His and Her Health

Physical therapy should be one of the first things they try. And again, it so is vital to be thoroughly checked out before going in for a surgery, no matter what kind of surgery it is.

There is no pill that performs a 'nerve block.' There are some medications that can help with neuropathic pain. However, a nerve block is an injection they do next to the nerve.

Make sure you get checked for endometriosis, adhesions, leg length discrepancy, pelvic misalignment, SI joint dysfunction, inflammatory disease, pelvic floor dysfunction, pelvic neuralgia (including pudendal neuralgia), cancer, and cysts/tumors on your spine to be sure the cause isn't one of those things. All of which can produce this sort of pain.

These conditions are not in peoples heads. A psychologist is not going to be able to cure this. Yes, there are some people who expect pain and in turn have a physical tensing reaction. And there are some of those whose catastrophic thinking can make their condition worse, as in any condition really. The truth of the matter is that the physical ailment is what needs to be treated before the pain will go away.

This surgery has a very low success rate because in most cases, the problem has not actually been correctly identified and fixed. I imagine the only reason it tends to work for some people is because of dermal problems causing their pain, which tends not to be the cause in a majority of patients.

Check out some of my more recent previous posts. There is a lot of information included as to possible causes for this sort of pain. All which should be explored extensively. Pelvic Floor Physical therapy can help with this sort of thing a lot. Regardless of the cause, pain tends to cause muscle tension which needs to be treated as well or it can make things worse. I wound up having pudendal neuralgia, and the vestibulectomy made me much worse. I wish I had the correct diagnosis prior to having the surgery. Please look at the last few posts and have those things checked out. It is important to have the correct diagnosis as to what is causing the pain and have that treated. I made the mistake of cutting into my body without the proper knowledge, and have irreversible damage.

Cindy

Hi,

There is no loss in sensation for me from the pulsed radiofrequency nerve ablation I had done to the pudendal nerve. I asked my doctor about doing the pulsed RFNA to the ganglion impar, because my nerve blocks there helped with the superficial external pain. However, he said doing the procedure on the ganglion impar was difficult because the nerves are so small. Instead, he said to consider a set of ganglion impar nerve blocks. Fortunately, I seem to have relief of external pain from two blocks of the ganglion impar, and the pulsed RFNA to the pudendal. I am at this point so tired of going in for procedures, that I didn't follow up for the set of nerve blocks to the ganglion impar he suggested. Things are more tolerable now. I've had a lot of nerve blocks! And two rounds of pulsed RFNA to the pudendal. They have helped my pain to the point of where life is worth living again.

Pulsed RF to the pudendal nerve is a new procedure for that particular nerve, so it might be hard to find someone with experience doing it on that nerve. But, its a common treatment in pain clinics for other nerves.

I also recommend finding a very good physical therapist. Because really, the nerves and the muscles need to be treated at the same time.

I'm not off daily medication. I take desipromine daily. I don't know about tapering off. It would be great but I am too afraid to try. For sure though, the pulsed RFNA and physical therapy really helped. I feel like the vestibulectomy surgery is like cutting your arm off because your finger hurts. Why it seems to help some people, is a good question. Perhaps it was more of a dermal (skin) problem for some people. There are many causes for pelvic pain (including pelvic surgery like hysterectomies, pelvic slings, etc.), and it is extremely difficult to diagnose correctly. Sometimes it is a surgical trauma, or a fall, or an autoimmune disease. Sometimes there are leg legnth discrepancies. These can be genetic, or caused by SI joint issues. There could be low back issues or tumors or cysts on your spine. Adhesions. Endometriosis. There could be damage to nerves from surgery, falls, or chronic infections. Etc. (A vestibulectomy isn't going to help with any of those things at all). Typically though, there are atleast issues with nerves and muscles. This is especially true because muscles that are tensed up constantly because of pain press on nerves which causes more pain. That is a result of whatever the cause is. And those are the things that should be treated too.

I am unclear on what the initial cause of my pain was. But I do know the pain was debilitating for me after the vestibulectomy. I think the retractors, or the swelling put pressure on my pelvic nerves. I also think giving my superficial nerves a haircut didn't help any. I too am waiting for a decision for disability, and am unable to hold a job full time. Doing office work and sitting/commuting don't work well in my lifestyle anymore.

Treating the pain loop for me helped a lot. The pulsed RFNA hasn't given me any loss of sensation. Just less pain.

I think having this sort of condition can affect libido, for sure. Its a challenge. I hope I answered your questions. Please feel free to post here again if I left something out or I can help.

I really do hope you give ice/heating pads, physical therapy, nerve blocks, and pulsed radiofrequency nerve ablation a chance. Along with lifestyle changes, like stress reduction, avoiding sitting, using cushions, stretching (properly) etc. Those things really have made a huge difference for me. If you can, get the book 'Ending Female Pain.' It has been incredibly helpful in teaching me how to help manage my own self-care, which I think is so vital in pelvic pain disorders.

I did have some improvement with this surgery in the pain I felt prior. However, it gave me a whole new world of new pain that I hadn't previously had. As I have pudendal neuralga (and muscle dysfunction as well as issues with my SI joint), I had pain at the vaginal opening, which is very similar to vestibulitis. Pudendal neuralgia should absolutely be ruled out. I believe in many instances it is what actually causes this pain. It causes pain, which then upset the muscles, which tense up and further irritate the nerves.

