Pudential neve I damage: In October... - Pelvic Pain Suppo...

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Pudential neve I damage

Lolarufus123
Lolarufus123

In October last year I was wearing stiletto shoes and was unpacking groceries from my car. I tripped and fell backwards. After this I couldn't walk and lost control of my bladder. I found out I had broken my sacrum and damaged my pudential nerve. Now my sacrun is almost healed. However i get pain in my butt, lower left butt feels like someone has stuck darts in there. Upper thigh pain, groin pain, pins and needles in my left front thigh and soles of my feet. I also get a sensationlike having a heavy bowling in my vaginal. I've been told this is all pudential nerve pain. I'm wondering if anyone else has experienced these sensations. I would also like to know about any treatment and hear from anyone that has recovered from this. Regards Julia.

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36 Replies
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Sorry to hear this happened to you..:( PN is a tough condition to have unfortunately. How are you managing your pain? Are you on meds? You will find your pain may improve, but as for recovery, it can be a long road, people with this illness have different symptoms and treatments, we are all unique. I have had it for a year after surgery and it’s still here and hurts, but I am better than before, slowly..

Konagirl60
Konagirl60 in reply to jenmal

I am 7 years post-op and doing so much better because pre-operatively I had absolutely no pain control for the neuralgia. My pain is now mostly managed with a nerve pain modulator, a mast cell inhibitor, a sleeping pill and medical THC and CBD oil. During a flare, I use suppositories containing 10mg. Valium and 2% Lidocaine vaginally at bedtime or I cannot sleep a wink because I feel electrocuted.

I DID develop cognitive decline because of the intractable pain which made me sleep deprived for 3 years. Not one doctor or specialist I saw where I live believed me. They all thought I had a personality disorder.

Anyways, do not let any doctor intimidate you. Be tactful but persistent. Before they’ll consider surgery it is best to have some guided pudendal nerve blocks. ( 3-4 ) I have found that many pain specialists do not use enough steroid in the injection and as result, the blocks fail and no definitive diagnosis can be reached. A nerve block is a diagnostic method for determining which nerve(s) may be vulnerable.

Hot pepper patches are the only thing that redirected the nerve pain signals for me but I do not think you can put them on labia or vaginal tissue. Have you tried a curcumin supplement? Wobezym is an enzyme supplement that boosts our immune system and it contains bromelin which also helps pain. Magnesium is essential.

I wish you luck on your journey. My own has lasted ten years and I am disabled but the pain is somewhat controlled and as long as I do not lift anything too heavy or bend over my groin too often, or sit too long ........I will not get a flareup. Life is so much better now. I almost died.

I made it because I hired a registered nurse consultant. She procured my surgery. Not one of the specialists I saw came through for me. They all misrepresented me and were frauds. ( covering up another issue where metal from a previous surgery had migrated and was irritating my rectum and a part of my bowel ). Do not give up.

Can you say what surgery you had?

The rear section of my right pudendal nerve was stuck to ligaments and fascia. Every time I sat I felt electrocuted in my rectum. It hurt 24/7 and after four physiotherapy sessions it got worse! I couldn’t lie down either. That meant no sleep.😜

The decompression surgery released it. No medicines or other treatment helped me. The side effects I experienced from prescription medications were terrible; severe weight gain, loss of sense of smell and taste, irritation cognitively, brain fogged, sleeping 24/7 ( Tramadol for two weeks which I quit using ) etc. I didn’t sleep normally for three long years....I almost died from sleep deprivation. This woke me up every night to urinate pain free on a toilet seat BUT when I would lie down again, it felt like someone was sticking a red hot poker up my anus and rectum. The pain was so bad I could hardly breathe.

No doctors would help me. I had to hire a nurse consultant to get to America and get the surgery. I’d been gaslighted from day one. My neuropathy was likely caused by a migrated titanium metal Filshie clip that was left on my rectum for nine years! The doctors saw it on an MRI and knew it could mean a possible lawsuit.

I was told I had a nerve imbalance. The pain specialist I saw misrepresented me, my diagnosis, my treatments and what she was doing in every consult note....doctors committed fraud...not me.

Oh my goodness. How are you? I understand your retractable pain, losing your mind and memory from the meds, I did lose it all. Still asking how could this be?

I’m exhausted.

I truly understand. I am not sure if you read this posting I wrote. It may be a repeat for you, if so just ignore it.

“I have suffered with this all my life and then 10 years years ago developed “Complex Regional Pain Syndrome,” which is calculated at 140 times the pain of labor. Injections, physical therapy, opiods, OTC’s, suboxone, morephine, not even methadone helped my pain, although high doses of Gabapentin took the edge off the stabbing searing burning type pain. I was preparing to take my life, a last ditch effort was trying LDN I am not sure you have read about “Low Dose Naltrexone.”(LDN) (3.5 mg) It blocks the sensory nerves at the brain source. I have found it nothing short of a miracle. The pain is still there but how I perceive it makes it bearable. The lowest dose available at the pharmacy is 50 mg. so I have to have it compounded at a sizeable cost. I find it such a miracle that I actually pay for the compounded capsules. Pharmaceutical companies are not interested in it’s manufacture as there is no money in it. I thought I just throw this out there because I made a commitment at the start, when there was no information out there on this subject, that if I ever found anything that helped I would put it out there. I am so sorry for your pain.

