTI (never had them before) and am now seeing a Urologist for this problem.  But the Urologist is telling me, that all of my problems are probably related to my Endo.  My current OBGYN who does all of my Lap surgeries, is basically telling me that there are no other doctors who can do anything different than what he has already done to me 10 times now.  I find this hard to believe.  I am only 30 years old, only have 1 child, and I am not in any way, ready to have a total hysterectomy, because I would someday like to have another child (just not anytime soon). Even if I did have a hysterectomy, it doesnt seem to me, that it would make sense, considering my endo always comes back, and how would I know that it wouldnt still come back in other places like my bladder?

I do not know anyone with Endo, nor does any of my friends or family even remotely understand what I am, and have been going through.  I am hoping someone on here will know something, and be able to help me understand this disease a little more, and maybe help me find a good specialist, who can finally get rid of this monster disease forever.  Can anyone out there help me at all.....please?  Even if you are not from my area, I would still like to find out what my options are.  Like I said, I am only 30, and everyone is telling me just to give up, have a hysterectomy, and it will all be fine , endo will go away, and I will move on and live.  I WILL NOT give up!  I am a fighter!  PLEASE HELP IN ANY WAY YOU CAN!  
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Avatar_f_tn
Whatever you do, DON'T GIVE UP!  You are way too young to have to deal with a hysterectomy.

I was first Dx in 1989, but this has been my worst yet.  Back then, there was no Internet (Now I feel REALLY old), but with the resources available online, you can find a SPECIALIST!

I'm new at finding specialists, but I have been very successful in narrowing down a few.  Given your area, I'd suggest looking into Dr. Liu at the Women's Surgery Center in Chattanooga, TN.  He is currently reviewing my records.

Also, Dr. Kanayama (NY Endometriosis Center), Dr. Albee & his team at The Center for Endometriosis Care in Atlanta, GA, and Dr. Redwine at the St. Charles Medical Center in Oregon.  Dr. Harry Reich in PA is also a pioneer in the field, but I have had a difficult time contacting that office.

By all means . . . go to a specialist.  Better yet, search online for their Websites and review their information / FAQ.  You may never go back to an ordinary GYN for a lap again.

Good luck to you:-)  All I can say is that I know what your feeling.

Hang in there . . .
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211043_tn?1337054301
I just wanted to say I wish I read this post before I responded to your message!  It answers a lot of the questions I asked you.  So I just wanted you to know that I read it, and now I get it - and once again, I'm so sorry
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Avatar_f_tn
Hi. I have had endo for about 7 years now and had a regular laparoscopic surgery to diagnose. But like you, it is very hard to find a specialist. 3 years ago I traveled to another state 6 hours away to have surgery. I found Dr. Robert Albee in Atlanta, GA. www.centerforendo.com. He does excision laparoscopic surgery where he excises the disease. He is a great doctor and an even better surgeon. I recommend him 100%! There is also Dr. Cook (can't remember where he's at...but do a yahoo search "Dr. Cook endometriosis" and you'll find him).

Hope this helps!
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Avatar_f_tn
Oh I also forgot about Dr. Redwine as a previous poster mentioned. He is also said to be very good!

One note about Dr. Albee....He has followed up with me by email & telephone every few months since surgery to make sure I'm doing well. I just had my first child this past February and thanks to his surgery that was possible! :-)

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658030_tn?1224622602
I have been in contact with the 2 doctors from the CEC in Georgia, and I am currently waiting to get all of my info from my gyno sent to them.  I am wondering about the cost though.  I really do not think they will take my insurance.  can you give me any idea on the cost, downpayment, and payment plans? Thanks!
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Avatar_f_tn
Hi. I think without insurance my surgery was around $3,000. But, I would have done the surgery even without insurance. We couldn't have afforded it without insurance but I would have found a way to pay for it. The surgery was definitly worth the relief I got.

Good luck! Dr. Albee is truly a great doctor. His bedside manner is excellent and his follow through with patients is unbelievable!
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658030_tn?1224622602
Are you serious? Thats all it costs?  I am in shock.  My surgeries with my Gyno here always run around 14,000. But here in IL, he takes my insurance.  I am sure the Dr.'s there would allow a down payment, and followed by monthly payments.  If not, I'm sure I could take a small loan out for that amount.  Also, how long did you have to stay in GA, did you have to have someone there with you, and how long were you actually in the hospital?  
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Avatar_f_tn
Last week I finalized my surgery plans, and I'm going ahead with Dr. Sinervo at the CEC.

Once I sent in all my records, he called me personally to consult.  I'm very impressed with the knowledge and demeanor of not only Dr. Sinvervo, but his staff.  They are incredible.

I have insurance, but they will treat it as an out-of-network surgery.  However, Dr. Sinvervo did state that they are pretty good with appealing insurance decisions.  According to him, most of his patients never pay more than $2800-$3000 out-of-pocket.  

I wish you nothing but the best in your search for a doctor.