I feel it is my responsibility to go to a forum where people look for information about a surgery and tell them to carefully consider it. Having gone through this surgery and suffered the consequences, people should. know. There aren't just a few of us who were made worse by this. If you were in this position you would be doing the exact same thing. I absolutely will tell people I think this is a horrible and mutilating surgery. If you are interested in what the surgeon actually does to perform the procedure, there are very detailed photos at sexualmed.org/index.cfm/sexual-health-treatments/for-women/vestibulectomy/vestibulectomy-photo-gallery/

All of the other options should be done prior to even considering this surgery. Most surgeons do not do this surgery because it is very risky, and has a very low success rate. While I have gotten to be much more functional than I was after the surgery ($10,000 later out of my own pocket), the ends did not meet the means. Had I known what I now understand, I would not had proceeded with the surgery. People are too quick to cut into their bodies these days, without considering the consequences, and without trying less invasive (and sometimes holistic) measures (such as PT). It is very unfortunate there is not yet a more standard way of treating patients with pelvic pain. I think a lot of people would not have unnecessary surgeries if there were. And yet there is still much more to learn about pelvic pain and more advances to be made.

Beyondbasics (Amy), I am reading your book currently. I go to the pelvic health and rehabilitation center in San Francisco for PT (they are fantastic!), and am reading the one you gave to them while I wait for my appointments. Very good stuff in there. Also, thanks for being the first person to encourage me to give PT another chance. It changed my life for the better. I think if I had not gone I would still be bedbound, or worse.

I absolutely believe people should in fact be scared of this surgery. Think twice. Think three times. Go to a pain doctor before getting this surgery. There are so many things that should be looked at as to what is the root cause of the problem. Try physical therapy. Try lifestyle modifications. Try oral medications. Ice. Nerve blocks. Pulsed radiofrequency nerve ablation. This surgery has ruined my life as well, including many other people. It is very rarely successful. I had very similar issues to Lulu. Became completly debilitated from the surgery. Seems to be the case with most people who have it. It has been such a struggle to get my life back to even somewhat normal. I was waaaay worse after this surgery.

People should in fact go to a pain specialist prior to this surgery. There are too many other things to rule out (such as pudendal neuralgia, cysts, tumors, skeletal abnormalities, pelvic floor dysfunction, compressed disks). It is irresponsible of surgeons to not require this prior to surgery.

Blocks helped me temporarily. They aren't a cure though. They are mainly used as a diagnostic. If you have relief from them, even if under 24 hours, the next best step is probably pulsed radiofrequency nerve ablation.

When all this started, I didn't have pain with sitting. However, I had pain when touched. After the surgery, I can still sit, but it does flare up my symptoms. I use a cushion now with a cut out, which helps some, but I still avoid too much sitting.

I believe the pudendal nerve does cause these sorts of problems. I think pudendal neuropathy is widely underdiagnosed. And unfortunately, it is difficult to diagnose. In my case, they were able to see the nerve inflamed on the MRI, but that is a rare find. You could have other things, like a compressed disk, a cyst or mass on your spine, a labral tear in your hip, a small abdominal hernia, issues with your tailbone. I have found ganglion impar blocks useful. They help reset the sympathetic nervous system, which sometimes feels pain when it doesn't know how to shut off. You could have SI joint issues, which torque your pelvis and put pressure on muscles which then irritate nerves. I can't stress enough how important it is to see a pain specialist for chronic pain! Those things are all important to check out.

Desipromine does have a drying effect on the body. I take it. I've been told to try and make a goal to drink enough water everyday. 64 oz of water or so a day. This can be included in fruit and veggies. For dry mouth, my aunt chews gum a lot. Might be time to find a doctor that specialized in pain if your physician is overwhelmed, and you aren't responding to much. Having the pusled radiofrequency of the pudendal nerve helped me a lot. Needed to be repeated though, but totally worth it. Also, ganglion impar block.

I had the vestibulectomy. Worst decision I've ever made! Made things 100 times worse for me. I wound up being completely disabled, and have spent the past year and a half between jobs because of my pain. I did have some 'minor' improvement in some areas, however, it was not worth the new problems it created. Turned out I had pudendal neuralgia, which I believe is basically what causes most of these sort of issues.

Do consider the pulsed radiofrequency nerve ablation, along with seeing a good PT. Those have been fantastic for me in terms of my recovery.

Botox really only helps the muscles relax if they are overtense. A good PT can help with that. However, sometimes nerve fibers can tell muscles to tense if they are irritated or injured or what not. Thus, botox would help them relax for as long as the treatment is effective. Really though, the muscles and the nerves need to be treated. Try and find a pain clinic to do a guided pudendal nerve block. If that is effective at all (usually only real relief is for 24 hours or so) it is a sign that it is the pudendal nerve. Treatment for that nerve can be pulsed radiofrequency nerve ablation. However, that may need to be repeated (such as in my case). Also, I had a ganglion impar block done. That seemed to help for a couple months. Next time I go to the doctor I am going to ask about having the pulsed radiofrequency nerve ablation done to the ganglion impar nerves.

I too thought of botox. I have gone to a very good urogyn who specializes in pelvic pain. He does do botox. However, he wound up discouraging me from doing botox. He says it is expensive, and even with a letter to the insurance company, it is rarely ever covered. He gave me valium supposetories, and that seems to help with my pelvic floor dysfunction. I haven't heard of botox being used as a treatment for nerves, but I suppose its possible. Knowing this possibility, I would rather do the pulsed radiofrequency nerve ablation rather than put a toxic substance in my body that isn't proven to be effective in this sort of thing, especially since insurance won't cover it.

Pulsed radiofrequency nerve ablation is a now common way to treat nerves. It is new to the pudendal nerve, but it has been very effective for me in terms of relief. I also take desipromine daily, and vicoden as needed.

