Pedundal neuralgia

Female suffering from pedundal neuralgia for almost a year and a half now. Finally at Loyola's Chicago pelvic pain clinic we're at least they seem to have knowledge and maybe a plan. But really just keep piling on more meds that seem to give me very little relief, but a lot of side effects; fogginess, weight gain, fatigue. Gaba, lyrica, elavil, Valium. I take 1000-20000 mgs of ibuprofen a day for almost a year now. Even the narcotics I borrow from friends don't really touch the worst of it. I can barely do my very physical and stressful job. I don't see my friends. I don't exercise anymore. I don't have sex. My only child is away at college thank goodness. I don't get out of bed except to go to the job I can't lose

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  • Had surgery 5 Months ago here in England based on method of M. Robert of Nante in France.  Recuperation is a long process but in my case seems to have been effective.  Not a total cure or a magic bullet but not the nerve is no longer trapped it must repair itself and that can jangle sometimes.  My medication is now minimal.

    I am male an my problem was caused by a trauma. 

    Medication just fogged my brain. I was unable to compose poetry while drugged up but now my muse has returned occasionally.  Too many meds really can zomby the brain. 

  • I can completely relate to your post. I too, have no life anymore because of this horrible condition, and absolutely can not lose my job or I will be homeless. It is a lot of stress and burden to carry when we are supposed to be reducing stress for this condition. People say get a different job with less hours and stress. Easy to say when you don't have mounting debt that has to be paid and barely make enough money now to pay it all. 

  • Please read my prior posts on Pudendal Inter-Stim surgery for pudendal neuralgia if you haven't yet. It has been almost one year since my surgery and I would say I am 50-75% better. It isn't a cure, but my pain is better managed because of it along with limiting sitting. If you have questions, I would be happy to try and help. Dr Kevin Benson in Sioux Falls, South Dakota is my doctor. Best wishes in your current treatment.

  • So happy it's working out for you. I'm going in on the 31st of May. I pray I get good results as well!

    Thanks for the Inspiration 💜

  • Brandi...thank you for sharing that. I will certainly be praying for a good outcome for you and that your quality of life improves. I'm going back late June to see if I can get help with the programs for better travel. Sitting is still my biggest culprit, especially in a car, but I have to remember it is better than before surgery. Please share how you get along. Best wishes! Roxie

  • I have an appointment there with Dr. Colleen Fitzgerald in August. I have been suffering without a diagnosis for seven months and was truly hoping for help there. Your post depresses me but does not surprise me. I have been to 15 specialists with no help yet. Have you gotten any better since this posting?

  • Hi Njzuck! Loyola has a whole team there. They explore every possible cause of your pelvic pain. I hope you find your answer and relief. Yes things have gotten somewhat better! The pudendal nerve block has made my pain tolerable. If I keep up the PT and avoid the worst triggers my baseline pain is manageable with fewer meds. I'm afraid I may have permanent damage as my pain went on for 2 years without any effective treatment. In the meantime my lateral hip started feeling loose /sloppy and eventually turned into weakness and pain. Joint and muscle pain though. Not the awful nerve pain. After a round of PT just for my hip that did nothing, Dr Fitzgerald sent me for an MRA and I have a labral tear. She thinks my pudendal neuralgia may have just been the first symptom of that. I tend to think all my awkward movements/limping/ babying that side caused the tear since I'm predisposed anyway (tilted pelvis, mild FAI) . My daughter had the same tear when she was 15, but she was a competitive dancer and distance runner. This Thursday I am going for an arthroscopic labral repair and osteoplasty with Shane Nho at Rush. Recovery is long and the surgery itself puts the pudendal nerve at risk, but I am hopeful. Also looking forward to another nerve block. I have had to wait to space it out from my hip injection and now surgery. Good luck to you! I'm excited for your updates. I will try to post more

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