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@vklittle61

No not yet but I’m willing to try anything just waiting on my doctor to tell me the next move! This is the most horrible thing ever! Can u tell me what you have done and what meds u take? I can’t sit down at all and I haven’t been able to find any pillows that will allow me to sit down if I do sit down on it Has to be on ice packs. Two years of this

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Replies to "No not yet but I’m willing to try anything just waiting on my doctor to tell..."

So very sorry for what you are experiencing. (I'm a psych RN and Hypnotist) I know how this affects your very existence..My mom had SI ( sacroiliac) joint pain....so severe that she couldn't lie or sit for 4 months without severe neuro pain. It was also hell to watch. We did ice/ heat/ aromatherapy/ creams/ pain med..Hypnosis helped distract her. ( she also has very good coping) what worked was seeing Eric Helm, a pain med doc in pittaburgh area. Initial injections diagnostic to determine if RFA ( rhizotomy) would help and there was relief. She then had rhizotomy and pain is gone. It burns nerves and I read that can be done for PN. She can have it done again. Read about your condition and tx in Ainsworth Pain Institue New York. My heart goes out to you...you will find relief. I know that anxiety/ depression/ anticipation of pain exacerbates pain. Hypnosis can help us "re-process" the pain. Maybe displace it somewhere (hypnotically) where we can manage it better...I create hypnosis audios and can do a pain audio

The Dellon Institute has surgery for pudendal neuralgia but they don't really have any good way to diagnose. I suppose if you already have diagnosis, that would help. Germany has an institute to deal with pelvic problems under Dr. Posson, but it is Germany so may be difficult to try them. Pain management doesn't always treat this, but some pm docs will do injection and maybe RFA. RFA can cause nerve damage so it is not always best step according to peripheral nerve specialists that do the surgical release. However, surgery has a lot of risks unless surgeon has done a lot of these releases. I don't believe pelvic floor therapy makes much difference, but that is another safer option. Using special cushions with the center line where perineum sits cut out of foam is helpful and cheapest treatment.

@vklittle61 So sorry they haven't found anything to help I don't know if I have this but when I sit-down my pain is in both groin areas is this where your pain is?