I take desipromine. I don't recall feeling any significant difference until I was on 75-100 mgs. daily. I didn't notice any side effects of it other than dry mouth. Also, it is known to cause constipation. So I take and OTC stool softener daily with it and I have upped my water intake. I've done well on it.

Yes, I had the pudendal nerve block done first. Stanford required it as a diagnostic. Then they did the pulsed radiofrequency nerve ablation. Then, they did the ganglion impar block. I'm not sure how much I would had noticed the ganglion impar working had I not had the pudendal nerve PRNA done first. The ganglion impar helped with a small amount for me. It removed all of my external pain, which had previously not been responsive to treatment.

Having a surgery like this causing a 'guarding' response. It is very likely to have pelvic muscle tension, lower back, thigh and hip tension after something like this.

My doctor who did the surgery also said I was healing well. I had another doctor who specializes in female urogyn pain say that I did heal really well. You can heal fine, but there is still scar tissue no matter what, like in any surgery. Its tougher skin that has adhesions/constricts. This sort of surgery took tissue out, and puts different tissue on top of it. It's just common sense.

If you don't like that PT go to a different one if you can.

I have spent thousands on PT, and it was worth it. I figured, I couldn't afford NOT to do it.

Keep in touch. Let us know how PT goes. Give it a couple months and see if you find any improvement. It isn't a miracle cure, but it does help, its necessary as part of my treatment, and over time, it has helped me increasingly.

I think committing to PT is a great idea. It helps incredibly if you have a good PT. Unless you have done PT already, you will have scar tissue from surgery. It's impossible to not have any. Scar tissue can be painful. I don't know how much faith I would have in creams. I have a whole gallon sized freezer bag of creams in my medication drawer. These issues are typically nerves and muscles. Creams can't do much for that. If you need pain relief you might try a tricyclic antidepressant, like Elavil (amitriptlyne) or Desipromine. Going to a pain clinic isn't a bad thing. They were the only people who were able to help me! Other doctors may overlook things that pain docs search for. It was such a relief for me not having to run around between different doctors who had no idea how to manage my pain, and no plan.

Don't do a nerve block without it being guided (CT/fluroscopy). It can be very painful, and potentially harmful to do so without proper guidance. The nerve could get knicked, further damaging it, or they could miss the nerve completely, giving your doc false information in regards to your condition.

The ganglion impar block helped relieve some of my external pain that had been previously unresponsive. So that was good!

The procedure took about half an hour. Had pain relief for a day maybe. The pain then was knockd down a notch after that.

You likely have some scar tissue. Find a pelvic physical therapist to help deal with the tissue. The tissue itself can be painful, and having it broken up by a highly skilled pelvic physical therapist will help. However, breaking up scar tissue isn't the least painful thing in the world. PT can cause a flare up. Also, your pelvic muscles may be constantly tensing from the pain and trauma of the surgery itself. It's probably a good idea to see a PT for this.

Also, I highly recommend the book 'Ending Female Pain.' Really helped me take charge of some of my care when I have a flare up, and maintenance.

I went to Stanford Hospital Pain Management to have guided nerve blocks. They eventually did pulsed radiofrequency nerve ablation to my pudendal nerves. It helped incredibly. It is not yet the most common procedure for pudendal neuralgia, but very common for other refractory neuropathic pain. I really think it is going to be the next up and coming treatment for this.

I don't know if I had pudendal neuralgia prior to my modified vestibulectomy or not. However, my pain got much worse after the vestibulectomy. Don't know if a nerve was knicked or not causing this, or if the incredibly amount of swelling I had from the surgery pressed down on my nerves and upset them.

Go to the pain clinic. They know how to better deal with these sorts of things. They will likely want you to do an MRI do rule out tumors or cysts on the spine, or spinal abnormalities. It's a very good idea though.

In my opinion, if you are only having pain with penetration, it may just be scar tissue that needs to be broken up, with possible pelvic floor muscle issues. A highly trained PT can help with both.

You can go to womenshealthapta.org/plp/index.cfm#2w to find one certified in your area. If your insurance give you any issues about it, you can contest to them that there are no in network PTs in your area who are adequately trained in this, and tell them it is for internal work as well. I had to pay my PT out of pocket and be reimbursed later by subitting the paperwork to my insurance. I really think it will help. Stick with it! It helped me a lot as well.

I recently joined the facebook group Holly mentioned. You should check it out. Seems to be a pretty active board.

I have been doing really well the the pulsed radiofrequency nerve ablations.

It is very difficult to detect if you have PN via MRI. I just got lucky.

I do hope something works out for you. Might be worth going to a doctor who knows about PN and get their opinion.

I have heard autoimmune diseases can contribute to this sort of thing though.

If the muscles around your urethra are tight, a good PT should be able to help manage that. I really think it would be helpful to get the opinion of another PT.

The one that helped me the most is in San Francisco. The Pelvic Health & Rehabilitation Clinic. They are some of the best in the world regarding these issues. They also teach classes to other professionals, and are involved in the medical community.

When I was having horrible urethral pain following a UTI, I went to a PT who had been doing pelvic PT for 20 years. She couldn't get the pain to subside, but the Pelvic Health and Rehabilitation Clinic in SF could in one session!

I know it may involve travel, and it is not the least expensive. However, they have worked miracles in my life. I was completely disabled before I went to see them.They take out of town patients too. I think they see them over the period of a few days or so. Might be worth a shot. Atleast go see another PT to get their opinion, even if insurance doesn't cover it. I figured it was expensive, but getting my life back was worth it!

How did they test you for PN? Often, the tests really don't tell that much. Getting an accurate diagnosis is very difficult. You have to get a guided nerve block to really know its PN.

It's also probably a good idea to have an MRI done to make sure you don't have any abnormalities.

When is the other forum you're on of people with PN?

My PT found trigger points on my inner thighs. She says sometimes they can cause urethral pain ('referred' pain). So, the injections were to try and help get rid of those.

The body seems to find other places to tense up while it tries to protect and possibly compensate for other areas that have pain. Inner thighs are one place. Lower back can be another. Hips.

I do feel some better. Turned out I was just a couple days short of starting my period. Makes sense I guess.

Didn't turn out to be an infection this time. No nitrates were in the home test I did.

I am starting to not doubt that I will likely always have some level of pain. Just have to be thankful that its under much better control now than it was previously. Perhaps when they come out with better stem cell technology they will be able to teach nerves and cells to repair themselves better.

Holly, have you tried using ice packs? On a fairly regular basis I use them at night with a wash cloth between the ice and my skin. In the morning, I usually feel a lot better after that.

Not feeling so well today. The past few days in the evening I have been feeling urinary urgency. Then, today its been all day.

I had two rounds of trigger point injections in my stomach, and inner thighs. One today, and one last week.

I was worried I may have a urinary infection. However, I did the at home test, and it was negative for nitrates (bacteria) with a small amount of lukocytes (blood cells). It seems this is consistent for many women with IC. It is also possible I have some sort of autoimmune disorder, or blood from my urinary stricture. I did just about everything I could think of to try and deal with the pain/urgency. Hot bath, ice, daytime antihisamine (claritin), vicodin, drinking massive amounts of water, stool softener sorbitol (with the idea that maybe the nerves are irritated by constipation), had my boyfriend help me with some PT, and finially tylenol PM (which has a drowsy antihistimine in it). Blood cells in the urine with lack of bacteria can mean some sort of inflammation process going on. I am feeling some better, so I am thinking the nightime antihistime tylenol PM may have settled things down some. This is a very frustrating disease. Very unfortunate this is happening since I've been feeling so good otherwise.

I'm doing pretty well today. Had a rough couple of days because I was doing some exercise. Also, I think the steroid part of my impar ganglion block has caused me to spot some. I usually get atleast some flared up before my period. So, maybe thats why I had some flare the past couple days or so.

I'm doing good today.

People can get some relief from nerve blocks. However, they are rarely ever long term. The pulsed radiofrequency nerve ablation is really what has helped me tremendously. I've had to do a lot of research to find doctors and PT's who have the correct training to deal with my pain issues. It takes some time, but its worth making the effort to find the right doctors. It saves a lot of time, money and frustration in the long term. Plus, it can get you on track to getting healed!

Really, pulsed radiofrequency nerve ablation is not something uncommon these days. Just uncommon in the pudendal nerve, but hopefully that will change in the next 5 years or so. They standardly do a diagnostic nerve block though prior to going ahead with the procedure though. That is a pretty standard way for doctors to diagnose PN typically these days.

When I went to the pain clinic they did an MRI to rule out any tumors, cysts, or disk compression issues. If you haven't done that already, its worth doing. Sounds like you have a few things going on. I've read that some people with PNE have issues with pain radiating down their leg. Here is some info I was able to find on that: tipna.org/faq/IntroductoryFAQ.htm

Anyhow, hope things work out okay for you.

Make sure to tell the pain clinic about your other issues. They could be related, and they should know.

Pudendal Neuralgia does include nerve irritation. The difference between PN and PNE is entrapment. One is entrapped, and the other isn't. Both affect the pudendal nerve. Not every with PN has PNE. Another thing with nerves: nerves can cross talk.

Sex can cause pain. Lots of muscles and friction. Especially on scar tissue. Scar tissue can cause pain, and needs to be dealt with in PT. Needs to be skin rolled. Also, scar tissue can adhere to nerves. I don't have an issue with scar tissue that I know if. My PT has done a lot of skin rolling, including some there. It isn't hard or what not, and I don't see any scar lines.

Pulsed radiofrequency nerve ablation is common in pain management. However, its not common for the pudendal nerve yet. Pulsed radiofrequency nerve ablation is different from radiofrequency nerve ablation. They are similar, but not the same.

Blocks can cause pain if they are not used under sedation, and the nerve can get knicked if they don't do the block guided (under xray, etc). Also, there can be a pain flare up for several days from the procedure, and from steroids if used.

Post how your visit at the pain clinic goes!

Hi Holly,

I am doing okay. I'm not quite sure that the ganglion impar block did anything for me, atleast not just yet. I felt fine the day of the block. I now need to wait a few more days for the medication they injected to do its part. It didn't make anything worse. Perhaps it did take down my external pain a notch. Overall, I am really pleased with the outcomes I've had with the Stanford Pain Clinic. The pulsed radiofrequency nerve ablations have changed my life for the better.

I am supposed to follow up with them in April. They are going to do some trigger point injections where my PT recommended (in my inner thighs and lower abdomen). Hopefully that will take care of those pesty trigger points.

My pain is doing a lot better. I went out of the house on my own yesterday for the first time in months (other than for Dr. appointments). That's a very good sign!

I had several doctors, including a close family friend who is a urologist who I went to go see, tell me that I likely didn't have pudendal neuralgia. It is definately a frustrating disease, and something not easy to diagnose accurately.

