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Does ANYONE else have PHN in the vaginal area (the pudendal nerve).

Posted , 6 users are following.

trish82895
trish82895

It was bad enough getting Shingles in this part of my body - excruciating of course; but now, 5 years later, the intense burning and pain of PHN is still horrific. It's like sitting on a cactus or having rotating knives inside me. I've tried all kinds of meds, pain management and acupuncture - but nothing helps.  I was on high doses of Gabapenting (Neurontin) but know that research has linked mega doses of this medication with early onset dementia.  I have recently had a month of 'flu & bronchitis and wonder if this illness may have exacerbated the PHN?  It is definitely even worse than ever and the accompanying fatigue is overwhelmoing.  I feel totally alone because I have read no reports of vaginal Shingles/PHN nor encountered anyone else who has been unlucky enough to have had it manifest in this area. 

2 likes, 16 replies

16 Replies

  • Azbella
    Azbella trish82895

    Posted

    Omg , my heart goes out to you ... I fell off the top of a 6 ft ladder & 5'8" total 11.8 feet to floor I broke my L humorous , dislocated the shoulder ... A nightmare for 2 yrs .?i believe I had pain from the fall . I was unable to squat . Felt like burning knives in the Peri area . Finally it let up but recently it has returned , so much do I can't walk upstairs with L led leading .. I too take gabapentin , 1200 Tylenol . Soma for muscles. But when it acting up. I can't hardly move. Hugs
    • trish82895
      trish82895 Azbella

      Posted

      What a coincidence, Azbella! I too fell from a very tall ladder (in 2010) & broke my left foot, my left wrist & left shoulder, & damaged the orbital area of my left eye!! Actually, the ladder slipped as it was wooden & I foolishly set it up on a hardwood floor without using a non-slip mat! Sheer stupidity on my behalf! I was beginning g to recover from those injuries & surgeries (now have titanium plates & screws holding me together!), when the blessed Shingles & PHN struck!! Agh! Thank you for your empathy!
    • Azbella
      Azbella trish82895

      Posted

      Oh geese ❤️🙃 Had to surgery to repair break pkate n screws .... I was terrified. Was an orthopedic nurse .... I ended up with MRSA .. month in hospital 5 surgeries if it wasn't for morphine n pain patch .., 2 years of therapy ...back in 2002 ... Took its tole on me ,,,

      Prayers hugs good thoughts ...blessings ☮☦

    • trish82895
      trish82895 Azbella

      Posted

      Wishing you well in your long, long recovery.  Loved your opening line:  I THINK you meant "Oh Jeez"!  But "Oh Geese" is much funnier!! Prayers & get-well hugs.
  • Jmac2
    Jmac2 trish82895

    Posted

    Hello trish82895 & Azbella, I have not fallen from anything,but since I have started having shingles on my right thigh I have had them on my vaginal area. It is the most excruciating pain. I take pain pills for perennial neuropathy in my feet. They don't even give me relief when I have a break out. My hips and everything attached to them kill me. The pain is bad enough,but when the blisters come out getting dressed is not an option. I have tried everything. So if you come across something for even a minute relief please let me know. I may not be talking about the same thing but I sure feel the pain you have talked about. Jmac2
    • trish82895
      trish82895 Jmac2

      Posted

      Hello!

      So sorry to hear of your pain & affliction, Jmac2! As for the PHN in the vaginal area, the ONLY thing that relives the awful pain, albeit temporarily, is a prescription cream, Lidocaine with Prilocaine, which I apply after an ice-cold sitz bath. None of the oral meds have helped at all - though I know that some PHN patients get relief from Lyrica. All the other balms & salves, whether prescription or holistic, cannot be used in the vaginal area. Not sure if the Lidocaine cream will help when you have the initial blisters, but it does give a 15 minute break from the PHN agony. The only other thing I've found to assist with pain management is yoga! Sounds ridiculous, but it had been proven to help cancer patients who are undergoing chemo & feeling terrible! Good luck! Thank you for responding. Be well.

