hello from pudendal neuralgia sufferer

[Moomoosmum]

Hi, I kinda diagnosed myself. I've pretty much lived at my local Dr surgery this last 18 months. Each time I've been told they don't know what my symptoms were, couldn't therefore prescribe any meds to relieve the pain/discomfort. I have had heart tests, bloods (numerous ones), an ultrasound and CT. sounds a lot of them, but it's been over the last 18 months. seemingly the NHS runs very slowly indeed. Then a friend of mine Googled my symptoms and came across pudendal neuralgia on the NHS website! GP referred me to pain clinic for nerve block, but the jolly NHS can't see me til August would you believe.

So I contacted the local private hospital and within a week, I have seen the pain consultant. It was such a relief to have my symptoms validated. I'm not going mad after all. He said about a nerve block, so waiting now for his secretary to book this in with me.

Anyone else got this or had this done?

[Baileydog]

Hi

You will find this forum full of people who have had pn blocks done. They are something that works for one and not for another. I personally have suffered less pain since I started having them. They don’t eliminate the pain but I would say they turn it down a little. They may cause a flare up for a week or so after, so don’t despair. You need to give them time to settle in to then see how they work for you. I hope they help your pain

Sandra

[Moomoosmum in reply to Baileydog]

hi Sandra, thanks for that. that's really useful. Did you get this on NHS? i've heard that the CCG might not fund it, the consultant will decide when you see them I was told

[JH19]

are you 100% sure you need a nerve block. Do you wake in pain? Is it constant? If it isn't and it gets worse as the day progresses then I would suggest alternatives.

[Moomoosmum in reply to JH19]

HI, yes its 24/7. sleeping is difficult and short. it's agony standing, sitting and laying down. Dr Google matched my symptoms - or most of them. I've been given the run around by GP surgery for the last 18 months. All of the Drs i've seen there and it must be nearly all of them have shrugged their shoulders, don't know what it is, I've had ECGs, blood tests a plenty, an ultrasound and a CT, all have come back normal.

[Konagirl60]

Yes, I’ve had nerve blocks.

Where do hurt the most. Can you sit pain free? Can you lie down pain free?

Are you leaking urine? Are you losing stool?

What does the pain feel like? Is it electrocuting? OR. Intense heat OR throbbing OR pins and needles?

Let me know...

[Moomoosmum in reply to Konagirl60]

Hi, thanks for your response, it's really helpful. I'm not pain free in any way shape or form, whatever i do, nothing eases it, bought the 'doughnut' cushion, doesn't work. I've taken myself off to have bowel cleansing, thinking it may be a blockage, but it isn't. It started gradually 18 months ago and started off with a strange side to side or front to back movements. since christmas in particular it's really ramped up. I can't walk properly as the momentum of the nerve movement means i walk like a drunk person. i'm trying a forward walk but the nerve moves me side to side. sitting down is pergatory as is standing or laying down. it's hard to describe, but maybe like someone has I will say that i saw a locum a while ago who said she'd heard of nerve pain up to 30 yrs after any surgery or complicated childbirth. She put me on Gabapentin, but that hasn't made any difference.

so yes, it's sometimes like pins and needles x 1000. I don't feel heat with it the movement is really debilitating.

i've seen a pain consultant privately (last week) (as the wait to see one on NHS is not til August, I cannot bear it already let alone by August) he said about a ganglion block? he wants me to have an MRI scan, but his secretary is really slow at organising that.. consultant said that the injection may not work. what happens then? if the CCG don't fund more or different injections then where do i go from there?

[Konagirl60]

I’ve been busy. So sorry. How are you?

Do you think you lifted something heavy and possibly stretched a nerve?

What kind of work do you do? Do you do any repetitive stress movements involving your hips, back and groin?

Have you had children? Have you had a tubal ligation with metal titanium Filshie clips? These clips can migrate had cause injury.

One of mine migrated to my rectum and caused my right inferior rectal nerve to stretch and become stuck to ligaments and fascia. I had it released years too late because no doctor would help me. All they did was offer drugs that did not help whatsoever.

Would a visit to physiotherapist be a next step? What about a cranial sacral therapist?

[thenunn]

hi amongst other things I am suffering with PN ,and cluneal nerve pain which I think are all caused by my lumbar and thoracic probs. I too have it 24/7 and this week its been a real pain lol. Only reflief I know is weightless in water ,I have a deep bath so can do this at home with in warm with Epsom salt or magnesium flakes ..bliss . yes short lived but maybe that's why its such bliss . I had nerve blocks for back and leg pain ,they did nothing for me so wont be having them again . Heat and ice packs obviously wrapped ,help but I haven't found anything that helps for long ..im on gabapentin ,naproxen (which I take as little as poss) and tranmodol or cocodomol and accepting it ,which some days are better than others. I do stay as active as I can ,go to the gym even just to do stretches (its more social),rest when I need to . Nerve pain in very hard to treat ,so its finding ways to live with it . Good luck