I haven't yet heard of paraurethral injections, but I do hope you find some relief. Another thing I was thinking about with regards to your pain: You said that you started having frequency after your infection. Urethral strictures can happen after an infection. They can be caused by scaring from the bacteria. Strictures can cause pain and frequency issues. I have a stricture. However, I have been reluctant to have it fixed. Before I was diagnosed with pudendal neuralgia a urologist 'treated' it with urethral dilation. He didn't even tell me before hand that he was going to do that. It was a pretty painful procedure. I've talked to a urologist who specializes in female pelvic pain, and he told me he is typically against dilation. What it does is it stretches the stricture so that it is no longer impeding the urethral structure. It can help the pain (after healing from the procedure). However, the stricture can grow back eventually. There is also a surgery available to treat strictures, but again, I am hesitant to look into that seeming my last surgery on my girl parts went so wrong.

Anyhow, let us know how it goes!

I assure you, you don't have a mind body problem. You have a body problem!

I sometimes find when I am really flared up, if I take an allergy pill, things sometimes settle down a bit.

Urgency can be related to pudendal neuralgia. I had more of a pressure, and sometimes pinching feeling. Both are starting to settle down.

The major branches of the pudendal nerve can be palpated at 3 and 9 oclock. However, branches are all over. Here is a diagram:www.pudendalhope.org/sites/default/files...alePudendalNerve.jpg
The pudendal nerve is also in charge of the urethra, which might be the cause of your frequency issues. If you look at the picture, you can notice all the little branches that are all over. A vestibulectomy gives lots of those little nerve endings a 'haircut' as I think Agnes said before. Cutting a nerve can definately cause it to be irritated. Healing them is a slow process. Wish I knew all that prior to having the vestibulectomy!

Here is another image of the nerves that affect the pelvis. As you can see, many of the nerves listed are in charge of muscles, (please excuse my poor spelling) such as gluteous, piriformace, opterator, rectus, obliques, etc. Others relate to the labia and sensation.www.thepainsource.com/wp-content/uploads...th-femoral-nerve.jpg

If you go to a pain clinic, they would know about PRFNA. It has been a relatively common treatment for pain management for nerves in general for the past 15 years or so. The pudendal nerve is much newer to this sort of treatment, however, the procedure shouldn't be much different than with other nerves. Some physicians are reluctant to treat the pudendal nerve this way because there is a chance of incontenience. In Pulsed Radio Frequency Nerve Ablation (PRFNA) if this happens, it will only be temporary. However, with regular Radio Frequency Nerve Ablation (RFNA), which is a continuous 'zap' rather than a pulsed 'zap' any side effects will be permanent. Therefore the PRFNA is a better bet in my opinion. I haven't had any issues with incontenience. PRFNA is considered a temporary fix, lasting 3-18 months (unless the nerve heals completely in that time) and RFNA is more permanent. However, with regular RFNA, the nerve still can grow back years later, and may grow back in an irregular path, which would make it more difficult to treat later. I'm very happy with the PFRNA though.

When I first started PT, I had some success when I found a really good PT. Some are better than others. I am surprised your PT ruled out the idea of Pudendal Neuralgia simply because you didn't feel pain in one particular area. She was mistaken if she thinks that is the only place people with PN feel pain. She should know the nerve goes all over. Maybe try and find another PT and give them a shot a few times. Couldn't hurt anything. When I had my UTI I was in pain for 3-4 weeks I'd say. At the time I went to a PT who had 20 years of experience in pelvic PT. She was not able to get rid of the pain in several sessions, but when I went to a different PT office (the Pelvic Health and Rehabilitation Clinic in SF), it just took her 1 session, and I was waaaaaaaay better. Can't thank her enough.

I had more success with PT when I started the nerve blocks. It resets the nerves which reduces the level of pain and the steroid reduces the inflammation. I've had even more success with PT with the PRFNA procedure.

I think the process of healing has to be a multi-disciplinary approach. Treating the muscles or treating the nerves alone won't fix the problem. They need to be done together. Many people also have skeletal issues, such as leg legnth discrepancies, which can then affect the hips (which is near the pudendal nerve), and leg legnth discrepancies also affect pelvic muscles that are supposed to keep people stable. I also have fallen arches in my feet, which causes the pelvic muscles to work harder. Because of this I got shoe inserts, and my weight is distributed better now, which takes some of the pressure off the muscles/nerves. Also have issues with my tailbone being pulled to the right some (may be the muscles doing this). Each is just one piece of the puzzel.

The ganglion impar block is coming up on Wednesday. It is being done on the tip of the tailbone to those nerves. The hope is that the secondary 'sympathetic nervous system' may be still firing in reaction to the other nerves that were irritated. So, this nerve block should shut that process down temporarily, and hopefully reset the nerves, which hopefully will result in less pain. The ganglion impar block is not the most common block done, but is occasionally done in especially difficult pelvic pain cases.

I haven't returned to work just yet, but I think I will be ready soon. Got to find a job first! I'm getting back to a more normal level of functioning. Still involves being careful of the activities I do, limiting sitting and using a special cushion. I also do internal and external PT and stretching at home. Not as much as I probably should, but it helps.

The medical community is still up in the air about understanding and treating pelvic pain, leaving the patient to be their own advocate. I wish that I had the information I do now, prior to having a vestibulectomy. I found that gaining knowledge helped me to not feel so powerless. This disease has cost me so much. Time, money, frustration, tears, relationships, jobs. There is hope ladies. The journey is not an easy one, but there is hope. The reason I always tend to write so much is because I think the patient being educated is so vital in these sorts of cases.

Hiya,

The pulsed radiofrequency nerve ablation (PRNA) was done last week. The first few days have typically always been rough for me, but after that I usually do pretty well. The least amount of time I've had relief from the PRNA has been 3 months. They can last for 3-18 months, and if the nerve has had enough time to heal during those 'shut down' periods, when they regenrate, its possible to no longer have pain issues with the said nerve again.

