Wife has PN/PNE - things are rough

[nonsequitur]

lomlom,

<snip>

[stephanies]

Emotions, as you have described above, were the cause of your PN pain, SN. Surgery was a failure for you. However, I disagree that that is the only cause, or even the most common cause, of PN pain. Between this site, pudendal neuralgia Facebook sites, and personal contacts with this condition, I can say that I believe there are many causes of this pain as I have seen people find many different successful treatment options. My best to all who face who have faced this pain.

Stephanies

[nonsequitur]

stephanies, I did not claim in my post that all cases of CPPS are due to a somatoform disorder.

In the absence of any cause besides sitting, it is unlikely that surgery to release a nerve that is probably not entrapped will be of any help.

Do you disagree with this statement?

Surgery is serious business, cannot be undone, and should not be taken lightly. Don't you wish you would not have done them. I certainly do. My piriformis is gone.

I have been contacted by 8 people on this forum that wanted to learn more about what cured me. I managed to help 6 out of 8. Believe me somatoform disorders are not rare.

The OP says that she suffered a massive emotional trauma in 2013. Why would you not consider seriously a somatic explanation when there is no other cause besides sitting long hours?

I have seen people find many different successful treatment options.

I think you can consider a treatment successful when the patient has been cured for at least 2 years and has discontinued all pain medication. I have seen too often the placebo effect at work. From ART, to cold laser, to Botox. I include surgery as well.

I read with great interest konedog's and RJR's posts, and totally believe them. They definitely are past the placebo period that affects all of us.

[rbzl]

I have been contacted by 8 people on this forum that wanted to learn more about what cured me. I managed to help 6 out of 8. Believe me somatoform disorders are not rare.

I would be interested to hear this as well then. We talk to Dr. Castellanos tomorrow about everything we've looked into, surgery and otherwise. Obviously surgery is a last resort, but we've gone through the process of exclusion the last year with everything else that has been presented as an option. If you have another idea, I'd love to hear about it.

The OP says that she suffered a massive emotional trauma in 2013. Why would you not consider seriously a somatic explanation when there is no other cause besides sitting long hours?

Her history of migraines/IBS preceded the 2013 incident by quite a bit, and there was nothing major before that. I/we aren't disagreeing that they all could be connected, but I find it unlikely that an event several years ago would cause such specific and intense symptoms now. I also admit that this is a bizarre illness to randomly come down with, aside from something like genetics that may have had a small possibility of predisposition.

[nonsequitur]

rbzl, My main thread is here:
http://www.pudendalhope.info/forum/view ... =36&t=6352

There is a lot of info on tmswiki.org (which I find fairly confusing but some of it is quite interesting).

Her history of migraines/IBS preceded the 2013 incident by quite a bit, and there was nothing major before that.

There is a predisposition to somatization. You cannot exclude other traumatic events in childhood (particularly in the pre-verbal stage). It is mostly people that manage to hide or repress pretty well their emotions. Let me tell you of my story and maybe that will resonate with your experience. <snip>

[rbzl]

Why two accounts? Looks like you "left" and came back shortly thereafter.

Looking through your post history, as well as others you've referred to, I don't agree that those methods are sufficient enough on their own to address the diagnosis. If a nerve is physically entrapped, no amount of meditation or prayer (depending on what you believe, I guess) is going to resolve the issue. Physically freeing up the nerve from the entrapment is what would be required to adequately address the problem. I appreciate that your intentions seem to be good, but to be fair, I didn't post asking for a diagnosis or treatment. I did ask about pain management recommendations, perhaps that was misconstrued as asking for other ways to treat or fix the issue. We feel that we've taken correct and reasonable steps over the last year to get to this diagnosis and treatment plan, however the injury managed to occur. We're also able to accept that sometimes there isn't a single, clear, inciting event for these types of things, and if there is, it may not always be known. All we can do at this point is get it taken care of.

We met with Dr. Castellanos on Monday, discussed surgery and other options, and after another exam we found it's only the right side that's significantly irritated. It was also the entire nerve, not just the clitoral branch that my wife previously thought (though that's where she experiences most of her pain). As a result, we're back to the transgluteal plan - the surgery that Dr. Castellanos had only performed 4 times was the surgery through the thigh to look at the clitoral nerve only. Statistics for the TG surgery are that 2/3 show improvement, 1/3 don't, and 1% experience increased pain. Their office has performed hundreds of surgeries and they're generally successful with some relief within 4-6 months, though they can take 18+ months to have a full effect. The surgery is scheduled a month out on July 20.

It sucks to have to sit around and wait another month, but it seems my wife's pain has somewhat leveled out now that we're not making as many trips in the car and she can rest most days. Still working on getting a house call referral for pain management, should happen within the next week or two. She had to discontinue Lyrica yesterday because she woke up with a swollen face, something that's happened when she's taken it ~8 years ago but we figured it would be worth another try.

Will keep updated as we continue along.

[nonsequitur]

Looking through your post history, as well as others you've referred to, I don't agree that those methods are sufficient enough on their own to address the diagnosis.

How do you know?

No amount of meditation or prayer (depending on what you believe, I guess) is going to resolve the issue.

Where did I mention meditation and prayer? Can you find the reference?

I appreciate that your intentions seem to be good, but to be fair, I didn't post asking for a diagnosis or treatment. I did ask about pain management recommendations,

1) I suggested in my first post that you look at Butrans.
2) Please don't patronize me.

[Violet M]

Hello Lomlom and Rbzl,

Sorry to hear you are going through this very rough time right now. It sounds like you have really done your homework and tried many of the available options that are available.

I would never presume to guess whether Lomlom's pain issues are due to an entrapment or related to stress and clenching of the pelvic floor muscles. You are in the middle of this and you have to follow your instincts.