    • Jmac2
      Jmac2 trish82895

      Posted

      Thank-you for the tips. I will try anything as I stated. It's bad enough to have shingles, but why do you have to go there! LOL You have 5'-5" to play with why go there, Bad pun I know, but sometimes smiles make life look a little better. geeze.
    • trish82895
      trish82895 Jmac2

      Posted

      ... & in my case, 5' 8",  so you'd think there was enough space to target elsewhere! You're right - laughter and smilles are helpful for sure!
  • Merry19451
    Merry19451 trish82895

    Posted

    Dear Trish,

    I am truly sorry for your suffering. I do not have Herpes Zoster-Shingles in the pudendal nerve. I have recurrent Herpes Zoster-Shingles every three to five weeks for the last 20 years in my right ear. The first time I had Ramsay Hunt Syndrome-Zoster-Shingles, I wanted to literally cut out my right ear into my brain. I do understand your pain. Obviously, you have it in a delicate area. Have you gone to a pain specialist who performs nerve blocks to that area? The pudendal nerve can be blocked in childbirth. Usually, in the States, the specialists who perform these blocks is an anesthesiologist.

    Regarding the gabapentin, if the nerve block route does not provide relief, there are many anticonvulsant medications that may be

    "cleaner" that provide some relief. (Cleaner=less adverse reactions) I take Topamax daily, which I am certain has been great at attenuating the acute pain during each episode and helps prevent PHN. That being said, I still have to use an Opioid during each episode. I would try the nerve block route, as it can be highly successful.

    Please let me know how you make out.

    You seem very bright. Ask around. Nurses are usually great resources as they know who are the great physicians to go to, and the ones to avoid.

    I am a nurse practitioner in the States.

    Please let me know how I can help you and how you do. I am here to help you.

    Best Wishes.

    Merry Juliana

    • trish82895
      trish82895 Merry19451

      Posted

      Dear Merry Juliana,

      Thank you so much for your response and your helpful advice.  I can't imagine the pain you have to endure - and so frequently too! You must DREAD each attack. I hadn't heard of Ramsay Hunt Syndrome so I Googled it and can only say that I sympathize with you even more now that I've read a little about the horrid condition.  I am so SO sorry.

      The nerve block you mention sounds like a great idea - do you know how long the effect lasts? Have to admit that I'm terrified that the urinary tract might also end up being numbed - unfortunately my medical knowledge is sketchy at best, so my saying this might be absolute rubbish!

      I will definitely ask the dr. about Topomax. Also, I'm certainly  willing to take Gabapentin again - the research that supposedly linked high dosage Neurontin to early-onset dementia may very well have been merely scare-mongering!

      It is so strange that my PHN has suddenly become so bad again.  My original Shingles was diagnosed in March 2011, with the PHN developing a few weeks later.  The pain, though still intense, lessened a little over the years, but is currently back with a vile vengeance - and my energy level is at its lowest.  I was diagnosed with 'flu and bronchitis March 2nd. this year and was pretty ill for 22 days.  I was hospitalized as I was dehydrated and had trouble breathing.  At that time I was aware of a prickly, itchy rash on my trunk (back & front).  I mentioned it to the docs, but they didn't address it, so I just let it go.  Now that the PHN is so excruciating again I'm beginning to wonder if perhaps I actually had another bout with shingles.  But it seems odd that the PHN is definitely in the vaginal area & not on my trunk.  Is that even a possibility do you think?  Sorry, that's a little confusing, but what I mean is that is it possible for one to have a 2nd dose of Shingles, but have the PHN flare up in the original location rather than the 2nd. area?  I have to admit that I have no confidence in my Primary Care Physician's experience with Herpes Zoster & PHN. It's almost as if he just asks what meds I think I should try!  No-one appears to specialize in this wretched disease.  I suppose that's because it's not consisdered to be life-threatening.  However, I have a friend whose mother killed herself because she simply couldn't take the PHN pain eny more.  I know how she feels & I'm certain you do too.  But I value life and am not by nature a depressed or suicidal type.  Though some days ...

      Thank you for any input you might have!  I wish you renewed health - and a CURE!