I'm feeling better than I was prior to them doing the procedure bilaterally (on both left and right pudendal nerves). Not 100%, but noticable improvement. Good improvement. I am still going to proceed with the ganglion impar block because I would like to see if it will improve my pain at all. I now spend less time focusing on the nerve pain, and have noticed I have sacrum pain. I think its always been there, but just wasn't the leading pain symptom prior to the pudendal nerve pain relief. So, I am hoping this new block will help some. Crossing fingers.

If you are noticing a change in your pH, and that change goes along with your pain level, it is possible you may have some form of IC. Or perhaps an issue with oxylates (many people with vulvadynia do). IC is an inflammatory process. If you notice white cells in your urine pH but no nitrates, its likely caused by bladder inflammation. True IC is when the bladder lining is damaged and painful, which is extremely rare. Many doctors misdiagnose any sort of pelvic pain as IC.

During flare ups I have sometimes had white cells but no nitrates. Which means there was some sort of inflammation going on. I'm not sold on the idea yet that IC/bladder is a component to my problem though. This is because I tried the IC Diet, and still had horrible pain. But really, try the IC diet, and see if that helps. If it doesn't help, maybe try the low oxylate diet and see if that helps. Give them each a month or so, because I don't think the results would be immediate.

If you have IC and have a flare you can put a teaspoon or so of baking soda in a cup of water, and that should help calm things down.

Really check and see if any of the meds you are on could have some sort of strange side effect causing this. I found that after I stopped taking gabapentin I felt a little better.

One thing I wanted to mention. I have PN and I dont have pain when the area between the vaginal opening and the anus. The nerve more so runs/can be palpitated along the sides of the vaginal wall, at 3 oclock and 9 oclock, several inches in. Pudendal neuralgia can also cause a feeling or urgency for urination.

My pain doctors originally diagnosed it based on my symptoms. Prior to surgery, I used to have pain at the vaginal opening. Now, I typically only have pain where there were incisions if my symptoms flare up. My constant pain now is mainly urethral, and the skin between the clitorous and urethra.

The guided block is a typical way they diagnose PN. It's possible for them to do the diagnoses without it being guided, but its less likely they will actually get the medication to the appropriate nerve, which could give a false negative. But yes, blocks are mainly for diagnoses purposes. However, if done properly, the combo of numbing medication and steroid (anti-inflammatory) can help reset the nerve somewhat. Typically, each time the block is done, after the inflammation from the procedure itself dies down, the nerve signal less pain each time it is reset.

I was able to have a special sort of MRI done at UCSF where they were actually able to pinpoint my pudendal nerve inflammation at the ischial tuberosity. However, most MRI's are not able to catch this, and may not even show anything abnormal.

I'm sorry to hear your MRI is abnormal. However, if they can figure out that/which autoimmune disease is causing the problem, it is likely they can figure out a medication that can help. Keep us updated!

I would be sure to get second opinions, especially if the doc who is giving you info is the one who did your surgery. They have a lot at stake finiancially if you find out they did the vestibulectomy when you didn't really need one, you know?

I'm doing okay. Thanks for asking!

Monday I had my pulsed radiofrequency nerve ablation done on both sides. Again, I had some increased sensitivity for a few days. However, I now feel some more relief than I have in the past. I was a little worried I may have some (temporary) incontenience issues, but I haven't had any problems of that nature.

I do feel some decrease in the labia pain I've had between my urethra and clitorous. Not 100% better, but a good amount of relief. I still feel a little pain there, and a pressure sensation of my urethra. It is better than it was previously.

As usual, I've had some shooting pains post the procedure. This seems to happen for the first week or so after the procedure. Again, it hasn't been quite as bad a before either.

I've stopped taking gabapentin as of a month ago almost. I don't feel any different. I', still taking 100 mgs daily of desiprimine. I have to take a stool softener/laxative with it, because it does cause constipation, as well as dry mouth.

Right about now is when I am due for my period. I have not been feeling increased pain. The past two months prior to this month my period has just snuck up on me, as I haven't felt like complete crap prior to it. I do still have increase sensitivity/pain during my period, but I am able to take a vicoden with a aleve and I feel quite a bit better after that.

I am still going to go ahead with the ganglion impar block on March 23rd. Wish me luck!

I wanted to post some new info I was able to find. Discovered a list of Physical Therapists who have undergone pelvic floor physical therapy certification. You can find them by state. The website is www. womenshealthapta.org/plp/index.cfm#2w

The certification is called CAPP. Hope that might help in some of your quests if searching for a PT. I sometimes see Elizabeth Miracle at the Pelvic Health and Rehabilitation Center in San Francisco; who is on the list. Very good PT Practitioner for my Pudendal Neuralgia issues.

I would go to the pain doctor. I think all people who have an issue with chronic pain should. Their job is to manage pain, so they are the best. Also, in addition try finding a good PT. I have my physician as my second point of contact. I refuse to go back to the gyn that did the surgery on me because I feel as though she was irresponsible for not sending me to the pain clinic prior to operating on me. She should had known about the symptoms of pudendal neuralgia. She is a doctor specializing in vaginas! That's my opinion. You have to do what is best for you though.

When pain increases, its only natural for the muscles to tense up and try to protect the painful area. There is a muscle called the anal sphincter. It can cause pain. Also, scar tissue acn cause pain, and a PT can help break up the scar tissue.

Try and talk to the pain specialist about doing a guided nerve block. There has to be someone in their facility who has done a guided nerve block before. It's not an uncommon procedure. It does increase the cost though obviously to have a whole team of people and an anestesiologist. I asked for financial assistance from my hospital to help cover the portion of my deductable my insurance didn't cover.

