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mandiPNE (@mandee)

Pudendal Nerve Entrapment/Neuropathy/Damage

Chronic Pain | Last Active: Jun 18 4:08pm | Replies (448)

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@lkeit

II had pelvic vein embolization on November 30,2018 as my pelvic veins were causing leg vein issues, swelling and pain. I never had pelvic pain. I woke up the day after the surgery with numbness and tingling in my buttocks and vulva area. The surgeon said it would pass. I had to wear compression shorts for 30days and was in agony. My insides were pressing against my outsides, which were being compressed by the compression shorts.
Ifinally demanded to be seen by the surgeon 37 days after surgery and 1 week after being out of compression shorts. Doing my own research I said I thought I had pudendal neuropathy – I am textbook case for all of the symptoms of pain, tingling, burning and numbness and pressure. I feel lucky not to have any incontinence issues. My surgeon said since it is inconsistent it is not damaged and will improve, that I just need to be patient.

Meanwhile I am trying to go to work, care for my family and have a normal life. Some days are better than others. Today is a bad day, and it isn’t an illness you really want to publicize as it is such a private area of the body. Additionally I have suffered from fibromyalgia for,the last 10years. I don’t take any prescriptions, and try to be sugar and gluten free to reduce inflammation. I am not comfortable that the surgeon knows anything about this condition.

Does anyone have any advice for me? I live in Cincinnati. I don’t know what type of doctor to see- the surgeon has never in 20years had this happen. I would love to know what type of doctors other are seeking for help, and what is helping. I would be very reluctant to have another surgery since I am significantly worse off than when I had the first procedure.

Thank you

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Replies to "II had pelvic vein embolization on November 30,2018 as my pelvic veins were causing leg vein..."

Yes been dealing with it since 2004.

I was recently diagnosed with pudendal nerve entrapment. It took 13 months and going to many doctors visits to figure out what I had. I have had injections. With no help. I live in Houston Texas. Since Pudendal neuropathy is rare there are not many doctors to treat this. I recently had radio frequency ablationAnd they said it could take up to three weeks before I could feel results. It has been 2 1/2 weeks and I was in pain all day today. My last option would be surgery but I do not know that I am willing to put myself through that although this pain is excruciating and sometimes I just feel like dying because of it. I haven’t tried any pelvic physical Therapy which my doctor thinks I will benefit from! They gave me gabapentin for pain. Tramadol for pain. Lyrica for pain. And none of these things work for me. Ice packs are my best friend. The pain goes down my legs and into my feet also. I haven’t been able to find any sitting cushions that are made for this issue! This is just brutal!

I saw my new doc for the first time today… He's a pelvic pain specialist. Dr Michael Hibner in phx AZ. He's one of only 10 specialists in this field in the US and patients come here to see him from other countries as well as out of state. If you Google him you'll find lots of info…. He also has a couple interviews on you tube. He was very knowledgeable, considerate and caring… He gave me some hope. I saw his physical therapist first who was amazing in assessing my problem! Stay strong and I hope you can get some relief

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