Just wanted to share

[Cat1961]

Just wanted to share

Hi everyone, I have been very sick with what ever is wrong with me. I am feeling a little better now; sorry I have not been on for a long time. I am still struggling with the medical system but I feel I am getting closer to some answers. Thank you all for being so helpful during such a painful time. My heart goes out to all of you who are suffering needlessly because of lack of knowledge in the medical industry. Well here goes, I started with low back pain that turned into IC. After many treatments for the IC, my bottom began to give me problems, such pain, I have never had before. I complained to the MD, Neurologist, GYN and Urologist but none of them new what the problem was. I had to talk the GYN to put me into Therapist to get some help. She was wonderful and helped me to get into the Uro-Gyno Dr. That Dr decided that I have something called Pelvic Floor Myalgia something that he found with only one 15 min. visit. During the visit he examined me and I could feel 4 very painful nerves or muscles, he new exactly where they were. After the visit he asked me if I wanted Botox and handed me off to the physical therapist to work with. When I got home, I looked it up on the enter net and it did not match the symptoms I am having at all. I feel it is time to look for a Dr out-sides of my HMO. I have the list of Dr’s that work on this problem and made a phone call today; I am hopping to hear back in a day or two. Has anyone else been this path before? My symptoms are not like the diagnoses I received. Do Dr’s that don’t know what this problem is just try to make you comfortable and not deal with the problem? What test do I need to do to find out if there is a problem or not with the pudendal nerves? It seems that a lot of people go from Dr to Dr before they are helped. Has anyone else had this problem or maybe someone has Pelvic Floor Myalgia. Also I have been having what feel like very bad stinging pain near my tail bone lately has any one had that problem? Thank you all. Cathy

[KarenAnne]

I have had all those same symptoms at one time or another. But I just wanted to put my 2 cents in.....just because your symptoms are not exactly the same as on the internet, doesn't mean that the dr. was wrong. Not every condition presents the same in each patient. (Look how different each IC patient is, look how different each MS patient is, etc.) I'm guessing that "Pelvic Floor Myalgia" is the same thing as Pelvic Floor Disorder. I have pelvic floor disorder & have had great success with physical therapy for all those strange symptoms.

Sometimes it is difficult to decide when we should stop second guessing our doctors & trust them, or just move on. If you feel comfortable with the dr. who diagnosed the pelvic floor myalgia/pelvic floor disorder, can you just call his office on Monday & ask for a call back from him? Then you can say you looked up your problem & were wondering if you were presenting atypically. Meaning that you had the pfm/pfd, but were your symptoms a little different from other patients. Also be careful where you look things up. I usually trust the Mayo clinic website for info.

I'm saying all this because it sounded like the dr. literally"put his finger" right on the problem, & he was not rude or neglectful. Good luck & feel better.

[Kara29]

I like the idea about calling the doc and talking directly to him about possibly miss diagnosing you. It can't hurt to call. Unless you are relying on them for your daily pain meds, then I would tread carefully. It was a pleasure to speak to you this weekend. I hope some of our conversation was helpful to you and of course the survey. You should be able to work with the doc as a team on this, that's the best way to a clear and reasonable diagnosis.

Thinking of You,

Kara

[Cat1961]

Hi KarenAnn,
I would like to apologize for not making my self a little clearer about my Dr’s, I don’t feel they are not wonderful Dr’s; it’s just that the whole situation is difficult. I feel I have the best Dr’s available. The thing I noticed was that each of them tried different things or had advice to try. Also, I did not get my advice from the internet, I used the internet to find out what the problem could be and then I found the leading specialist in the problem and bought his book. I studied the book and called his office, I also talked with some real people who have the problem. I then told my Dr’s to help me find out if I could have the problem. I will not tell you who said what however one of them told me it was too rare I couldn’t possible have that. One of them wanted to put me on anti depressants and Methadone, I had 2 that were brave enough to admit they were stumped and they were the ones that helped me the most with this problem because they really understood how much pain I was in and didn’t hinder me from looking deeper to find the answers. As Kara said the reason we often don’t question our Dr’s is FEAR!! They have the power to make the pain go away or make it worse. I have been the very recent victim of this and know how it feels. It is wrong but it does happen. An emergency room visit might make a Dr very angry at you, I know. I realize we are all very different and can show our symptoms differently. So when do you get a second opinion? I think that is a good topic. When the most important think is at risk, I think that is the answer, I feel my health is worth a second opinion, when I had surgery I got a second opinion my Dr encouraged it he is still my Dr and has been for 30 years. :hi: