Pudendal Neuralgia

[spunter]

Hi after elimination off all other problems finally diagnosed with pudendal neuralgia unfortunately. It's not a fun condition of which I'm sadly aware and it's a long tough road ahead of me. I wondered if anybody out there has had a specific issue of which I'm looking for answers too. I'm due to have a emergency bladder ultrasound tomorrow as I have no feeling of when my bladder is full. Is that symptom common with my condition as doctors are concerned and mentioning catheters. Look forward too anybody's experience and advice.

Scott

[chillijava]

yes it can be as the pudendal nerve is sensory as well, i sometimes cant feel when i urinate and also have bladder pains, this condition can very in intensity of pain and symptoms, there are plenty of posts, advice and hugs as we are a very caring community

andrea

[Hidden]

Hi. Just wondering how you were diagnosed with PN and what type of medical person provided this diagnosis? Do any of the standard medications work for you? I was diagnosed with "probably" PN at a pain mgnt centre (NHS), none of the medication makes any difference. I have been seeing a pelvic physio for 9 months (private), that helps me mentally for sure, physically there are small signs of improvement. I also have tried Mindfulness for pain, not easy to master but again it helps. Amy Stein's book. Mild exercise. Took up fishing, that helps me relax and distracts me from the discomfort. Anti-depressants have helped. That is about it for advice. Keep going, keep trying different things, adjust and try to stay positive.

[spunter in reply to Hidden]

Hi,

I like you was after elimination from other specialists diagnosed by a pain management consultant. Im lucky that I have private health care so my journey has been much quicker than would have been possible via NHS route. I'm due a bladder scan today as it seems to be affecting my function of this area too. I'm on neurontin which seems to help so fingers crossed I can control this to some degree. It's going to take time I'm told but things do improve if slowly it does get better im told. I hope anybody out there who suffers can get the right support going forward.

Scott

[peters1]

I ask God for wisdom and understanding of what is actually going on and what is His treatment. The doctors told me it is so hard to diagnosis and there are only a few clinics in the US that actually specialize in the treatment of. I had gotten to a point that I was burning constantly in my perineum area...combination of Cymbalta and Neurontin have helped tremendously. If it is too much discomfort that is usually after standing all day...some exercises are for whatever reason I add a Tramadol and this seems to help. Praying that you find relief and for God's healing in your body.

[n33f]

Hi,

Yes this is a symptom I have too. No sensation in my bladder, can't tell when it is full. I have been diagnosed with pudendal nerve issues so it seems this is a symptom. The bladder scan probably won't show anything unfortunately.

Good luck with your journey, I know how hard it is to live with this condition.

[spunter in reply to n33f]

Hi,

My scan is being rushed through by urologist because my bladder isn't draining. Apparently the plan is to possibly have self Cather to drain the bladder an stop possible infections. I have previous kidney failure 10 years ago which put me in intensive care so due care is being taken I believe. Fingers crossed, it's all new to me so let's see what happens. Good too speak too you it's not fun but it's better too know other people who understand this condition.

Scott

[n33f]

It's good that they're looking after you and taking the right steps. A scan definately won't hurt, particularly if there's a history there. Just be aware that scans/exams don't always give results when the pudendal nerve is in play. It seems to be a poorly understood mechanism and so distressing for us patients left to cope with bladder/bowel issues and everything else in that part of the body. Try and push to get to a pudendal nerve/pelvic specialist if you continue with symptoms.

I hope this condition will become more recognised going forward. I noticed recently that pudendal neuralgia now has an information page on the NHS choices website which is progress.

[Gabry81]

I have a long history about this problem, in US consider dr. Elkwood. this is the website:

advancedreconstruction.com/...

Also search on Pudendalhope all the info you need about other specialists:

pudendalhope.info/

[Debra13]

Hello,

I can't fully void my bladder, I have the urgency and frequency problems as well. I always feel like I have to urinate. I'm also plagued with stress urinary incontience. That is due to several surgeries that I have had. This is a very good support group and you can meet great people on here. It looks like you are in the right direction. I myself am seeing a urogyncologist in May. I had to put this appointment off until then because I'm heading to Atlanta Georgia as most of you already know to try the cryoablation. I'll keep you all informed. Praying for us all for painfree days and possible cures someday. Debbie 🙏👍

[ttoney63 in reply to Debra13]

Let me know how the cryo goes. I was supposed to have it but my insurance denied my coverage.

