Pudendal Nerve Damage

[ttoney63]

I have been having rectal spasms since early 2009 following a UTI infection in late 2008. I use special pillows, ice packs, creams and a tens unit for relief. I also take muscle relaxers and Ativan. I have found nothing helps for very long. Should I try a ganglion impar block? I don't even have a pain doctor. Any help would be greatly appreciated.

[Hidden]

Have you ever had a pudendal nerve block to confirm it is the pudendal nerve? Sorry i don't know anything about a ganglion impar block. Nerves in the pelvis are so complicated.

[ttoney63 in reply to Hidden]

I have not. I live near Nashville, TN and no one in this area does those that I know of. I actually have had no tests performed. My doctor thought I was crazy until I found the information about Pudendal Nerve damage on the Internet.

[Desperateforrelief in reply to ttoney63]

I had the pudendal nerve block done in Birmingham, AL. I had one done in Huntsville, I don't recommend him. The guy in Bhm uses fluoroscopy and CT scan. It solved 100% of my pain while it worked.

[Rossie21 in reply to Desperateforrelief]

Can you clarify please ? are you saying it worked and you are now without pain ? Hope so .

[Desperateforrelief in reply to Rossie21]

No, it was temporary. But it diagnose that the pudendal nerve was damaged .

[ttoney63 in reply to Desperateforrelief]

What do you do when the nerve is damaged?

[Desperateforrelief in reply to ttoney63]

The next steps are try botox, less invasive than an implant. Visit various PN doctors. I saw Dr. Hibner in Phoenix Arizona . Not much help for me, but he has helped many and is well known for this problem. Dr. Peters did my pudendal interstim and it has helped my pain more than any other procedure. I have a friend with the same issues that I have and it helped her too. We have more than just PN. This is why I recommend reading as much as you can. Ask all the questions you can. The more you know the better off you are. I found Dr. Peters on my own by Google searches for PN and interstim. He wrote a very good paper on why he puts the lead directly to the pudendal nerve. Other doctors were going to S2, S3, S4. I was in so much pain that I figured I had nothing to lose from the trial. I hope this helps and is clear.

[Adele1 in reply to Desperateforrelief]

Please tell me where Dr. Peters is located. I live in Los Angeles, Ca. [e-mail]

[Desperateforrelief in reply to Adele1]

Dr. Peters is in Royal Oak, MI. Beaumont hospital. Suburb of Detroit.

[suzibal in reply to Desperateforrelief]

hi, do you recomend this dr, he is the only one in my area !

how do you feel now, any thing helped you ?

[ttoney63 in reply to Desperateforrelief]

Do you know the Doctors name? I would be so grateful. Since I have been reading about PN I have gotten more depressed. This consumes me day and night. Oh Lord, if I could get that done in Birmingham, I would be so thankful.

[Desperateforrelief in reply to ttoney63]

I saw Dr. Childs at Brookwood medical center in Birmingham. He ordered the test. The guy who did the block is at Brookwood I can't remember his name . He did 2 blocks, both gave 100% relief of symptoms for about 4-5 hours. Dr. Childs is a pelvic pain doctor. He has a 8 month waiting period to get in to see him. You could see if your local doctor could order the test.

[ttoney63 in reply to Desperateforrelief]

If the nerve block only last for 4 to 5 hours why even get one

[Desperateforrelief in reply to ttoney63]

It's used as a diagnostic tool to rule out pudendal neuralgia. Because it helped my pain for a short time they knew my pudendal nerve was affected. I eventually got an interstim and my pain is much better. Though not gone. I was in bed before , but now I can do some things.

[ttoney63 in reply to Desperateforrelief]

So the block would not have worked if you had Pudendal Neuralgia? But, it does work if you have nerve damage.

[ttoney63 in reply to Desperateforrelief]

If you had had PN would the block have lasted longer?

[Desperateforrelief in reply to ttoney63]

The block works differently in different people. It isn't generally considered a fix for pain. Pudendal neuralgia is pudendal nerve damage. Mine was caused by mesh. Many pudendal nerve doctors require positive nerve blocks before they will see you. This is a very difficult problem to deal with and there are no quick fixes. I shied away from the interstim for years. I had 3 of my doctors tell me I needed the interstim. So I finally did the trial, completely removable if it didn't help. It helped. So I went ahead and had it implanted. There are many options out there and each has its own benefits vs risks. Read as much as you can about this. Find what will help you the most. I think the biggest problem we deal with, with PN is we often have to be our own doctors. We often know more than many doctors we see. I have found this to be very frustrating. But don't lose heart help is out there. You need to be patient and search for it.