I am one of the lucky people who has had amazing positive results from having PNE surgery but with that said, I have sort of developed a philosophy about PNE surgery over the 12 years I have been moderating the forum. Based on my own experience, I do believe pudendal nerve entrapment is a legitimate diagnosis but I also believe there are some red flags that point to a likely nerve entrapment that might be helped by surgery and unless you have some of these red flags you may want to think twice about surgery. Some of those are listed in the Nantes Team article that lists their specific criteria for diagnosing pudendal nerve entrapment.

http://www.pudendalhope.info/sites/defa ... iteria.pdf

I don't entirely agree with everything listed in that article because I didn't match the criteria exactly in that I was awakened at night by symptoms. I also had some sensory impairment and the symptoms were not 100% relieved by pudendal nerve blocks, even for a short time. I just had partial relief from nerve blocks.

Since it is so difficult to diagnose true entrapment before surgery, I think that surgery should be seen as a last resort and that you should only go into it if your situation is so bad that you are willing to take the possible risk of getting worse. I can hear the pain in both of you as you describe your situation and it sounds like you are at that point in your journey so I would never challenge you on your decision to have surgery.

I did notice that you said physical therapy helps. What type of PT did you try and in what ways did it help? Did you have myofascial release of the pelvic floor muscles via the vagina and was that painful or helpful? Did the therapist or physician press along the course of the nerve at the ischial spine or Alcock's canal and were either of those areas exquisitely tender and did it cause a pain flare-up? Pain that is most tender along the course of the nerve can be suggestive of a nerve entrapment. Is your pain primarily one-sided or is it diffuse on both sides? Unilateral pain is suggestive of a nerve entrapment. I fit both of these criteria. I could not tolerate myofascial release before surgery. It caused a prolonged flare-up. If myofascial release helps, then you have to wonder whether muscle tension is the culprit rather than nerve entrapment. I don't know how long you tried PT but it sounds like it wasn't helping you enough to keep your pain from progressing or to provide significant improvement.

My PNE resulted from starting a weightlifting program and due to my age at the time (around 45 y/o) my ligaments were somewhat hardened and sclerosed, according to Dr. Bautrant who performed my surgery. The exercise caused chronic ligament strain, pelvic misalignment, and consequent chronic injury to the pudendal nerve. Cutting the ligaments relieved the constant nerve irritation and allowed the nerve to heal. I'm not sure I fully understand how prolonged sitting can lead to nerve entrapment but Dr. Robert does list pain with sitting as one of the red flags for PNE in that article I linked to. Dr. Howard's brochure lists prolonged sitting as one of the causes of nerve entrapment although he does not explain the exact mechanism of how that happens. https://www.urmc.rochester.edu/medialib ... ochure.pdf

I wish you all the best with whatever treatments you pursue. If you just need a shoulder to lean on we are here to listen and to let you know we understand what you are going through.

Violet

[rbzl]

Where did I mention meditation and prayer? Can you find the reference?

In this post, you explain your technique for feeling emotions. I also looked through the TMS wiki fairly extensively, and the ideas are similar. Here's an excerpt from Wikipedia's explanation of meditation - while "meditation" may not be a literal word for what you described, I think we can agree that the general idea is the same:

The word meditation carries different meanings in different contexts. Meditation has been practiced since antiquity as a component of numerous religious traditions and beliefs. Meditation often involves an internal effort to self-regulate the mind in some way. Meditation is often used to clear the mind and ease many health concerns, such as high blood pressure, depression, and anxiety.

You also mentioned:

I read with great interest konedog's and RJR's posts, and totally believe them.

I read through konedog's entire thread the other day, and I believe he's made somewhere around 5 visits to Canada for ESWT over several years, but also attributes his improvement just as much to prayer. I have no problem with that - I'm sure it helps emotionally and spiritually during this difficult process for those who believe in such things, but we don't.

You've since edited other posts, so it's difficult to reference anything else. No matter - I appreciate the time you spent offering your opinions on surgery vs. other things and we'll leave it at that.

I do believe pudendal nerve entrapment is a legitimate diagnosis but I also believe there are some red flags that point to a likely nerve entrapment that might be helped by surgery and unless you have some of these red flags you may want to think twice about surgery. Some of those are listed in the Nantes Team article that lists their specific criteria for diagnosing pudendal nerve entrapment.

http://www.pudendalhope.info/sites/defa ... iteria.pdf

I don't entirely agree with everything listed in that article because I didn't match the criteria exactly in that I was awakened at night by symptoms. I also had some sensory impairment and the symptoms were not 100% relieved by pudendal nerve blocks, even for a short time. I just had partial relief from nerve blocks.

Since it is so difficult to diagnose true entrapment before surgery, I think that surgery should be seen as a last resort and that you should only go into it if your situation is so bad that you are willing to take the possible risk of getting worse. I can hear the pain in both of you as you describe your situation and it sounds like you are at that point in your journey so I would never challenge you on your decision to have surgery.

My wife can add more detail on her symptoms and the process for getting to the entrapment diagnosis, but it's of course a diagnosis of exclusion and there's no way to know for sure without doing the surgery and seeing what's going on in there. We're definitely at the point where we're willing to try it. When this started a year ago, I didn't think that I'd end up at home full time to take care of her, let alone that she would decline to this point in the first place. When the pain is so bad some days that she's asking me to knock her out or kill her to make it stop, how can it get much worse than that? If surgery has a chance to make it better, well, that's pretty much all we've got left at this point, so surgery it is. I'm optimistic about it, we don't really have any concerns aside from the long recovery time... but if it helps at all, it'll be worth it.

[kgb]

Hi:
I am wondering how your wife is doing? This cruel condition is dibilitating. I hope she has found relief from the surgery. I'm headed in that direction.

K