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mandiPNE (@mandee)

Pudendal Nerve Entrapment/Neuropathy/Damage

Chronic Pain | Last Active: Apr 20 10:08pm | Replies (443)

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@doingbetter

I was positively diagnosed with PNE by Doctor Jordan in Santa Monica, CA, with a proprietary procedure in 2004; it was confirmed by specialists in Houston Texas in 2005. I agree, though, that pelvic floor disorders are notoriously complex; PNE did not explain all my symptoms, just most of them. I got PN bilateral nerve release surgery in mid-2005, with initial improvements, but within 6 months was doing poorly again. Then I changed my entire work lifestyle and did substantially better over time, eventually becoming nearly completely pain-free by 2010. I relapsed in 2012, but refused to change my life again until late 2013 when a specialist (Dr Weiss, San Francisco, highly recommended if he still practices) told me to take 3 months off work and stop sitting altogether during that time or I'd become a bedridden invalid. Shocked, but obedient, I did that. I returned to work thereafter 20 hours/week. Now in 2018 I can work 36 hours/week, sit up to 2 hours depending upon the surface and what I am doing, drive myself to store, and I'm down to just taking 30 mg Cymbalta a day (I was taking 3200 mg of Neurontin/day back in 2004!). Life is SO much better. Strongly suggest you look up pudendalhope …excellent resources for PNE sufferer.

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Replies to "I was positively diagnosed with PNE by Doctor Jordan in Santa Monica, CA, with a proprietary..."

So so happy for you. I'm year 2 after 6 years reprieve with no relief or answers after multiple specialists and procedures to include botox and blocks…
Not even sure if I have pn.
Pain all the time after lifting my leg in bed that started this. 12 years ago suffered for 4.5 with a simple twist. 14 specialist 3 exploratory surgeries and gave up and over time just weirdly went away.
At current, Worse after bm.
Super debilitating and embarrassed.
No pain meds seem to touch it.
Pain unbearable…had my babe with no meds…this is worse.

Thank you for your Post!! I have had this for about eight years and the only thing that helped me was to stop sitting. It's a long story but it came back because I didnt leave well enough alone and now the pain is like it was at first. I'm going to stop sitting because that is what a Doctor in Minnesota told me to do years ago and that's what i did. So to see your post gives me new hope! I am at a place in my life where i am able to not sit for 3 months or more if need be. So I'm going to do that. Thank you.

Hello, could you please share who did the nerve release surgery for you? My mother is suffering as we believe to pudendal neuralgia and pelvic floor pain. I appreciate if you could recommend few doctors to me.

Thanks,
Alex

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