I don't think my post appearance from surgery is all that bad. I am told my surgeon did a very good job asthetically. When it comes to this sort of thing, its important to be with someone who really loves you. Even then, its a hard position to be in. I still continue to have pain post sex, because of muscle and nerve irritation. I have less pain if I internally stretch, but there are still issues. It affects my sex life with my boyfriend. We don't have sex as often as I am sure he would like. It can be very hard to find a patient and understanding man. If you find a good guy though, he won't care what your girl parts look like. It's a part of who you are.

Hi Lulu,

I'm sorry to hear you are in so much pain. I too had increased pain with this surgery. It turned out I had pudendal neuralgia. I don't have buttock pain, or nerve pain in my thighs (or in my toes/fingers). However, I do know you can have pain from muscles/trigger points in your thighs and buttocks. Also, the sciatic nerve can cause pain in your legs and butt.

You might try finding a good physical therapist. I have had great success with the Pelvic Health and Rehabilitation Center in San Francisco, California. In my personal opinion, I think they are the best. I can relate to you. Prior to going to see them, I was sometimes wishing the end of my existence. They brought me back from not being able to move without pain. I still have pain, but their PT helps. Not all PT's are created equal. They didn't take my insurance, but I simply don't know what I would had done without them.

Also, I have been going to the Stanford Pain Clinic. They have been doing a procedure that is not new to nerve pain, but new to pelvic pain. It's called 'pulsed radio frequency nerve ablation.' They have been doing that to treat other sorts of nerve pain for years, and are now introducing it to pudendal nerve pain. I have done really well with it. I'm still not 100% but I am a lot better than I was after the surgery. They made me do nerve blocks first though. They can be done under anestesia, which makes them practically painless. I had to have the nerve blocks done prior to the pulsed radio frequency nerve ablation because it was used as a diagnostic tool. Basically, if I showed any relief from the block, they knew they were on the right path, and therefore would feel comfortable doing the pulsed radiofrequency nerve ablation on me. Make sure you have a doctor that does the nerve block under 'live x-ray' or 'fluroscopy'. It is more accurate. I would imagine if the procedure was done without me having twilight sedation it would had been painful. I think that is probably the pain people have talked about with the nerve block. There isn't a whole lot I think it can do to make things worse that I know of. A nerve block is just a needle injecting a numbing medicine or preferably numbing medicine with a steroid NEAR the (pudendal) nerve. Perhaps if the procedure was done 'blind' without live x-ray or fluroscopy there is a chance the needle could knick the nerve and insert the medication directly into the nerve. That might be a cause of upset. Or, they could miss the area of the nerve entirely doing it blindly, which would make the procedure not work at all. The numbing is similar to when you go to the dentist and they numb you prior to dental work. It's numb for maybe half the day, then goes away.

With a nerve block, if you feel relief for even an hour or two, it means they are on the right track in diagnosing you with pudendal neuralgia. Its more of a diagnostic tool. If they also add steroid (which I think is the better way to go than just using it for purely diagnostic purposes with the numbing medication alone), it can help to reduce inflammation.

Is it possible the finger-tip pain and toe pain is a side effect of any medication you are currently taking?

I will be going in for a lateral set of pulsed radio frequency nerve ablation the first week of March. My left side still feels fine, but it was done months after my right side had the ablation. My right side is starting to bother me again, so they are going to go in and zap both nerves at the same time to get them on the same track. The procedure can help anywhere from 3-18 months (or possibly forever if the nerve heals while it is still stunned). It stuns the nerve so that it doesn't keep signaling pain, giving the nerve time to heal, and the muscles some time to relax and stop tenseing up from the nerve pain. If zaping me on both sides at the same time doesn't help my urethral pain and pain between my urethra and clitoris they are going to do a ganglion impar nerve block on me (its in the tailbone). Those things might be a good direction for you to give a try too. The Physical Therapy and the pulsed radio frequency nerve ablation have saved my life. I hear you Lulu. I know its hard, but hang in there.

I hope that I will have a 100% pain free life from this, but I'm not going to count all my ducks just yet. It takes some getting used to having to manage some life adjustments. I now avoid sitting, driving and other aggravating factors. I sit on a cushion with a cutout from 'Theraseat.' I'm still getting used to taking it around with me everywhere, but it does help. I tried other cushions, but this one works for me the best. Might be worth giving it a shot too.

I talked to a therapist for a number of months after I realized my modified vestibulectomy surgery made things worse. Talking to someone helped me manage a little better. I also started writing a book. It's good to have an outlet of some sort outside of your close friends and family.

Get the brain and spine MRI though. It's good to make sure you don't have anything obvious, like a cyst impeding on the nerve or spine.

Keep us updated.

The surgery was a horrible choice for me. Made things a whole lot worse. I became an unfunctional human being from the surgery. It really made my life miserable. Since the surgery, I have either not been able to work at all, or have had to quit working because my body can not tolerate sitting/standing for so long.

I have since been diagnosed with Pudendal Neuralgia. One of its main symptoms is pain with sitting. It can be very difficult to accurately diagnose, but I have been lucky enough to have found some specialists at UCSF who have a special MRI scanner that were able to pinpoint my inflamed pudendal nerve.

I recommend you try physical therapy from a highly trained physical therapist and see if that gives you any relief. Also, try going to a pain clinic. Have them give you GUIDED nerve blocks with anestetic and steriod to your pudendal nerves to see if that helps. I really don't recommend cutting your body.

I have also had pulsed radio frequency nerve ablation to the pudendal nerves, which isn't widely practiced just yet for pelvic pain. I've done well with that. Not 100% relief, but significantly better. They also are going to do ganglion nerve blocks for me starting in March or April.

