Wife has PN/PNE - things are rough

[rbzl]

By procedure for your wife soon, do you mean PNE surgery? Was her PNE the result of a prior surgery or an accident? Or it just happened one day? Please realize that PNE surgery is not the answer for everyone --to put it mildly. I know it quite well, I had 2 unsuccessful decompression surgeries.

Nerve block on Monday (ganglion, have already had several pudendal), and then probably PNE surgery after that if the nerve block doesn't tell us anything new. We know it's not a guaranteed fix, that recovery sucks, and that there are risks, but we've done pretty much everything we could before ending up at this point.

Looking through the Facebook group, quite a few people say that Dr. Hibner's surgery helped, though a lot of them had issues with mesh and we don't. We also talked to Dr. Castellanos about the surgery, he did tell us he's only done it 4 times and that the most similar case to ours (age, onset, symptoms, etc) did end up helping. Biggest concerns are recovery time and likelyhood of infection.

[nonsequitur]

he did tell us he's only done it 4 times and that the most similar case to ours (age, onset, symptoms, etc) did end up helping.

You should very seriously ask to talk to that patient and make sure that patient is at least 2 years post-op.

What puzzled me on the facebook group is the number of relapses. Patients that initially claimed to be better but then slowly revert or experience different pain symptoms. I have not been on that group for more than a year so I don't know the current situation. I just recognized myself in so many post-op patients. A lot of the positive posts are wishful thinking IMO when you see the reality setting in later.

Again, I speak as someone that had 2 PN surgeries. The recovery from my 1st surgery was horrific and ultimately left me in significantly more pain.

Have you considered a neuromodulator or pain pump as an alternative?

[rbzl]

I understand the concern - obviously everything has risks and potential benefits. The problem seems to be that we're dialing down on options now that the diagnostic blocks, MRIs, etc. indicate that this is likely what's going on (essentially through exclusion). There doesn't seem to be much else we can try at this point - nerve blocks help but only for a few days, RFA didn't help, pain meds help a little (and different ones would likely help a lot) but that isn't a long-term solution, etc.

Would love to try a pain pump or neurostimulator/neuromodulator - can ask about them next time we talk to Dr. Castellanos or once we sort out the house call situation next week. I'm not going to bother asking the current pain center. Whatever we end up doing, the hope is that it's significant enough to get her out of bed. We're both fine with whatever works to do that.

[nonsequitur]

From what I understood, your wife did not have prior pelvic surgeries. No accident. She was not a long distance biker I presume.

How did she get PNE?
Does Dr. Castellanos offer an explanation?

[lomlom]

Wife here, rare moment that I'm awake.
Ganglia impar block didn't work, pain center literally gave me a refill and said they don't want to see me again. Saw an in home doctor yesterday, but he said it could be up to three weeks before I get someone for pain management. Appointment Monday with Dr. C to talk about surgery.

As for how this happened, no one knows. No known injury, no surgery. It happened suddenly (though not nearly as bad) while driving home from a job interview. Felt like a kidney stone, which I've had. Wish it had been that...
The only thing we can think of is that I used to sit A LOT. I was on my computer pretty much all day every day. I had also just driven from Denver to Seattle, and then Seattle to Phoenix as well, and I unknowingly clench my buttocks while driving.

Husband forgot to mention - since it seems only the clitoral branch of the nerve is the one with the problem, Castellanos wants to do surgery with an approach through the front thigh (don't know medical term). He's done this only 4 times, 3 successfully. I'm a bit scared/worried, but at this point it seems like the only option left, and I really don't want to keep living like this too much longer...

My husband has been applying the topical cream with gloves on so my sensitive skin doesn't rub off, that makes me sleep around 18 hours a day. I wish I could sleep all 24 since it's the only time I don't hurt.

[nonsequitur]

lomlom,

You suffered from migraines, IBS, and now pelvic pain. Migraines, IBS, and vulvodynia/clitorodynia are often linked to a somatoform disorder.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4033442/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4253363/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4014358/

Did you have a traumatic event in your childhood? Did you suffer from severe stress at the onset of pelvic pain?

If it is the case, surgery won't solve your problem. Quite the opposite in fact.

It was my case BTW. Needless to say surgery did not help me.

[Patty]

How long did you try PT for? Have you tried any suppositories? In the height of my pain I got some relief from the Belladonna and opium ones. Plus a handful of oral medications. Enough to work 1/2 day. I had to take. FMLA for a very long time. I pray you get some relief... It sucks. I know.

