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Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

Hooshmand puzzle 127-CRPS and Volvodyna

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Unread 03-23-2010, 01:38 PM   #1
dreambeliever128
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Default Hooshmand puzzle 127-CRPS and Volvodyna

I realize that this is older information but it touches on what a lot of the women and men are going through on here, me being one of them.

I have dealt with pelvic pain for over 8 years. I was diagnosed with Interstital Cystitis first and the Urologist and Gynocologist did treat me for that and did get it calmed down.

As far as the pelvic pain, inside, they have no ideal what to do for it. They have all said that my PCP is doing exactly what they would do. He gives me shots inside and out. They don't last as long now so that's why I went back to see 2 new Gynocolgist and they said the same thing. Keep getting the shots. They can't explain the pelvic pain that I am dealing with. Some earlier had said it was CRPS inside. I don't know. I just know that the Drs. I have seen are not even willing to try and figure out what is causing the pelvic pain nor do they care to. That's why I feel some Drs. deserve no money at all for our care. The one I saw last week spent all of 15 minutes with me only to tell me he had no ideal what was causing my pain, no testing or anything. He got over 200. for that visit. It's sickening that we have no say over them getting paid for these wasted visits.

Back to the pelvic pain, when Bill was living he was very understanding that we could not have much of a sex life. He was angry about the Drs. not even trying to help me and leaving me just as I was.

I am bringing this subject up because I know a lot of women are dealing with the pelvic pain and I was wondering what kind of meds or help they have gotten to help relieve it.

I know this is a touchy subject but I don't get embarassed about talking about it anymore. I guess that's from seeing so many idiot Drs. and having to repeat what I am going through. It's a problem that several of us are dealing with and if we can talk about the treatments we have gotten for it then it might help some of us find help through those treatments.

I have also had lidocaine put into my bladder and been on elmeron which didn't help any. The injections seem to help the most but they aren't lasting as long anymore.

I was wondering too if anyone has had blocks to help with pelvic pain, I know they are given for this.

Any of you that are dealing with pelvic pain, inside and out, give me some ideals here.

Thanks,
Ada
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Unread 03-23-2010, 06:48 PM   #2
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Quote:
Originally Posted by dreambeliever128 View Post
I realize that this is older information but it touches on what a lot of the women and men are going through on here, me being one of them.

I have dealt with pelvic pain for over 8 years. I was diagnosed with Interstital Cystitis first and the Urologist and Gynocologist did treat me for that and did get it calmed down.

As far as the pelvic pain, inside, they have no ideal what to do for it. They have all said that my PCP is doing exactly what they would do. He gives me shots inside and out. They don't last as long now so that's why I went back to see 2 new Gynocolgist and they said the same thing. Keep getting the shots. They can't explain the pelvic pain that I am dealing with. Some earlier had said it was CRPS inside. I don't know. I just know that the Drs. I have seen are not even willing to try and figure out what is causing the pelvic pain nor do they care to. That's why I feel some Drs. deserve no money at all for our care. The one I saw last week spent all of 15 minutes with me only to tell me he had no ideal what was causing my pain, no testing or anything. He got over 200. for that visit. It's sickening that we have no say over them getting paid for these wasted visits.

Back to the pelvic pain, when Bill was living he was very understanding that we could not have much of a sex life. He was angry about the Drs. not even trying to help me and leaving me just as I was.

I am bringing this subject up because I know a lot of women are dealing with the pelvic pain and I was wondering what kind of meds or help they have gotten to help relieve it.

I know this is a touchy subject but I don't get embarassed about talking about it anymore. I guess that's from seeing so many idiot Drs. and having to repeat what I am going through. It's a problem that several of us are dealing with and if we can talk about the treatments we have gotten for it then it might help some of us find help through those treatments.

I have also had lidocaine put into my bladder and been on elmeron which didn't help any. The injections seem to help the most but they aren't lasting as long anymore.

I was wondering too if anyone has had blocks to help with pelvic pain, I know they are given for this.

Any of you that are dealing with pelvic pain, inside and out, give me some ideals here.

Thanks,
Ada
Hello dear Ada...

I am very sorry for your pain..it is very real and hard to manage...I wish I could give you some solid help..as in meds and pain relief advice unfortunately..I can't but I can help shoulder your fustration... my last appt. at the Dr. for me was Dr. S last Monay, as you know ...I have been having pain which I thought was my left hip..but I was rather surprised to find out that it is RSD in my pelvis..so far it is concentrated only on the left side but when I sit..I have to sit just right and keep adjusting myself in order to withstand the pain.. RSD messes with everypart of us...it takes not only our patience but our loved ones too....I am sorry as I can only somewhat relate to you but I want to help you...and I hope I did...

Hugz,

Kathy
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Unread 03-23-2010, 08:43 PM   #3
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Hi Ada,

I don't have CRPS but I do have pelvic pain and it does affect my bladder and bowel.

I actually have a disc bulge in L4/5 and S1 but they say its not bad.

But one day I had the most god awful pain in my front side and thought I was having female issues.

Went to the gyn and he felt around in there and pressed on a spot and was like is this it. I almost jumped off the table. I was like yes - what is it...an ovarian cyst a finroid, something worse. He was like ummm nope its a muscle spasm.

I had a spasmed levator ani which is apparently pretty common in women with pelvic pain.

I went to a special physical therpist that helped me with it that included external stretching and massage and internal stretching and massage .

It will not go away until you really work hard at retraining those muscles.

There is a really good book you can get written by the standford docs called A Headache in the Pelvis. Stanford holds week long seminars on how to corrct these issues but they wont get better if you dont do the exercises.

Hope that helps. Not sure its the same thing but its worth looking into. I was very surprised.
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