Update from previous post. Saw Primary Care Physician last week for semi annual visit. Repeated to him again my pain in backside and how debilitating it has been. Also told him I have found no Drs in North Carolina to treat problem.
He called this afternoon and has spoken with a Neurologist in NC who he says may be able to help. My Dr mentioned Botox and pudental nerve block.
I am confused as my Orthopedic Dr said the nerve block could not be done on Pudental Nerve. Has anyone had any success with Botox or PN block?
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Rocky68
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I am here in France. So unfortunately will not be of advice to you in your part of the world. Pudendal nerve blocks are normally performed by an injection into the located area near the Pudendal Nerve so that they can see for how long you are without pain. In my case it only lasted for 24 hours which indicated that I had Pudendal Nerve Entrapment..I had this performed on three occasions to be sure of Pudendal nerve problems. I do not know about Botox... I can only imagine it can numb you for a few months??? There are quite a few girls/woman from the U.S. on this site so if you put up a new posting starting with I am in the U.S. followed by your problem then I think they will be able to find you and help you out.
Good luck and I hope you get a proper diagnosis and treatment as soon as possible.
Pepper you are so right......most doctors don't know about this disorder and most do not want to know. It requires additional schooling on their part and they have grown tired of all the years not making money. They just want to get to work & pay off all their school loans. My specialist in Sacramento, CA. said he has offered to train some of the gyno's but none were interested. There was only one other specialist in Sacramento, but he didn't seem to be as efficient and knowledgeable as the first doc who trained in San Francisco, CA at the Pelvic Pain Research Center.
Hi, I had botox 2x for pudendal neuralgia and piriformis syndrome from the spreading pain. Didn't do much for me but no problems with either and no negative effects that I know of. Had both done in ny.
I'm sorry to say I had 4 nerve blocks (one was a bilateral pudendal block), and did not receive any relief. The doctor who diagnosed me is recommending Botox, which I would probably need to have procedure every 3 months. I read the reviews on a website she also highly recommended - HOPE (Health Organization for Pudendal Education) - they're not good. Would you please let me know the name of the Neurologist in NC - I live there. Also, I picked up some valuable information on the HOPE website. Someone posted how important it is to get a "3T MRI" for better images than a regular MRI. Dr. Hollis Potter In New York has the software and protocols. She is getting so many requests (she has a 4 - 5 mo. waiting list) that if you can find someone in your state who does the 3T MRI (equivalent to a 1.5 MRI) give Dr. Potter a call at 212-606-1023, and also have the radiologist call to set it up. If you are able to get one, make sure to request a Pelvis MRI with special attention to the Pudendal Nerve and all of its branches. The only other doctors, besides Dr. Potter, who are set up to do the 3T are located in Oakland, PA and Richmond, VA. Also,
you may want to watch a youtube video by Judy Rentz. I found it to be very informative.
Thanks for info. Actually I am going to see Dr. Paul Harkins who is a pain management specialist with Nova Neurological in Greensboro NC. I am waiting for call from his office for appointment.
I don't think I will use Botox injections due to short time frame from pain relief they may or may not offer. I also am not sure my insurance will cover cost.
Since this is such a difficult problem to treat I need to be sure he has treated other patients with these symptoms.
Rocky you are on the right track as far as making sure the Doc has performed the Botox procedure several times. I have had the injections that lasted only four months, however I am now under the care of the best specialist in this disorder that I have ever encountered. He keeps up with all the latest studies & procedures, as well as attending seminars all over the US. My first botox from him lasted 6 months. I am now on my 2nd botox injection and in December it will have been a year since the procedure. I'm a believer in Botox and also adjusting your lifestyle to lessen "stress." Best of luck Rocky.
No not really. I feel a bit of tightness in the internal pelvic muscles for a couple days but that dissipates. It's such a relief not to hurt any longer.....thanks to the Botox being properly administered.
Hi Rocky; I have pudental & Levator issues since 2006. I receive Botox injections and am quite happy with the results. I see a Urogynocologist for this procedure. These specialists are few and far between. Any long term gynocologist should be able to refer you to one as most know about the extra training other gyno's have received. They also use internal physical therapy that does help on occassion. I can tell you from experience that stress makes this type of pelvic pain a lot worse.. Good luck and I hope this info is helpful.
Thanks Denise. Are Botox injections done internally? Does your insurance pay for them and how long does relief last?
PT did not help me and I had internal trigger point releases, cold laser treatment and did exercises.
It is hard not to be stressed when you deal with this daily.
Are you on any medications which improve symptoms? My biggest problem is pressure I have when laying down. Do you have pressure which makes you feel urge to go to bathroom? Rocky68
Yes, the Botox injections are done internally as an outpatient procedure. You will be taken into a surgical suite and put under mild sedation. The doc has x-ray equipt and ultrasound to use should he need it to help him guide the needles to the right area. My insurance covers it as it has proven to be very effective when done correctly. Still, there is no cure. As our muscles tighten in the pelvic area they pinch the nerves. The simplest way I understand it is this. Most folks when they get stressed will tense their neck and shoulder muscles resulting in severe headaches & backaches.....which is easily treatable. Some of us ladies tense our pelvic muscles which are deeper internally & pinch those nerves that can't be manipulated from the outside.....so we have #10 pain 24/7. I spent most of 2006 and 2007 curled up on the floor in the fetal position hoping I would die. Finally a ER doc put a 100mcg Fentanyl patch on me and said keep using these until the problem is discovered. I finally went on the John-Hopkins website and put in my symptoms in and only one thing came up" "Chronic Pelvic Pain Dysfunction." I told my primary care doc & she said "it doesn't exist." The website said it is treated by a specialist, "Urogynocologist." So I went on the web again and found "one" in the large city of Sacramento. I don't have a particular pressure on my bladder. My pain gets so intense that it "refers" itself all over my pelvic area from vagina up into the ovaries and into my low back. The Lavator muscle plays a large part in our degree of pain. I have learned to recognize the early signs that my Botox is wearing off. I immediately call my primary care doc for a script for Fentanyl then call my specialist for an appointment. He is real good about getting me in within 5 days as he understands the pain intensity we deal with. I compare it to hard labor pains. I would recommend to get on at least a 75 mcg Fentanyl patch right away. Your primary care will probably try to start you on a 25 or 50 mcg because they have no clue the intensity of your pain. If they insist...after 24 hours call the doc back and say that strength isn't working. This disorder is one that you (the patient) has to take the bull by the horns because no primary care doc is going to do the homework to help you. The quicker you get this thing moving the quicker your stress levels will start dropping. It would be nice if there was a cure, but so far there is none, so we fight our own battle and "tell the doctors what we want." Good luck my sojourner on this painful part of our lives.
Wow! This is a lot of good information Denise. Thank you so much. I feel that we have the same problems internally. I was just diagnosed a year ago with levator ani problems and given injections three times now by a great urogyno. Been suffering for 8 years‼️ The only thing is, Fentonyl is not being prescribed as easily anymore because of the whole abuse issues. I see your post is three years old, that must be why you suggested this. So what is your status as of today?
I've had a pudendal nerve block several months ago. Didn't do a darn thing for me. I also had Botox injections in my pelvic floor muscles 3 weeks ago. Can't say as I'm feeling any kind of relief yet. But I was told that the full effect of the Botox can take up to 6 weeks. We'll see... I hope you have a better turn out with them!
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