[ttoney63 in reply to Desperateforrelief]

Lord I should be good with patience. I have had these symptoms for almost 9 years. I'm just frustrated and mad at myself. I'm afraid I waited too long for help. If course, I didn't know what was wrong and neither did my doctor so it has gone on for years.

[Desperateforrelief in reply to ttoney63]

I'm sure you have been patient. I've been suffering for almost 8 years. I'm sorry you're going through this. I'm happy that you figured it out. Getting help for PN issue a long process. Not many doctors know about it. Although I think it's becoming more recognized. My case is more complicated. Being injured by mesh has caused many problems, including PN. No insult was intended. Just encouragement to hang in there until you get what you need. Blessings.

[ttoney63 in reply to Desperateforrelief]

Do you know if I have to have a diagnosis of PN before I can get the nerve block.

[ttoney63 in reply to Desperateforrelief]

I didn't take it as an insult. I'm not sure where to go from here. I have registered with a hospital in Atlanta to see Dr. Prologo. However, he is not on my insurance. I had someone else tell me they had a block done in Birmingham, but they can't remember the Doctor that did it, but it was ordered by Dr. Childs. I'm afraid I have let this go for too long. I think after finding this information on the net it has made me more depressed.

[ttoney63 in reply to Desperateforrelief]

What kind of test does my doctor need to order. I'm so sorry for so many questions but I just need some assistance.

[Desperateforrelief in reply to ttoney63]

The nerve block is the test. The doctor uses a needle with marcaine and a steroid in it. It is a type of numbing agent. It doesn't hit the nerve directly. It is in the space next to the nerve. You are awake for the procedure. I could feel the medicine working and in a very short time (minutes) I had pain relief. This let the doctor know that my pudendal nerve was damaged. If it doesn't stop pain, it might be another nerve or an entrapped pudendal nerve. They like to do this test 3 times for a full positive. Some people do get months of relief from the block because of the steroid. I am not sure exactly why, but I think it's the extent of the damage. Your are not bugging me. I know how hard it is to get help. PN is a very painful problem and not many answers for full relief. Blessings

[Desperateforrelief in reply to Desperateforrelief]

Sorry, pudendal nerve bock is the test to order.

[ttoney63 in reply to Desperateforrelief]

I didn't see a doctors name but dr prologo in Atlanta. Who is the doctor in Birmingham. Please someone help me.

[bettyfl]

Please see my reply in Cryoablation! I talk about the dr I found in Atlanta who can help.

Blessings.

[ttoney63 in reply to bettyfl]

Dr prologo is not covered under my insurance the best I can tell.

[bettyfl in reply to ttoney63]

There is another doctor in Columbia, SC at Midlands Orthopedic. His name is Dr Michael David Redmond. He gives internal pudendal nerve and trigger point injections. I have seen him a few times and am going to drive tomorrow for an appointment Wed morning. He is very understanding and has been doing this a long time. He is knowledgeable and so very nice.

You might want to look him up.

[ttoney63 in reply to bettyfl]

Thank you I just may do that. I so appreciate all the advice. I don't think I have entrapment. I think it is Neuralgia but I would like it fixed.

[ttoney63 in reply to bettyfl]

Do you have PN or PNE? Do the blocks help you and how long do they last?

[bettyfl in reply to ttoney63]

Hi, I have been told I have both. I have been suffering with it for 9 1/2 years along with IC and levator ani syndrome. The doctors don't know which came first but I know they all came at once. The blocks where they go inside vaginally help me the most. I had an appointment yesterday with Dr Redmond and he performed the injections and one including Botox for the muscles. He put medicine right into the Alcocks Canal where the PN runs through. It is all worth the drive to SC for me. He told me possibly 6 months to a year to come back. He helps me a lot and is a wonderful doctor who understands and has a graceful attitude towards me. My urogynecologist in Atlanta used to do the same thing after I convinced her and she is here in Atlanta was only 40 min away. She retired in Sept 2015.

[ttoney63 in reply to bettyfl]

So the blocks last 6 months. Do the blocks affect your sex drive? I'm sorry if that is too personal but I'm a 53 yo male and it bothers me.