This medication blocks opioids so it cannot be used concurrently. In fact, it is what the pharmacy gives to have on hand to reverse a drug overdose. If you think of phantom leg syndrome, where the leg that has been amputated yet still hurts, as if it is still attached, the brain did not receive the information that the leg was severed and is still sending out pain messages via the nerves. So, this medication somehow blocks the pain message from my brain, to my damaged nerves. The pain is still there but I can live now. I was 8 years tipped backwards in a chair, to take pressure off my pelvic nerves, 24/7. I have a bit of life now. The pudundal neuralgia, although called by a different name then, was first documented at age 8, caused by childhood trauma. I have never known a different life on that one, but the CRPS came after surgery where they ripped a fibroid suctioned to the pelvic floor out, calling it fascinating, and thus severing a major nerve bundle, and doing further damage to the pudundal nerve.

That is the story, that is the drug, and that is my experience with it. I am so so so very sorry for the all the suffering for all the women who share this condition, I wish you comfort.”

It’s criminal. I need a good lawyer.

Lolarufus123
Lolarufus123 in reply to jenmal

Thanks for the reply. I am on Lyrica and a 20 mcg Bupranorphine patch. Nothing really kills the pain. It just takes the edge off. I am hoping that treatment at the Women's Health and Recourse Centre might help. They have a particular focus on Pudental Nerve damage.

Where is that centre? Good luck.

It's in Sydney Australia. I am hoping for an appointment in November.

I pray you receive competent care. So many doctors act as if they know nothing about this. What nonsense. Do not give up. Good luck.

Thank you so much. I am so glad that you have your pain under control after so many years.

There are pudenal nerve blocks always go to a well certified nerve specialist/

Urogyno/gyno

There are anti depressants for pain however it comes with side effects not all expierence the same side effects. For example my urologist told me they prescribe elavil for those who have urinary incontinence .

Last resort is surgery.

I also suggest western accupuncture

Konagirl60
Konagirl60 in reply to Delanna

Delanna, I did $800.00 worth acupuncture and it didn’t help at all. That could be because the rectal branch of my nerve was being compressed.

How does it help you? Thanks.

Delanna
Delanna in reply to Konagirl60

Well it eliminated some symptoms

I have a complicated sort of pelvic issue . The herbs she gave me did not make me sleep but it made me have a heavy period which is a good thing because toxic needs to be out then I stopped the herb because I needed sleep and it tasted like crap lol But I kind of understand sometimes it does not ease the pain but rather than go for relaxation if it makes any sense.

I understand your pain. If there is one thing I wish is to eliminate pelvic pain .

I heard one in nantes dr robert if not mistaken in france deals with these issues. If you are able to go then it would be good to sort out

Goodluck dear

Konagirl60
Konagirl60 in reply to Delanna

I have had my release surgery. I am on the road to recovery.

I have read that he pioneered the surgery. I emailed him at the start of my journey and he DID NOtT respond. Not impressed at all.

Delanna
Delanna in reply to Konagirl60

Usually some dr do not respond to emails or calls which I find very unethical I understand . Maybe you could call the office they might do a free phone consultation I am not sure.

Try another dr nearby maybe dr herman he is in Florida check him on you tube he might help with chronic pain etc..

Hope your recovery heals well

Konagirl60
Konagirl60 in reply to Delanna

I am done with invasive procedures. I am healing and resting now.

pizon
pizon in reply to Delanna

I saw a Dr. Richard Marvel in Annapolis MD it is my understanding he is one of only a handful of Dr.'s that do surgery and or speclizes in the treatment of P/N..after you see him I can tell you you can speak with him with any ?'s via e-mail..he knew what was wrong with me before he examed me

232bowers
232bowers in reply to Konagirl60

Where do yo have this done?

Konagirl60
Konagirl60 in reply to 232bowers

I was tested by a well experienced neurologist in Toronto who referred me to Edina, Minnesota. Both doctors are no longer working. Why do you ask?

Lolarufus123
Lolarufus123 in reply to Delanna

Hi Delanna and thanks for your reply. I think I will be having nerve blocks with a specialist in October or November. I've tried antidepressants and they don't do anything for me.

Delanna
Delanna in reply to Lolarufus123

Goodluck dear

Lolarufus123
Lolarufus123 in reply to Delanna

Thanks so much

How did they diagnose pudendal nerve damage?

Konagirl60
Konagirl60 in reply to Jev1972

3-4 fluoroscopy guided pudendal nerve blocks into the area they think is in trouble using 80 mg methylprednisone. If four of these do not work then surgery is the best step unless one wants to be sedated 24/7. No thanks.

Lolarufus123
Lolarufus123 in reply to Jev1972

In my case by my symptoms, scans and MRI.

What test helped the doctors the most? Thank you.

See Dellon institutes. This guy is inspirational.

I had pudendal nerve entrapment after a fall...I had pudendal nerve blocks (guided) and after the third one the pain went away

Right on......a happy ending. Thats great!

That's great to hear.

Can I ask which nerve block you had the third time.....I have had 5 with very little relief or for not very long. Thank you for your time. It’s so heart warming to hear there is hope for some x

Which nerve is in trouble? What are your symptoms? Sorry you are suffering.

Wow about two years ago i fell on some spilt beer on decking and went straight on my but lower back at first i laughed ( was a-little tipsy) then realised i hurt myself when i couldnt move next day.

It then just got better and i had backache now again but nothing major then one day about 5 months after accident the pain just went mental i leant over and something just went in lower back/ groin area. The pain in groin was extortionate and i went to a&e as i thought i was ill ( apendix or something) they gave me antibiotics.

It got worse and worse until i was bed or sofa bound. Pain in back,groin, undercarriage, hip, sciatica, pin and needle in foot.

I eventually found out my l5-s1 disc was compressing. I now go to osteo every two weeks and she has literally stopped it, i know it will never go forever and i have to b careful but it so much better i have days of no pain.

So go see a good osto or chiro. Not physio they not as good. Also some sacrum or sciatic exercise i find really help to

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