[stephanies]

Hi Lomlom,

Your symptoms are only in the clitoral branch? Do you feel pain, tingling, hypersensitivity, PGAD, or a combination of these? Patty's suggestion about PT is a good one if you have a good PT. At times I get a tingling/hypersensitive feeling from that branch that (for various reasons my PT explained) is not true PGAD. Although PT for my regular PN pain (rectal, perineum, vulvar) has been unsuccessful, when my PT works on certain muscles the unpleasant clitoral sensations go away, sometimes for weeks or more at a time. It seems like you have researched your options and tried a lot of things. Dr. Castellanos came across to me as sincerely wanting to help patients and I wish you the best.

Sincerely,
Stephanies

[lomlom]

How long did you try PT for? Have you tried any suppositories? In the height of my pain I got some relief from the Belladonna and opium ones. Plus a handful of oral medications. Enough to work 1/2 day. I had to take. FMLA for a very long time. I pray you get some relief... It sucks. I know.

I tried a suppository at one point before I had the Botox, and the pain of putting it in was worse than the benefits it gave. Now that the muscles are relaxed I would be willing to try one again. As for PT, I went for a few months, and had good results. Was also using dilators. There's no way I could get there or do it though with the amount of pain I'm in.

Hi Lomlom,

Your symptoms are only in the clitoral branch? Do you feel pain, tingling, hypersensitivity, PGAD, or a combination of these? Patty's suggestion about PT is a good one if you have a good PT. At times I get a tingling/hypersensitive feeling from that branch that (for various reasons my PT explained) is not true PGAD. Although PT for my regular PN pain (rectal, perineum, vulvar) has been unsuccessful, when my PT works on certain muscles the unpleasant clitoral sensations go away, sometimes for weeks or more at a time. It seems like you have researched your options and tried a lot of things. Dr. Castellanos came across to me as sincerely wanting to help patients and I wish you the best.

Sincerely,
Stephanies

Dr. Castellanos (who I really do like) thinks what I have is very similar to PGAD. It's mostly pain, shooting/stabbing, burning, and hypersensitivity. When this first started I had to be careful not to get aroused or my pain would get worse. Washing that area is a nightmare. While me PT helped my muscles, it never seemed to help the nerve, but perhaps she just wasn't focusing on that area?

lomlom,

You suffered from migraines, IBS, and now pelvic pain. Migraines, IBS, and vulvodynia/clitorodynia are often linked to a somatoform disorder.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4033442/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4253363/
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4014358/

Did you have a traumatic event in your childhood? Did you suffer from severe stress at the onset of pelvic pain?

If it is the case, surgery won't solve your problem. Quite the opposite in fact.

It was my case BTW. Needless to say surgery did not help me.

I understand that surgery may not fix me, but at this point it's worth a try. Somatoform disorders don't have a cause, where as at least my migraines did. Every woman in my family gets them, mine stopped being chronic when I got my wisdom teeth taken out and was on steriods to stop the pain cycle. My aunt and grandmother also had GI issues, so that may be genetic as well.

No major stress when this started, no traumatic events in childhood. I was actually a really healthy kid. I had a very traumatic event in 2013; I dealt with mental, but no physical ailments during and after that time. I was trained in biofeedback in high school, I've been practicing that along with meditation and general relaxation since this started. It helped a little before I got the Botox, but not now, besides to help with my stress level.



I'm planning on asking dr. C about short pulse radio wave therapy, see if that's an option that might work. Hopefully I can get a pain patch and/or something else to control the pain as well. I've been in bed for about two months, to say I'm tired of it is an understatement!

[Aristocat]

Maybe you've read I tried to explain PGAD with a special model of a Kundalini activation how it is called in the East. A Kundalini activation is a traumatic stress experience that sets the nervous system for a long period in a hyperarousal state and can happen sometimes very suddenly. The literature writes about serious mental, but also physical - I call it - phenomenons. The mental problems have nothing to do with mental disorders. The physical problems can often occur in the whole body and so many people develop PGAD.

You have trained biofeedback and experienced a trauma in 2013, and, if I understand it in a right way, you meditate. This is an ideal combination to cause such an activation in the nervous system. In my opinion more the limbic system is involved than the pudendud nerve. I'm sure there is a systemic problem of the whole body, when PGAD is involved.

Perhaps the trauma of 2013 is the key of your terrible feelings. Perhaps the stress was to much for your nervous system and now is changed in traumatic stress and with it in a psychosomatic disorder. Sexuality and pain are close together in the brain and so also in our bodies.

Please watch very carefully whether meditation reduces your stress level. In the PGAD is well known and scientists write about this fact that altered states of consciousness strengthen the symptoms. Not in all disorders meditation is a healing way. We have to look at it very differentiated. In the case of PGAD it is possible that it forces sexuality what makes things worse.