      Trish

    • trish82895
      trish82895

      Posted

      Whoops - that's "any", not "eny" in the penultimate paragraph!! Sorry!
    • Merry19451
      Merry19451 trish82895

      Posted

      Trish,

      I am certain that you had another episode of Zoster-Shingles. Where was the first rash/pain? The second location is transvaginal, correct? Re pudendal blocks, if you live in the UK, your health service is familiar with them. I researched the UK health service. Depending on the exact location of the pain, right or left, and the area of the pain in the genital area, they should be able to localize the block to that specific area. The important factor is finding an excellent anesthesiologist / pain management physician able to perform pudendal blocks. Often, gynecologists and urologists are aware of physicians in university settings who perform these blocks. They usually do a temporary block first to see if that is where the problem truly is.

      The knowledge of blocks and pain management has evolved greatly and the micro technology would be beneficial in a case like yours. If you have chronic agonizing pain in the transvaginal area, please consider the block.

      They might be able to ablate or cut the pain nerves without cutting any spinal nerves involved with urinary, sexual, or gastrointestinal function. I was evaluated by an anesthesiologist for severe chronic pain and discovered this pain management world. I ended up diagnosing myself with neck problems, cervical stenosis, causing severe back pain. I had lumbar and cervical Laminectomies & Fusion and have no neck or back pain. Thank you for your kind post re Ramsay Hunt Syndrome. I have learned to deal with it. I take the medication I suggest and rest, a lot.

      Best Wishes and Happy Spring!

      Merry Juliana

    • trish82895
      trish82895

      Posted

      Hello again Merry Juliana,

      I can see that you've been kind enough to respond to my post of yesterday.  There's a note from Patient which indicates that your reply is "waiting to be moderated". I hope they take care of it soon and permit it to be posted!  Thank you so much!  In anticipation ...

      Trish

  • Merry19451
    Merry19451 trish82895

    Posted

    Trish,

    I just read everyone's comments including Azbella's Geese! Funny at 7 am! Azbella is a sweet lady!

    The Lidocaine cream is a great idea as I use Auralgon ear drops. It has Benzocaine, an anesthetic like Lidocaine, which helps numb the nerve endings. Very soothing!

    Keep communicating. The thing with Lyrica is long-term studies aren't in as it's a relatively new drug. Neurontin is a very old drug, and that is why they have data.

    With Neurontin, have they teased out whether Neurontin caused early onset dementia or was it due to patients having multiple seizures daily

    causing dementia. Neurontin is primarily a seizure drug. I guess what I am saying is that some sources sensationalize medical studies, to the detriment of the medication and ultimately people. I will read up on the studies later today myself.

    Lies, Damn Lies, and Statistics!

    LOL

    Merry Juliana

  • jocelyne44618
    jocelyne44618 trish82895

    Posted

    Hi Trish82895, Oh I can not even imagin what you are going through, I know my constant pain is in the bust area, but I take the usual tablets and the patch I do feel it is todo with the stress of even the simplist things, even making a cup of coffee,or hanging the washing,  I now take an "oral solution"  OxyNorm liquid... Oxycodone hydrochloride  "Immediate release"

    It works for me  you give it about 4-5 mins and it ease the pain,  I dont know if you in the UK or where but I find it helps me, get through the day.

    I really pray your pain becomes less.  Jocelyne  Cambridge UK

    • trish82895
      trish82895 jocelyne44618

      Posted

      Hello Jocelyne, I was in the middle of responding to you yesterday when my computer crashed!  I'll try again!  I totally agree with you about the overwhelming fatigue.  I take care of my little grandsons, so need to be full of energy; but really all I want to do is lie down & cry! I was taking Oxycodone for a while but was concerned about addiction.  Although I'm British (born and raised in Berkshire), I have lived in the US for years.  I haven't come across OxyNorm liquid here - but maybe it IS available.  I'm just worried that I'd be out of it and unable to properly function - especially with these little ones forwhom I'm responsible. When you take it, do you rest, or are you able to take on your usual daily chores?  Here's hoping your pain eases.  Thank you so much for responding!

      Trish

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