About six months or so, I developed a distinct pain at the head/tip of my penis. I was sexually active at the time, so I figured I may have caught an STD or maybe just had UTI. Got tested for multiple STDs and infections by various urologists and doctors and was negative multiple times, however I was still treated with various antibiotics (doxy, azithromycin, rocephin, cipro, etc.). I also had my prostate examined by ultrasound and a cystoscopy which was also clear.
Meanwhile, my pain began to worsen. The last couple weeks the pain there has gotten so intense and acute that I haven't been able to function. I was in the ER twice the past few days for pain, and only today after consulting with an ER doctor/urologist did I begin to realize and accept the possibility of nerve damage or entrapment (espeicallly after they did ultrasounds of my kidney and bladder and all was good). At the ER I was put on Elavil & Gabapentin for nerve pain and given toradol for pain (my pain was so bad at the hospital they gave me morphine and the only thing that brought the pain down from a 9-10/10 to 6-7/10 was toradol).
At this point I'm at a loss of what to do and how to move forward. I cannot live with this pain- it's unbearable- and I do not want to live like this. Have any of you expirenced such dramatic and debilitating pain in this area without any explanation?
I'm not sure how I got this or what caused it. About a month before I noticed the pain, I was in a car accident. It wasn't a major accident and I left the scene with just scratches.
I also have kyphosis, about a 60 degree curvature, and so I'm wondering if it's possible that my lumbar or especially sacral spine is compressing or putting pressure on the pudendal nerve and is causing this pain. I was going to get spinal fusion surgery for my back to correct the kyphosis soon b/c of pain there and some curve progression, but now I'm not so sure what to do.
This whole thing has totally changed my life. I'm depressed and scared. Does anyone here have any stories of success with treatment? Is possible that someday I could be somewhat or totally cured? Do you know of any good doctors in LA or even in the state who can treat this? Can nerve blocks be successful in reliving pain? If my pain is this severe, is the nerve for sure entrapped? Will I need surgery and who/where should I turn to if i do? Can I have sex or should I stop and let it heal for awhile? Will sex aggravate the nerve further or does it not make a difference?
I have a ton more questions, but I'll start with this. Any feedback or thoughts are greatly appreciated.
Much love❤️️
Written by
David23
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I am sorry you are going through so much grief. I can can empathize because I am also suffering with inflammation of the pudendal nerve/ pudendal neuralgia. Unfortunately I do not know of any cures/treatments at the moment because I am in a desperate search of them myself. I can however share briefly my story and what I have been through up until this point and hopefully it is helpful. I actually just stumbled upon this site a week ago but have not yet started a post as I am reluctant to share information because I find that this affliction can be difficult to talk about. I have found it very frustrating to find someone who can treat this particular condition. I'll try to keep things brief, I am a 20 year old female who has been suffering from constant burning stabbing pain and sometimes itching in the saddle area and chronic upper and lower back pain for 2 years now. I have tingling down my legs and arms that seems to be coming from my spine. I experience painful urination every time I have to urinate. As far as seeking help I have been to about 10 different doctors and they have all been perplexed regarding my condition. I have been tested for UTIs, other infections, and skin issues and all have shown up negative, except for thickening of the skin and redness of the saddle area which my doctors think is being caused by the inflammation of the pudendal nerve irritating the skin. I was prescribed lidocaine topical cream and clobetalsol propionate .05% steroid ointment to help with pain. The lidocaine barely dents the pain and only lasts for about 20 minutes. I had x rays of the spine in march of this year which revealed mild scoliosis and I was sent to physical therapy. I went through 5 months of physical therapy for the scoliosis and nothing changed with my pain. At this point both issues (the back pain and saddle pain) had been viewed as separate issues. I visited another doctor and was prescribed paroxetine which gave me bad anxiety and insomnia for 1 week so I was taken off of it. I was then placed on gabapentin and amitriptylline together but unfortunately had a bad reaction to it and my feet became swollen. The doctor I was seeing at the time was hoping to block the nerve pain in my saddle area with medication, but unfortunately I had to quit from allergic reactions. I decided to see my primary care doctor again because all of the other doctors i had seen at that point were at a loss. He suggested that I get an MRI of my back and thought that the pain in my back and saddle were related. I began having spasms at this point that originate in my lower back/ sacrum and travel into my saddle area and down my legs. Test results of the MRI revealed herniated disks of the L5-S1 and T-12. I was sent by my primary care to see a neurosurgeon due to the MRI results, but he was of no help and was basically questioning why I was even there. (He was extremely rude and condescending.) This leads up to a couple of weeks ago where I was up a creek without a paddle and was wondering who to go to next to seek treatment because I have been to so many doctors and tried so many outlets (dermatologists, gynecologists, primary care, physical therapy etc.) Finally I decided to seek the help from a chiropractor a few weeks ago because the pain in my back in addition to my saddle pain has been really severe. The chiro took several x rays of my spine and neck and also looked at my previous x-rays and MRIs. According to his findings he found that: I have a bulging disk in my T11- T12, a minor disc herniation in L5-S1, a -5 curvature of the neck, and that my coccyx/ tailbone may be slightly inverted forward. All of this is in addition to my mild scoliosis. He explained that all of these issues can be placing pressure on my spine and placing pressure on the nerves which is then possibly travelling into the saddle area/ pudendal nerve causing all of this inflammation I am experiencing.