[Hidden in reply to ttoney63]

The local anaesthetic in the nerve blocks only last about 24 hours. If you have steroids injected too, that can have a longer action but it varies person to person and if the nerve is irritated or trapped. There is a posibility of aggravatingthe pain if done badly. I can't think it would effect sex drive any more than being in pain, but I'm no expert. Hope this helps.

[bettyfl in reply to ttoney63]

Well they don't necessarily last that long it all depends on the individual. They have helped for 3 months sometimes a year. I think the Botox makes a difference also to the good. I am a soon to be 65 year old family. Not too personal we all have to help each other out. It does not affect my sex drive.

[ttoney63 in reply to bettyfl]

I'm having a hard time getting my doctor to help me at all. So you think if I contacted Dr. Redmond myself I could get this scheduled. I looked him up he is a little over a 4 hour drive for me. I don't know for sure I have PN but reading the symptoms on the net it sounds like what I have. Like I have said I have had this for 8 years, but I'm not, at this moment, in excruciating pain as I feel some of you are. I have read the pain can get worse with time. I don't know if the spasms were caused by the UTI or the stress from it. I keep praying it's just muscle spasms, but I am on Flexeril and doesn't really help. My Ativan does help if I don't use it everyday. Any person talked about a Doctor in Birmingham but he has an 8 month waiting period.

[bettyfl in reply to ttoney63]

Woman not family in my previous reply.

[ttoney63 in reply to bettyfl]

Is this doctor an ob/gyn and if so does he treat men

[bettyfl in reply to ttoney63]

He is a pain management dr at Midland Orthopedics believe it or not. I kept searching for years and he is on one of the pudendal websites I think or someone mentioned him. I am sure he would treat a man since he is pain management. If you email him he will or his nurse will reply to you. They have been a team for many many years they told me. She is also a very nice person.

[ttoney63 in reply to bettyfl]

I will email him. If he can help me it would definitely be worth the drive.

[ttoney63 in reply to bettyfl]

I have emailed Dr. Redmond's office for more info. I hope to hear back from him. Do you have his direct email? I appreciate all your help. This is the first time in 8 years I have been able to speak with people that know what I'm going through. Thanks everyone.

[ttoney63 in reply to bettyfl]

I wrote to Dr Redmond and has retired. He recommended Dr Prologo in Atlanta but he is not listed on my insurance. I guess I will suck it up and try and see him anyway. Do you know of anyone else? Thanks for all your help.

[KaseyKat]

T

I would advise you to have a MRI or MRN of your pelvis. First find out the diagnosis. Then seek a nerve block to diagnose what nerve is causing your pain. Then pursue a treatment plan,

[ttoney63 in reply to KaseyKat]

I didn't think an MRI would rule PN in or out. I thought the nerve block was a diagnostic tool.

[KaseyKat in reply to ttoney63]

The MRI is to rule out any other cause such as a tumor for example. An MRN is an xrayed that can view large nerve such as pudendal nerve. The nerve block is used to diagnose nerve problem. Either way u need a diagnosis first in order to treat. Take care...

[Hidden in reply to ttoney63]

MRI and MRN are not reliable diagnostic tools. A nerve block is the diagnostic method used in the uk. The only way to 100% diagnose nerve entrapment is to see it during surgery.

[ttoney63 in reply to Hidden]

I'm not planning on having decompression surgery either way. So, having the nerve block will tell me if it's my Pudendal Nerve causing my problem. I might have the cryoablation or I may choose to consider more conservative treatments. I'm not sure at this point. I will know more after my consultation. Thanks for the information.

[ttoney63 in reply to KaseyKat]

I had the nerve block and my spasms, as I call them, stopped for 4 hours or so. I was going to have the cryo and my insurance denied my coverage. They say it's experimental and no evidence the procedure works. So, my Doctor is writing my insurance company again. Will wait and see.

[mjjohnson]

Did yu ever get this done?

How are yu now?

[shilohpup]

Hi there,

Im sorry Ive had them 3 yrs now ongoing what helped me was Epsom salt baths and pelvic floor botox that numbs everything for me for a couple of yrs and my gastorentologist prescribed Dicycoline for painful rectal spasms and I have a Eurogynecologist DR now they gave me hormone suppositories and a numbing creme to help with pain. My experience is family DRS dont understand I needed a specialist just a suggestion. Pain Drs have been good and also helped me with severe endometriosis pelvic floor dysfunction and vulyadania. Ive also had pelvic floor PT this was a great help also Feel better!