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119341_tn?1232567357
Have you tried looking for doctors in the STL area. My doctor was Dr. Boyd with St. John's Mercy. He did my leep procedure, my lap, and his associate delivered my first baby. They of course are OB/GYN's. They are good doctors. Or look for some endocrinologists. I'm getting ready to look for one myself, regarding thyroid problems in the STL area. Paula
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Avatar_n_tn
I can definitely relate to when you stated that your family or friends can even remotely understand what you have and are going through. I feel the same way.  I started having some mild pain last year in May 2007 and was told that I had a beginning hernia.  My doctor sent me to a surgeon and after a few test, he said that the hernia was not even big enough to cause me any pain, he then asked me when the last time I had seen my OB/GYN, I actually had an appointment for my annual the very next day.  During my exam my doctor felt a cyst; at that time my doctor said that I may have adenomyosis. I went home that day in even more pain that I had when I walked in.  He ordered a number of tests which included a trans-vaginal ultra sound and a trans-abdominal ultra sound, the tests showed nothing, I had MRI’s and CAT Scans of my kidneys, gallbladder, liver, I already had a appendectomy in 1992 so I knew that it wasn’t my appendix, however, I still had pain and when he checked me again, that cyst was gone but then I had another one on the other side.  Then the doctor said that I may have endometriosis.  I had a lap done on July 23, 2007, and it was endometriosis, stage II or mild endometriosis, and I had the kind that caused all of the pain, I also had fibroids and cysts. I was also given a Lupron ejection (which I hated, it puts you into menopause).  They say that the pain associated with endometriosis is usually right before your menstrual cycle and when you are ovulating, mines was every single day. I hurt so bad that even my toes hurt and my 9 year old daughter would rub my feet and legs for me every night to try to give me some relief.  I did work, but after I got off, it was straight home to my bed.  I felt like I was missing out on so much and that I wasn’t there for my girls as I should be. I found myself a regular as my OB/GYN’s office, sometimes every month, then every 2 weeks, then to every week.  I had another Lupron injection in October.  The Lupron wasn’t even shrinking the endo like it was suppose to do.
At this time I was 35 and had 2 children and also 4 step-children.  My husband and I wanted to have another child, and had been trying since 2003, with no luck, I even took fertility pills.  I never had problems getting pregnant with my 2 girls and ever before I had them, I never had cramps or pain associated with my menstrual cycle.  Since we still wanted to have another child my doctor referred us to Dr. Randal R, Odem, M.D.  He is located in St. Louis and his specialty is ‘reproductive endocrinology and infertility.  However, it was October and when they called to schedule me my appointment wasn’t until January 2008.  On December 19th after many months of virtually not existing and after living on Oxycodene and Ambian (sleep medicine) I decided that I had enough, they scheduled my Total Complete Hysterectomy on the day after Christmas.  The next day when the doctor came to see me he also informed me that not only did I have endometriosis, fibroids, and cysts, but I had adenomyosis as well.  (Adenomyosis is a condition in which tissue that normally lines the uterus (endometrium) also grows within the muscular walls of the uterus. Adenomyosis isn't the same as endometriosis — a condition in which the uterine lining becomes implanted outside the uterus — although women with adenomyosis often also have endometriosis. The cause of adenomyosis remains unknown, but the disease typically disappears after menopause. For women who experience severe discomfort from adenomyosis, there are treatments that can help, but hysterectomy is the only cure.)
In March 3 months after my hysterectomy, I started having the same type of pain again.  I have been back and forth to the OB/GYN and a Gastronologist.  They believe that an endometrial implant my have implanted itself into my liver.  So as of today, even after my hysterectomy I still continue to suffer with the effects of endometriosis.  I can’t say what is right for you, but having the hysterectomy hasn’t helped me only for a few month, now I have to deal with mood swings and very bad hot flashes at the at of 36.  
I have gotten over the fact that I can no longer have children.  In fact, my husband is 10 years older than me and his son’s are starting to have children of their own.  In April we had a little granddaughter born, and then another one in July, and then a grandson in August.  I get them every chance I get.  Actually, every weekend I have either 1 or 2 of them, and I just love on them and spoil them as much as I can.  Good luck and I hope that you find relief.  
Here is Dr. Randal Odem’s Information
Washington University Medical Center
Infertility and Reproductive Medicine Center
4444 Forest Park Avenue, Suite 3100
St. Louis, MO 63108
Phone: (314) 286-2400
Fax: (314) 286-2455

Also, here is the link to his website  http://www.infertility.wustl.edu/fpp/infertility.nsf/WV/4A855F62C83941A186256F930071F370?OpenDocument

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Avatar_f_tn
Which insurance did you have? I don't know if your out of pocket was 30% plus 100% excess charge like mine. Can you provide some information on how your out of pocket cost at CEC was around $2800 to $3000. Did you do anything before surgery?

Thanks.

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Avatar_f_tn
How much did you have to pay out of pocket?
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Avatar_f_tn
Thanks for your information. Are you working with Myriel on this?

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