Pudendal Neuralgia

Hello all I am a 24yr old female, recently diagnosed with PN after a year and a half of chronic continuing pelvic pain. Im in the middle of a storm right now. My insurance (Sutter) there are 0 doctors that have any clue of this condition. I've been seeing a Jerome Weiss of SF and he has been doing acupuncture, myofascial release, and suggested physical therapy. Thats all great and i know it takes time to heal if at all possible but I'm in so much pain. I have a daughter she's 15 months old and I am taking college classes. Im treated like a drug addict because I am on Norco 2x a day which as of now isn't touching my pain, Ive progressively gotten worse. I just can't stand it. Im hopeless. I am writing this,( i apologize for the woe is me rant) to see if there is anyone else on here in Northern CA, Im in sacramento. If anyone has my insurance, or are seeing doctors up here that have helped them lead me that way! Im trying to find a pain management dr that can continue my medication therapy and do Pudendal Nerve blocks, but everyone is acting like this nerve is just non existent. It makes me mad as this is a hard condition to prove but is very debilitating. Any sort of guidance, references, anything at all. I appreciate. Thank you all for sharing your stories and support for the others on here.

16 Replies

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  • I can understand! I am not in N.C but thought you might want to hear of some one else with same agony. Have had for five years now. I have gone every where and done every thing that I can afford. I have become house bound. I have an entrapped rectal nerve, PN. I have gotten more help from GP then all the pain specialist. I have fire and burning 24/7 and it radiates to my vaginal area. I have also seen rectal-colon Doctors. Cannot sit, or walk or stand very long. Resting in bed was helpful but even then it has changed. They tell me it is not curable but there are things for relief which I do not tolerate. My best friend is an ice pack 24/7. I take Percocet, two tabs three times a day---stop worrying about what others think about that. I use to be there but I have learned to stop and taken anything that can give me relief!!! For the first time right now a rectal colon Doctor has me using proctofoam to insert rectally , it stops the burning up to 7-8 hours and I can repeat. I still have pain but it is more tolerable now. I also have other problems like spinal cord injury, but getting some relief for PN is like a miracle. I wish you luck and you find the help and relief you deserve!!

    trishj46

  • Exact same situation I am in Florida have had blocks andbotox injections to no avail take oxicodone 4times a dat and ice constantly.please explain what isproctofoam? At this point I will try anythingfor relief thank you ladylooloo

  • Proctofoam is inserted rectally----it is a combination of hydrocortisone and another numbing drug. I only use 2 times a day with relief. Can be taken 3-4 times a day. It is very expensive unless you have health care or supplements to cover it. I have had all the injections with no relief!

    If you google CBD for pain it will tell you about another substance that I am going to try for pain. Good Luck!!

    trishj46

  • pudendalhope.info/node/46

    Please reference this site. It is sooo helpful!

  • Been there---------------Done that!!!!!!!!!!

    trishj46

  • You deserve relief as well my friend, it sounds miserable and I know it is. there's life after this I have to believe that. Keep waiting for my "laughing moment" where I can look back and just laugh and say glad that's done. It's not just what people say about pain killers it's how my doctors view my because I'm young, and I have no idea what I'm looking for as far as pain management. considering a spine specialist as I'm sure you've thought that to contribute to your nerve as well. wishing you the best! I'm here if you want to bitch and cry. do it all at once. hahah <3

  • Hello trishj46,

    Please, please reach out to my doctor or the dr's in the same practice. I'm in Arizona and the doctors names are Dr. Mario Castellanos , Dr. Hibner or Dr. Dasai. They specialize in this pain. I experienced every single one of your symptoms. It was extremely debilitating and I felt helpless. Being a single mother of three I couldn't give up yet every day was a constant battle between giving up and going on for my kids. I understand, empathize and sympathize with you. I was taking opium suppositories, Percocet and everything else. None of those helped. I would drink to take the edge off. It was not good! Once I went to see my Dr. we tried a couple things including myofacial therapy but finally, finally tried to Pudendal nerve block and Omgoodness! I cried tears of joy! I felt no pain, I could walk, I could cook for my kids, I could shave my legs and brush my hair! All of these things before would kill me. Please, please call. There is hope, I promise. Good luck! You'll be in my prayers along with all of the sufferer's on here!

  • Been there--------------Done that!!!!! Thanks any way!!!!!!!!!! Good Luck!

    trishj46

  • Hello elevenpain, I'm in Phx, AZ and I would highly recommend the PN block! It works miracles. I suffered from severe pain and even had a hysterectomy thinking that was the cause. Call Dr. Mario Castellanos here in Phoenix at St. Joseph's medical center. He's a fantastic dr and patients come from everywhere to see him. I receive PN blocks every 6-8 wks! It works!

  • Thank you so much! I'm glad to hear you have found relief that is awesome! I will definitely look into that dr, do you know what type of dr or specialist she is? And how much the block itself costs? Thank you for sharing your positive story I needed that. <3

  • It's a CT nerve block and it's covered under my insurance. The blocks are about 1K prior to insurance coverage. Please google Dr. Mario Castellanos or Dr. Michael Hibner. They can help you & they are very empathetic as well. When I say people come from everywhere they really do. Inside USA & outside of it as well. I wish you luck sweetie! I'm a 40 year old single mom and I thought I couldn't go on but after seeing them, I found hope again. Don't give up!

  • I forgot to mention, they are gynecologists. The urologists I saw were helpless!

  • pudendalhope.info/node/46

    Please reference this site in your research, it explains so much!

  • I'm sorry you are dealing with this. Jerome Weiss helped immensely for me. I know you're seeing him. It's expensive I know. I've also gotten help from a pelvic floor PT who will teach your partner to do the muscle release. Dianna DiToro in San Rafael. Those are the 2 people who helped me the most. I was in so much pain 3 years ago i couldn't walk or sit normally. Now I'm in very low discomfort as long as I take it easy and I'm able to swim. It takes time. Hang in there.

  • I'm in the exact same boat with the same pain since 2009. But I am a lot older than you and still can't find a diagnosis for this pain. Whenever I suggest pudendal nerve entrapment or pudendal neuralgia nobody seems to know what I'm talking about. My frustration is through the roof and I am going to demand treatment for pudendal neuralgia on my next visit to the new specialist. I wish you luck and I know how hard this is.

  • I wish you luck as well and lots of pain relief or just a knowledgable dr that doesn't cost an arm and a leg lol. If this helps urologist and obgyn are useless to this most of the time. try to find a great neurosurgeon that sounds scary but no they specialize in the spine and the nerves off of it. a pain management that could do those blocks. chiropractors and they have physioyoga. a good physical therapist. a drug dealer for most of the days. I'm kidding! but if all else fails definitely look for pelvic pain centers, or get in touch with reputable hospitals in your area. they almost always have someone, I know Stanford does. If you are in the northern ca area I can email you some of the contacts I know of. Hang in there that sounds like a load of crap and you can tell me to eff off I don't mind. it's good to let it you. oh there's also this test the motor latency test that supposedly sees how the nerves respond therefor diagnosing you. I hear it's finnicky but worth a shot. the pudendalneuralgia there is hope website is awesome you can put in your state pull up docs that specialize in this horrible condition. I hope you feel better and you're not alone we're here. *hug* feel free to contact me if you are feeling it bad or whenever.

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