Endometriosis In STL

[woodrock]

My wife has been suffering with Endo for almost a complete year.  We were married at the end of October and are about to celebrate our one year anniversary.

After our wedding my wife started having horrible pain in her stomach, down her left leg, in her pelvis, and so on.  She went and saw some doctors and was diagnosed with Endo.  Had one laperoscopy procedure, and is currently on her second round of lupron...

We have both been searching the surrounding area around St. Louis, MO to find a decent Doc that knows what is going on, but have come up short.  We have also been looking for a support group of some kind here, but have also come up short.

So what I am asking if anyone knows of a support group for us, and a doctor around the area to help that would be wonderful.

Thanks

[BrittanyButterfly]

http://www.slu.edu/obstetrics-gynecology-and-womens-health-home/center-for-endometriosis

SLUCare's Dr. Patrick Yeung, Jr., director of the SLUCare Center for Endometriosis is an Endo specialist

Dr. Patrick Yeung has been recognized by the American Association of Gynecologic Laparoscopists Center of Excellence in Minimally Invasive Gynecology.

He can be found at Stlouis University and St Mary's. He's my doctor.

I hope this helps.

[Kelseyj]

I am so sorry to hear that you and your wife have been suffering through this. I have been battling Endometriosis for two years now, have been through every single treatment, drug, surgery, I've done it all.

Here's the truth, there are NO doctors in St. Louis that are Endometriosis specialists. None. The OB/GYN's fertility specialists are trained medical doctors, who like to push medicine.  Endometriosis is a very difficult and complicated disease and unfortunately it takes a specialist who only treats patients with Endo for the Doctor to be well educated and up to date with the disease. I could go on about this for hours but I HIGHLY recommend you find an Endometriosis doctor who specializes in EXCISION SURGERY. It is the ONLY way to properly treat the disease. I had a laparoscopy here where my OB cauterized my Endo, that only aggrevates the leasions and makes it worse. The cells have to be COMPLETELY REMOVED for the symptoms to stop. There is no 'cure' for the disease, it is a chronic disease and its very important to understand that but there are things that can be done to help with the pain. The Endometriosis diet, vitamins, yoga, and excision surgery are the things that I found have helped me.

I am about to have my second Lap with my Excision Surgeon Dr. Ken Sinervo with The CEnter for Endometriosis Care in Atlanta, GA, this upcoming Monday.  I had my first surgery with him last Sept. and it was a blessing, I was pain free for months. Unfortunately, I have developed a secondary disease, most likely Uterian Adenomyosis, so I am returning for a second surgery to take care of that.

How is your wife doing with the Lupron? I had to discontinue using it after a month due to the horrendous side effects. In my opinion, Lupron is a terrible drug. If your wife is one of the lucky ones that can tolerate the side effects then god bless her. Unfortunately, once you stop using Lupron, your Estrogen starts coming back, along with the pain from the Endo. It's just putting off the inevitable. Lupron is a very very strong drug and a life of going on and off it just isn't acceptable to me. I highly recommend you look into finding an Excison specialist. There are a handle of them out there, Dr. Redwine in Oregon, Dr. Albee and Dr. Sinervo in Atlanta, there are also doctors in New York and doctors with at Northwestern and Vanderbilt Universities. Go see them, have a surgery with them, it will change your wifes life for the better.

I know the loneliness that your wife must feel, it is frustrating to feel like no one understand and there is no one to talk to. I commend you for being such a proactive and supportive husband, she needs all the love and support she can get right now. You are never going to understand the terrible pain she is feeling but just laying down with her and listening to her will make her feel much better. Bring her a heating pad, glass of wine and some hot tea and just listen. It will make her feel much better when she is scared and in pain. If you or her have any further questions please feel free to e-mail me: ***@****

And READ, READ, READ, get the books, read online, read about alternative therapies. The Endometriosis diet really does help manage the day to day pain. and is so much better then being on Lupron, pain killers, all the icky drugs on a daily basis. Be as informed as possible. God bless and good luck!

[woodrock]

Thank you for the nice comments, yes she is having to deal with the wonderful side effects of Lupron, but I am hoping it is just another step in the right direction to making her feel comfortable.

[Des_a_rae]

Hi,

  So sorry your wife is going through something so painful and not to mention stressful and never ending!  It also affects the husbands as well! I to have endometriosis and it really is horrible.  Unfortunately even though this is the "Endometriosis" page there's really not alot that goes on here. :(  I wished there was more help here for you and her both.  I personally wished I could be of more help. I live in Alabama so I'm not familiar with St. Louis. I'm not familiar with Lupron either but I have heard about the really bad side effects. I hope she's not having to deal with that too!  After my surgery in June of this year they didn't put me on anything because I've been trying to conceive.  Again I'm so sorry and I really hope you both get the help you're looking for.  Sorry I couldn't have been of more help but I'm here if she needs to talk. It's always nice to have someone to talk to. :)  Take care, wishing you both the best! :)