I had a partial vestibulectomy. I never would had done it had I known then what I know now. Wound up making things a lot worse for me, and was basically unnecessary.

The pelvis is made up of nerves, muscles, bones, and some organs. The organs are all pretty close together in there. Pelvic pain that isn't resolved by treating infection or other commonly known disease is likely caused by muscle dysfunction. Sometimes muscle dysfunction can start from bone dysfunction, such as one leg longer than the other, or a fall or injury of some sort. Muscle dysfunction can lead to nerve dysfunction. Or sometimes nerve dysfunction can be caused by chronic infection or injury. Anyhow, when left untreated, they all can occur. Muscles can eventually put some strain on the bones, causing them to be out of allignment. Strained muscles cause trigger points, which can occur in your pelvis, abdominal muscles, inner thigh muscles, over the pubic bone, etc. These can refer pain to other locations in your body, such as your urethra, vagina, etc. Physical Therapy can help a lot. Cutting out a portion of your body isn't going to help any of those things.

I had surgery and I think the fact that because a lot of nerve fibers were cut with the surgery, along with all the pelvic inflammation from the surgery pressed on all my pelvic nerves, and the pain from the surgery itself caused even more of a muscle 'guarding' pattern all made things worse for me.

I have also heard of people having a labral tear in their hip having issues with pelvic pain. Might be worth getting that checked out.
Prior to surgery I was able to maintain a full time job. Now, I am going to try and make a disability case.

Glad to hear you are getting some answer Agnes. I wound up having issues with the pudendal nerve as well. Also, my puborectalis muscle is waaay tight. Its function is to tighten when sitting (to avoid incontenience), and it relaxes quite a bit when standing. From what I understand, it is possible for it to irritate the pudendal nerve.

I hope you don't give up on PT completely. PN can have some improvement with PT. The muscles can get in such a state where they become stuck in this tensed up position. Having them relax is important. I expect flare ups from PT when I go. I have them for a couple days sometimes. It's important to communicate that to your PT so they can be less aggressive the next time you see them.

It's important to find out some of the possible contributing factors as to why the pudendal nerve may be irritated. The surgery was also a major factor to me. I also seem to have some sort of torque on my pelvis, one leg shorter than the other by 1/2-3/4 inches (which can put extra pressure on the hips), and flat feet (which cause the pelvic floor muscles to work harder). In addition to this I have horrible posture (which I need to work on). One thing that helps me is wearing foot prostetic inserts. They support my arches. I am also supposed to get a wedge to help my shorter leg be the same length as my other leg.

Rule out via MRI things such as tumors or cysts that could be pressing on the pudendal nerve. While those things are awful, atleast if found they can typically do something about them relatively easily.

I use ice on several nights a week. Seems to help with some of the exterior pain.

As for my update:


I tried the valium supposetory for the first time yesterday. Seemed to help me after getting things all out of whack from rock climbing.

I went to the pelvic pain specialist and he wants to do trigger point injections a few days prior to my PT once a month prior to considering botox.

My pain doctor at Stanford is going to repeat the pulsed radiofrequency nerve ablation on both sides of the pudendal nerve. It has really been what has helped me the most thus far. However, I still seem to have the exterior pain under the clitoris and the internal urethra pain. They want to do a ganglion impar block on me probably in late march or sometime in April.

PRFNA is pulsed radio frequency nerve ablation.
RFNA is radio frequency nerve ablation.

My right side is still not happy. Not as bad as it was, but still not happy. I think the procedure may have to be repeated, as on the right side it was done 3-4 months ago. The procedure, even after being done now on both sides hasn't seemed to of helped the central/urethral pain.

I was supposed to see the very good urogyn this past week but had to reschedule because I am having issues with my insurance. Just switched insurance companies, and they don't have me in their system yet and I don't have ID cards. I plan to reschedule and hopefully get in this coming week.

Had my time of the month again. It wasn't as bad as it has been in quite some time, which is good. Mostly, I just had some more frequent shooting pain. I still don't exactly feel well though.

Anyhow, I'll keep in touch.

Holly, I think if you bought it from the IC Network, they will let you return it. Or that cysto-protec stuff may have a guarantee. I think you'll do well with PT. Gotta give it a chance.

Hi Holly,

If the marshmellow root doesn't help, its likely not IC. Atleast, that is my opinion. It is supposed to be very effective in helping coat the bladder, which is the main reason why IC patients have so much pain.

I think in terms of urology, my urethra is what bothers me. PT seems to be the only thing that helps me with that. I don't know if I can say I have any completely pain free days with that. Pudendal Neuralgia can cause urethra pain, and feeling as though something is 'stuck' in there or in the vagina. I guess I could say I feel a sort of pressure of the urethra. The dorsal nerve which is a branch of the pudendal nerve can cause that sort of pain. Also, trigger points in the abdomen and inner thigh muscles can as well. And well, I would imagine just tight pelvic floor muscles in general. My urethra pain is very deep. The skin can sometimes be irritated externally, and I sometimes have discomfort with urination, but overall the pain feels to be deep inside the urethra. Could this be part of your pain?

I may ask my pain specialist about performing the PRFNA on the dorsal nerve, but I don't know if that will make a difference or not seemingly they already treated the pudendal nerve, which it branches off of.

My PT also mentioned something about the posterior cutanious femoral nerve in regards to my case. I want to do more research on that.

Are any of the side effects of the medications or vitamins you are currently on include any sort of bladder symptoms? Do you take anything which has a lot of caffiene?

I hope some of that info is somewhat useful to you.