[Debra13]

Update. Trip to Atlanta was paid for in full. Yes, insurance denied it. As of right now I had only found 2 doctors that did this procedure and both had researched it. One in Atlanta and one in New York. I had chose to go to the Atlanta doctor because the results he was getting lasted longer and seemed to not have to be repeated. I was also informed by his office staff that if it's not covered by your insurance that this doctor will fight to help you get it done. That no patience was ever denied. I learned a lot about this and was fighting with my insurance. Needless to say. I got an angel through my insurance company who was fighting for me. Since both of these doctors were out of network. They had me going to a doctor that was going to basically use me as a Ginny pig and try this procedure on me and he had never done this on the pudendal nerve. I called back my case manager the angel who said I had no idea. " they said they did cryoablation on the pudendal nerve". So, I was back to square one. On my gut feeling, I called the doctor's office in New York who has done the cryoablation to check again if they took my insurance. Let the heavens rain because two weeks ago they didn't. I'm in the process of getting the appointment there. Already got the referral just have to send over my notes today. I prayed so hard for the last couple of weeks and I know this is just a bandage but it's one that I definitely am I need of. I will keep you all informed of my status again from this point on. A friend of mine is going to Atlanta Georgia for the procedure I'm sure he won't mind telling you all how he does after it. Keep your fingers crossed and say some prayers please. Thank you everyone. Deb. 😂

[kalecolbe12 in reply to Debra13]

Hi Debra just wondering even though it's 3 years if the cryoablation worked for you and your friend?

[Debra13 in reply to kalecolbe12]

Hello. Here is my story about the cryoablation. I was scheduled to have it done. My flight was booked and my hotel. I was leaving in 2 days when the office called me. Now I have to let you know that I had asked them about insurance because being that I’m from New York I would be out of network and they told me that it would be covered and if my insurance would give them a hard time then the doctor would say it was medically necessary so it would be covered and fight for me to get it covered. So getting back to 2 days before I was leaving the office calls me and tells me it’s not covered and I have to come up with 10,000 to pay out of pocket to even meet with the doctor for his nerve block. I get nerve blocks every 2 weeks and they don’t cost 10,000 dollars. So I was so upset I tried to explain to them that everything Is booked. The woman on the phone didn’t care. As for my friend I believe he got a hefty bill. Yes his nerve block worked for 2 weeks and he was told he was a candidate for the cryoablation and would have to come back for the appointment for it. He lives in Los Angeles so it is very costly. Oh and yes he too would have to pay out of pocket I believe it was close to 15,000 for the procedure. I know it does work for some. I was just very upset with the way I was treated. I have another doctor that does cryoablation in Philadelphia but he told me he would never do it one until it was my very last resort. Apparently it’s a risky procedure. I didn’t know this going in the first time around. I’ll be honest with you I’ve been suffering now for almost 18 years. And I just don’t remember what it feels like to be without pain. Then I get my nerve blocks every 2 weeks and remember. I also have interstitial cystitis so I get bladder procedures done every 3-4 months. This life isn’t fun. The only advice I can give to you is to stand strong and never lose hope. Also don’t let it beat you. I feel worse on the days I lay around. I believe if you give into it it makes it worse. So try to move even though the pain may be unbearable. I hope that helps. God bless you. Deb 👍

[kalecolbe12 in reply to Debra13]

I'm actually doing a lot better most days and I work two days a week I'm 65 so I get social security at least which helps...but a year-and-a-half ago I thought I was going to go out of my mind with the pain so after doing pelvic floor therapy for 8 months and 4 months of muscle relaxers I'm doing my exercises and breathing really helped a lot I think I'm just going to leave it since I'm so much better but I just wanted to know your story and I will continue to fight it thank you for your words