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The final word from pelvic pain dr.: No hyst for me.... The final word from pelvic pain dr.: No hyst for me....

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  #1  
Unread 05-28-2004, 10:50 AM
The final word from pelvic pain dr.: No hyst for me....

In a way, I'm disappointed. As much as I fear going through a fourth gyn surgery, I've long had this fantasy of waking up from a hyst and feeling instantly better. But, after a visit on Tuesday to the surgeon who performed my PSN last summer - including an excruciatingly thorough exam and an hour reviewing my symptoms - he concluded that a hyst is not for me. Also, he gave me a name for my pain problem - as those of us who deal with well-meaning but curious-skeptical relatives/friends all need - "chronic visceral pain syndrome."

So, why no hyst...at best, he said, it might give me 15% relief or so - not a number that would mean success in my situation, given the severity of my daily pain. I'd still be in pain management; the only difference is that I would be on estrogen instead of progesterone.

Anyway, during my exam, the dr. confirmed last year's finding of no internal "trigger points." However, he found external ones along the rectus muscle. (If you're in terrible pain, this is worth looking into.) These points are small dots that are very tender to the touch - and that also worsen/reproduce the internal pain, as unlikely as that sounds, he explained. Warning me that this would hurt a LOT, he injected the points with an anesthetic to break them up. It hurt - very badly, despite his having sprayed an coolant on the area beforehand. It felt like acupuncture gone wrong. It's supposed to hurt, though - the needle has to go into the most painful spot, which can be confirmed only by the patient's feedback.

Immediately, I could feel some improvement; my cramping calmed down to a dull soreness. Some women experience immediate total relief from this process; I'll probably need to go through it a few more times to see if it will benefit me further. In addition to these injections, we're adjusting my entire medication schedule to minimize side effects/calm down the nerves. Today I'm trying a new med, Keppra, which is similar to Neurontin but supposedly has fewer side effects. (I will post an update on it.)

I've accepted this, taking very much to heart what SBlumen pointed out about having to trust someone eventually. Clearly I don't find it easy to trust, especially after the disappointments I've experienced in the past. But over the year this professional, caring dr. has treated me, he has earned my confidence. So I'm still on the Road, but with the knowledge that I'd be here no matter what my surgical status.

Thanks for listening, everyone. Have a nice, painfree holiday weekend..

Hannah
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  #2  
Unread 05-28-2004, 11:41 AM
The final word from pelvic pain dr.: No hyst for me....

Hannah,

Sounds like you have a doctor who takes the time to think through your case and has your well being in mind. I know from experience how wonderful that can be. Good for you!

I hope you as well have a nice holiday weekend ... free of pain ... free of worries!

s
  #3  
Unread 05-28-2004, 12:29 PM
pelvic pain

I have had terrible pain in the past that seemed to be right where my spine ended. It felt like there was a spot or tumor there that was incredibly painful. I could feel it when I sat down and an orgasm would trigger a pain spasm so intense that it pretty much ruined my marriage.

No one could figure out what was wrong.

Finally, I went to the head of the gastroenterology dept. at UCLA. He immediately diagnosed my problem as "nerve pain" and gave me a low dose of amitriptyline:
http://www.google.com/search?num=100...ine+nerve+pain

Amitriptyline is most often described for depression but in about 1/10 that dose it is used for nerve pain.

I took the medicine and within 2 hours I felt fine! After many years of misery it was great to feel better but pretty frustrating to realize how close my solution had been.

I took the amitriptyline religiously for about 5 years then went onto an anti-depressant which had the same qualities so I stopped the amitriptyline. After I went off the anti-depressant I realized the pain had stopped.

I am 9 days post-op (abdominal myomectomy) and actually I can feel that pain again, not as intense but it's there in that spot....I'm trying not to worry about it since I need to heal from the operation. Hopefully if it has returned I can get rid of it with the amitriptyline again.

Iphie
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  #4  
Unread 05-29-2004, 06:06 AM
The final word from pelvic pain dr.: No hyst for me....

(((Hannah))) - I'm so glad to hear that you found a doctor you are comfortable with and one that has taken the time to really understand your pain and help you find a treatment that brings some relief. The injections do sound VERY painful, but if the result is good relief, then it sounds like it is worth it. Please keep us posted on how you are doing as time goes on.

(((Iphie))) - have you contacted your gyn about the pain you are having? Since you are only 9 days post op from the abdominal myomectomy, it's important to monitor this pain to be sure that you are not having any sort of complication. Keep an eye on this and be sure to call your doctor if it continues. I do hope that it subsides very soon.

Beth
  #5  
Unread 06-01-2004, 10:00 AM
Thanks...I'm surprised to be here though!

I appreciate your good thoughts....though I'm a bit disoriented being on this Board. My experiences are more similar to those of the Road Sisters, despite the fact that I haven't actually had a hysterectomy.

For pre-hyst Sisters whose problem is pain, I can only note that the best thing I ever did was to find a pelvic pain specialist. Not a reproductive endocrinologist, not a general gyn...but someone who treats pelvic pain only. There are perhaps a handful of these specialists in the entire US, but they're worth finding and breaking the piggybank for nonetheless. www.pelvicpain.org can help.

Wishing everyone on all sections of the Board painfree days and restful nights...

Hannah
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