I recall you mentioned in your post that you have some spine issues that are going on, so based on what I have been told about my spine, it could very well be possible that your pain could be coming from your spine. The chiro explained that it is very difficult to figure out where my pain is coming from because I have so many physical issues. The chiro asked me if I have ever had any trauma to my lower back and I recalled that about two years ago, about a month prior to me getting this horrible pain, I took a really bad fall on ice while shoveling the driveway and landed hard on my lower back/ tailbone. I had pain from that fall in my lower back for about week after and then it went away so I assumed that nothing was wrong with me. Here all this time has gone by and the fall could have possibly been the catalyst for my current condition. The chiro sent me to get an MRI of my tailbone last week and it revealed that my coccyx is indeed inverted forward a bit. I am about to begin my third week of chiropractic treatment and so far have not noticed any changes in my pain unfortunately. The chiro recommended to me to see a physiatrist/ pain management specialist to see what can be done to help me since I have made no progress and am desperate for relief. They may do nerve blocks via injection or something, I don't really know what will need to be done first since I have so many issues going on with me at once. I just hope I can get in to be seen quickly and not have to wait a really long time. I can completely empathize with you because this terrible pain has taken every aspect of my life away from me: I couldn't go to college this semester and have had to sit it out, I can't sleep at night and I cannot work and do not currently have a job because of this. Sometimes it seems like I can hardly even function as this is so debilitating. Sorry to have written what appears to be a novel here but I too and desperate to find information/ advice on what to do about this. I also just want my life back and want to feel normal again. I hope you can find some kind of help and successful treatment. I am no doctor, but perhaps you should see a doctor that specializes in dealing with spine issues? If you have any questions please feel free to ask. I appreciate anyone who is taking the time to read my post.
Thank you so much for sharing and I'm so sorry you are going through this. It feels good knowing I'm not alone.
Today I'm having an MRI & CT done of my spine that was initially scheduled for anticipated surgery and then meeting with my spine doctor/surgeon. I'm going to ask to have the imaging done of my pelvic area as well and see if my doctor has any insight about pelvic pain and if going forward with the kyphosis surgery may alleviate pressure on my pudendal nerve (if this is the culprit).
I'm also looking into nerve blocks, but I've read some stories of these blocks causing more or new pain.
I've been to a chiro before and I recently tried acupuncture. I just need some sort of solution fast because the pain has become totally unbearable for me.
i have puedenal nerve entrapment and have been seeing a specialist chrio in art (active release therapy) as well as k-laser. art is when they manipulate the muscles and nerves as well as regular chiro. he has been able to fix all of my unallignments i was totally out of whack all down my back and pelvis and public bone and coccyx and has been able to give me some relief in the pelvis, manipulating the puedendal nerve as well as using k-laser therapy to repair the damaged nerves that have been entrapped. i am not totally out of pain but it is allot better. ask your chiro if he knows of a different chiro that specializes in art and has been practicing for a while. i saw a different art chiro and they didn't have a clue, you have to find the right one. good luck. i hope you find your answer.
good luck with your appt. k=laser is laser therapy. it is simply a laser that the chiro uses to repair damaged nerves and muscle. ask your chiro if he has one or knows someone that does. here is a link to their website:
note: i am not out of pain, but my chiro did manage to change the pain to the direct pudenal nerve by manipulation. i no longer feel like i have a golf ball up my you know what, or have levator spasms or tight rectum. i just cannot sit. pain in the rectum and perinium.
tomorrow i am flying to baltimore to see a nuerosurgeon that will inject the pudenal nerve with a local anesthetic to see if i get immediate relief. if so, i go forward on Thursday for surgery to remove to damaged nerve and implant it into a muscle so that it does not grow back. i willl let you know how it goes. this is not covered by insurance and costs $17500.00. so i hope it works!!!
Hi I am in the UK and have the pain for 14 years . I am a lot better now because of the tablets I take dulxertine 40 mg twice a day and pregablin 50 mg twice a day plus clonsapan 0.5 mg three times a day . pain gone from 9 down to 3 reading your posts a think that the fall on to your bottom could have damaged the pudendal never in alcocks canal its bone that the need pass through its just in front of your back passage . .I had the operation in 2005 but it didn't help that because I was wrongly diagnosis .I went to France as was told that it was pelvic floor
Sorry to hear that the pain had been there for so long for you. i'm glad you've been able to bring it down to a 3 and manage it.
I was told by my PT it's very unlikely that my nerve is actually entrapped but moreso that it is being compressed. Not sure if that's true or not since i was in an accident and a very high stress time when this happened, but i'm truly hoping it's not entrapped so it can heal i won't eventually need surgery for it. i'm already expecting to have surgery soon for my kyphosis
To add: the pain is constant 24/7. Sorry if this is TMI, but masterbation seems to relieve the pain for a bit but still hurts throughout and a lot after.
Has anyone had positive results with any sort of treatment?
I had another doctor suggest IC & I'm not totally convinced it's my nerve (or maybe it's both).
Is it possible that some sort of infection is causing all this that hasn't come up? I did some research and heard of broth culture testing and someone named Ruth Kriz who treats IC. anyone heard of her or thinks this may be a cause?
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