ENDO Messages for August, 2005: Re: Confused and Frustrated!!!!!!!!!!!!

Re: Confused and Frustrated!!!!!!!!!!!!

From: Amanda (anonymous@obgyn.net)
Sat Aug 6 11:38:51 2005

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Hello, Amanda! My name is Amanda as well and I am also 25 years old. I feel your pain! I have been bounced from Dr. to Dr. since I was a very little girl. I got my period very early (9 years-old) and started having symptoms immediately. I have been diagnosed with everything in the book (PCOS, IBS, food allergies, and the list goes on), but the diagnosis was always one of exclusion. I have been telling doctors for years about my pain, but have never once been told about or tested for endometriosis. I actually had a very reputable OBGYN at the UNC Chapel Hill Medical Center tell me that “there is no scientific explanation for painful sex.” She simply gave me a numbing cream and sent me on my way. Another, again very reputable physician, at Duke University told me that I should have private therapy and do group meditation because I cried so much during my appointment with her. She said that I must be clinically depressed and have been sexually abused because I don’t want to have sex with my husband. Maybe I don’t want to have sex because it hurts!

Over the years I have spent many thousands of dollars going from specialist to specialist all over the country, only to be disappointed, embarrassed, and infuriated by their lack of understanding and caring. I have bought countless books, searched through thousands of medical journals and surfed the internet endlessly for answers. It wasn’t until someone mentioned endometriosis to me that everything in my life made sense. I have daily pelvic pain that gets dramatically worse with ovulation and menstruation, and have had this pain for 16 years now.

I would like to pass on the name of a physician to you. His name is Dr. Albee. He is a physician in Atlanta, GA that specializes in endometriosis. He will review your medical records for free and will write you a personal letter telling you if your symptoms match endometriosis and if you are a candidate for laparoscopy. His office staff has been really wonderful so far. One lady even gave me her personal cell phone number if I had any questions about, well, anything! I have an appointment for a consultation with Dr. Albee on August 16th, and I would be happy to tell you my opinion of him. You can do a search on this forum and will find many good comments about him. He also has a website at http://www.centerforendo.com.

Best of luck, Amanda! I know how hard this can be, but you are not alone. Please feel free to email me personally at manei@nc.rr.com, if you would like to talk.

At Thu, 4 Aug 2005, Amanda wrote: >
>I am new to this and I found you all by doing a search for endo and
>interstitial cystitis as that is now what my doctors think I may have.
>The pain just started coming on in May of 2005 and when I told my gyno
>about it she did a pelvic exam and ultrasound. When the results came
>back she said they were normal except for a few small cysts on my right
>ovary, which she said was nothing that could be causing pain. I asked
>her about endo and she said no way because during the pelvic exam i
>didn't even flinch. She proceeded to tell me it was all in my head and
>put me on anti-depressants. Well it is now three months later and I am
>in constant pain. I am seeing a urologist because I am having severe
>urination problems, but many tests have shown there is no infection. I
>do not have kidney stones and I had to go to the ER to find that out. I
>am urinating much too frequently, at one point I was going 20+ times a
>day. I have constant pain and pressure in the bladder area, painful
>bowels and also pain in the general anal area. It often hurts to sit
>down, and when I brought this up to my doctors they told me I had an
>internal hemmoriod. Lately, for the past month probably, I have had
>this pain in the pelvis area that feels like period cramps, even though
>I am not on my period. The last period I had about 2 weeks ago was one
>of the most painful ones I have ever had. As I tell my gyno all of this
>she tells me it's normal and to take some aleve 2 days before my period
>is supposed to start. I have come to the conclusion that she is
>convinced it is all in my head so I have moved on to a urologist who
>will refer me to a better gyno if need be. The urologist, however, is
>treating me as if I'm a junkie off the street trying to get pain meds. I
>am 25 years old, I am an accountant, and I have a very good life going
>for me. I am scheduled for a cystoscopy on August 15 with the urologist
>and when I saw him on the 26th of July he had prescribed me some vicodin
>for the pain. It is now over a week later and I am in constant pain and
>going out of town for over a week so I call to ask for a refill, he
>tells me he doesn't feel comfortable prescribing me pain medication b/c
>he doesn't have a diagnosis for me yet. The reason I don't have a
>diagnosis is because I keep getting bounced around from doctor to doctor
>and everyone thinking it is in my head. I think "psychosematic" is the
>word they use. Why would I spend all this money in dr. bills, go to
>ready care 3 times, go to ER, go to urology to have a catheder inserted
>in my uretha...just to get pain meds??????? I am very upset and very
>frustrated at the way I am being treated by these doctors.
>
>It feels very good to get that out!! AGain!!! Reading all of your
>stories has helped me out alot and I wish everyone good luck, if you
>have any advice for me please let me know as I am very frustrated and
>confused!!!!!
>
>Thank you all, Amanda

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