Health Organization for Pudendal Education

I'm getting to the end of what I can handle. My life came to an end after damage to my pudendal nerves in a surgery. I'm trying to piece everything together and see where to go from here. I want to find out from others if theirs followed the same path as mine. I would appreciate it if others can concur if their symptoms followed this path. This is from a foggy memory but is what I can recall:

1. I immediately experienced urination difficulties and had some pain initially after the nerves were damaged.

2. As time went on I developed rectal pain and some vaginal pain.

3. As time went I it all progressed and grew worse until now I can't empty my bladder without great strain, and I have unbearable pain in the entire region so that sitting became intolerable. The rectal pain is unbearable when I defecate even when I take magnesium citrate to loosen stools. My bladder goes into spasms and I'm to the bathroom every half hour with urinary urgency. Sometimes I get hyper excitability and uncomfortable twitching.

4. I can't even think about intimacy because the vag pain is excruciating. I can't even wash myself in the shower because afterwards I feel "raw." Do other women experience this?

5. I haven't read of anyone posting this symptom, but my feet feel like plastic - I don't know how else to describe it. They don't feel right. Has anyone had this odd sensation?

6. I have instability when I walk and I fell several times. I've walked into walls. Has anyone else had this?

7. When I sit my feet and legs turn color and others have remarked that it looks like I have poor circulation. I eat a stellar diet and take vitamins. I exercise from bed and have always kept myself in shape. Still, when I sit on a neck pillow my legs get a weird sensation in them and others have remarked that my legs look shiny and that the color is off.

Can others tell me if this is how theirs progressed? Is it normal to grow worse over time? Do others have severe bladder issues so that they can't empty? I feel like I'm in quicksand. I had the nerve block and got relief because the area was numb. But I'm frankly afraid to get anything else done. One of the doctors I saw warned me about doing anything because it can get worse. He said tampering with the nerves can cause foot drop. I don't know what way to go. I don't even know if others experienced all this. I've been stuck for years in my room and when I get out I feel so out of it because life has moved on and others are doing things and I'm not a part of that world anymore so I feel strange out with others. They all talk and I'm walking around with a rain cloud only over me. Do others experience any of this isolation?

Hi Saint,

Those do sound like difficult symptoms, and I can understand being at the end of your rope. I definitely feel that way, and I do feel alone at work, knowing that I am managing (or trying to) this massive problem and I can't tell anyone about it. I have also gotten worse over time. My symptoms are different from yours. I have burning (which without meds would be completely intolerable) and occasional stabbing and knifing. My pain is all on the perineal branch, so I am able to wear ice in public in my underwear, and it takes care of what my four meds do not. But when my problems started, it was mild and not constant, so it has definitely gotten worse. My symptoms started a little over 3 years ago.

Have you had any MRIs of your back and pelvis? Your feet and legs symptoms sound like you might have a disc (or something else) impinging on your nerves. An MRI would help determine if that is creating some of the problems. I would definitely let your doctor know about those symptoms.

The burning with urination is common, and I definitely have that. I do not have a raw feeling after a shower, but my burning goes up after a shower, because the heat of the shower relaxes my muscles and reduces my pain a bit. Sometimes I count the seconds until it kicks back up after the shower, and it is usually only a few seconds.

I had urinary frequency and was prescribed a medication, and it works wonders. It's tolterodine (and there a few other options too). I would ask your doctor about medications for your urinary frequency. Are you on any other medications? I don't like that I'm on so many medications, but I can't function without them, so I don't feel like I have much of a choice unless I can find a medical procedure that solves this problem. So I would ask your doctor if there are medications you can take to reduce your symptoms. Do keep us posted.

April

Thanks April. I'm glad at least to find someone else has had this progress. I'm on morphine, neurontin, and amitriptyline at night. The doctor told me I should up my dose of the neurontin and amitryptyline to take it during the day. It makes me tired but I have to do something because I keep thinking of ending my life to escape it. The morphine is not enough. The CDC rules have doctors afraid and they try to keep you under 90 mgs. a day which is insufficient for the level of this pain. Have others experienced this trouble with pain management? On top of that, patients are pushed and forced to submit to urine testing once a month to make sure they're taking their medication. This is cruel to force people in a low-risk elderly population to submit to urine tests; especially people whose bladder is impaired from pudendal nerve damage. These pain specialists are extorting broken people who rely on pain medication and using them as cash cows. They charge our insurance $250 a test and the office visit is $175. When I simply cannot empty they force me to use a mouth swab and charge the insurance $1,000.00 a test. This is an outrage. Can others please join me and write to your congressman or congresswoman to ask them to end this barbarism? People who don't have insurance can't afford to pay the astronomical fees they're overcharging for these drug tests that likely cost them $1 a test or less wholesale.

Our insurance was $17,000 a month and we had to drop down because we could not afford it and are trying to pay cash. We can't pay $1,000 a month! I'm older and in a low-risk population! I was disgusted to see a frail, elderly woman in her 90's clinging to a walker with a drug test swab jammed in her mouth. PLEASE WRITE TO YOUR CONGRESSMAN OR CONGRESSWOMAN BEFORE YOU REACH THE POINT I AM AT. I read where people who are in severe pain are being left to suffer because they CAN'T AFFORD THE ASTRONOMICAL DRUG TESTS.

My symptoms just keeps growing worse and worse and I want to know if this is normal?

I'm so weary I don't know how much more I can take. Does anyone know of a more active forum or support group where people share symptoms and understand? This forum is good but not too active. I would appreciate anyone's thoughts on what works for them to alleviate the excruciating pain. It has grown worse and so have my thoughts of escaping the pain. I have a great husband who supports me but the isolation is hard to deal with. The pain has grown excruciating so that I have pelvic pain so bad I sometimes get nauseous.

I've read where some people have undergone surgery but my pudendal nerves weren't trapped, they're actually damaged.

I would sincerely appreciate anyone's response. I don't know how much more I can endure. I'm thinking of asking for the fentanyl patch because the dose I'm on is leaving me in pain all day and I just can't continue on like this.

Hi,

Wehre do you know from that your Pudendus nerve is Damaged?

Regards,
Lina

It would be based on your history, symptoms (are they in the area innervated by the pudendal nerve?), and clinical exam by someone who is experienced in diagnosing PN.

Violet

Lina91 wrote:Hi,

Wehre do you know from that your Pudendus nerve is Damaged?

Regards,
Lina

I was diagnosed by Dr. Castellanos.

Lina91 wrote:Hi,

Wehre do you know from that your Pudendus nerve is Damaged?

Regards,
Lina

No I don't. They just told me it was damaged.

HI GUYS

YES JOIN THE LIVING NIGHTMARE I GOT MY PUDENDAL NERVE PROBLEMS FROM PTSD AND LYME DISEASE. I HAD IVF SURGERY ON MY PELVIS AND IT JUST RUINED MY PUDENDAL NERVE. ANYBODY HEARD OF CRYOABLATION OF THE PUDENDAL NERVE??? I SHOULD NEVER OF HAD THAT IVF SURGERY

Dear Saint

Please hang in there. I know of a Dr. in Atlanta that does cryoablation of the pudendal nerve so your whole pelvis goes numb. April knows a lot about it.... Try going to the Cleveland Clinic. There is also a Dr. Attaman in Seattle that can help you. I know the Cleveland Clinic takes insurance. Please hang in there. I am trying to get more information on Cryoablation of the Pudendal nerve. I can not sit thru a movie or a long car drive its like my pudendal nerve is on fire.

May God bless you and I hope you do not have to suffer