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Conflicting info from two different doctors regarding endometriosis specialists...
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05-18-2008, 02:14 PM
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Guest
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Posts: 32
Hysterectomy:
Ovaries: Undecided
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Conflicting info from two different doctors regarding endometriosis specialists...
I'm 36.
I had a lap surgery to look for endo on 2/29/08. Found and "laser/vaporized" what was seen. Also ovarian cysts and suspected adenomyosis.
My gyne who did the surgery said since I still had pain weeks after surgery (and still now DAILY) decided to refer me on. He said he "suspected endmetriosis deeper in pelvic floor" and I had a "tunneling defect". So I was referred to pelvic floor Urogynecology specialist for this. I figured the pelvic floor aspect of his specialty would be helpful.
I saw Urogyn doc who upon my initial consultation appt states that he does not specialize in endometriosis. Urogyn did exam and suggested cystostopy of bladder (to rule out Interstitial Cystitis which we both felt I didn't have but good to rule it out). The cysto led him to discover urethritis which he said might be related to endometriosis... something about them both being inflammatory conditions. I didn't quite "get it". But I've been doing urethral suppositories for treatment of this, three times a week for 8 weeks... two more weeks to go.
Weeks went by and I never had the "endometriosis deeper in pelvic floor" issue checked. The end of April, I went back to gyne for a referral to endo specialist and make sure he knew that Urogyn did NOT specialize in endometriosis issues. Urogyn is new so I guess that is why gyne didn't know better. I assumed gyne would refer me to a Reproductive Endocrinolgist. Gyn doc said that a repro/endo would not specialize in endometriosis but rather infertility, thyroid issues. From my researching, that is simply not true. Gyn ordered BCP Seasonique b/c he wouldn't recommend a hyst w/o trying less invasive treatments first. So I'm in Seasonique which I do not like. (taking the dose in the evening does decrease the nausea)
Last week I decided to call & ask Urogyn for endometriosis specialist referral. He gave me four names within 70 miles and said he could give me more names in metro big city area which would be about 3-4 hour drive from home.
Anyway... all four he gave me are Reproductive Endocrinologists. I had said NOTHING about a repro/endo to Urogyn.
Interesting?
WHat are your thoughts on Reproductive Endocrinologists?
The one I'm leaning toward is a lady Repro/Endo which her info states that she specializes in "microscopic laser surgery for endometriosis". That sounds positive.
I'm going to call tomorrow. I'm nervous and PRAYING that I can get in and be seen w/o delay.
The fear of rejection is actually difficult to overcome too which is not like me. I feel more desperate and discouraged but I'm trying to "climb" back up out of this pit of despair.
Is it odd that the two docs were completely on opposite points of view?
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05-18-2008, 11:24 PM
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Guest
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Posts: 14
Hysterectomy: June 16th, 2008
Surgery Type: TAH/SAH
Ovaries: Removed both
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Conflicting info from two different doctors regarding endometriosis specialists...
I do think it's a bit odd...not really sure what to think about that.
I LOVE my reproductive endocrinologist!! He is amazing and really takes the time to talk wth me. When he told me that I needed the TAH, he cried with me!! I think it's a great next step!
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05-19-2008, 08:08 PM
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Posts: 36,890
Hysterectomy: November 14th, 2000
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Conflicting info from two different doctors regarding endometriosis specialists...
Endometriosis specialists can be in many different fields. Mine happens to an OB/GYN (who does not practice obstetrics at all) and a reproductive endocrinologist. He is considered an endometriosis specialist and a pelvic pain specialist which has been very benefitial for me both for surgery and during my post op care.
I would suggest at least starting with one of the names given to you by the uro/gyn as you are doing. Take a list of your questions and concerns and "feel out" the new doctor. You might even see a couple of the specialists before choosing the right one for you.
Also, it is wise of your GYN to want to try less invasive options first, especially since a hysterectomy does not cure endometriosis. Maybe the Seasonique will offer you some help while you search for a doctor who is knowledgeable enough to help you long term.
Sending lots of best wishes your way! I know it can be frustrating to search for a doctor to help you! I read and read and read before choosing mine! There isn't one even close to being within 70 miles of me so I did have to travel around three hours away. But I found it worth the time, effort, and money!
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06-04-2008, 05:08 PM
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Guest
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Posts: 1
Hysterectomy: October 23rd, 2003
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Conflicting info from two different doctors regarding endometriosis specialists...
It's hard to find drs with same points of veiw.I had total hyster for endometriosis. They did not remove all endo thinking it would just "die" off. LOL That just isn't true. In a desparate search for relief I found 2 great doctors. Had very great success with Dr. <>. He removed every single bit of endo, no matter where it was! Dr. <> is specialist too. To burn of endo with laser does not remove all endo from area. Excision by blade or laser is the best way to go. Read their websites, very informative.
Much Grace to You in Your Search!
Christi
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