I decided to post on here and I haven’t in a while. I was starting to battle this ruthless disease Pudendal neuralgia so I thought I was. I went to see my specialist the other day and he told me I looked better. In fact everyone has been saying it. So, yes my pain did drop from a 10+ to 7. But that’s on 30 pills a day and you can’t possibly imagine what I do on a daily basis to get it to that point. It’s hard work. So, now my pain is 10+. You ask me why. When I went to my specialist the specialist decided to insert 2 fingers while examining me and I’ve been flared up since. This doctor didn’t ask if they could do this just did it and now I’m flared up. Worse than I’ve been in a long time and nothing I’m doing is helping me. I’m going for a Pudendal block and ganglion impar block today. I can only hope it last longer than 2 days or at least brings the flare up down. It’s funny I’m wondering how many others do this. When I’m around certain family members I make it seem that I’m better than I really am because I see how they look at me. I see how the world looks at me when I have to be out. I walk with a cane and I waddle. People stare at me and it’s beginning to hurt my feelings. My fiancé likes to say to me they are staring at you because you are beautiful and wondering what you are doing with a man like me. On a different note he is so handsome and they are probably saying look at that man with that poor girl. Why doesn’t he leave her. Sorry guys I’m just very depressed. I can’t lose an ounce of weight from the gabapentin that I’m on. My legs hurt and the Pudendal nerve areas always hurt. I’m 44 years old and the pain on my face has made the lines grow deeper. I use to get how young I look not anymore. I’m just so tired. Physically, emotionally and mentally tired yet I can’t sleep a full night through unless I knock myself out with drugs and that’s not really sleeping. I just never thought at this age I would be in this health and fully disabled. I’m sorry I know there are others out there who have it worse but this pain is pretty horrendous. So I want you all to know that every Sunday. Whether I know you or not I say the Rosary for all of us on this site that are suffering even if I don’t know your name. So, I’m asking all of you to please say a pray that my block today last more than 2 days or at least stops this flare that I am in. Thank you and God Bless all of you. Deb👍🙏😔
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Sorry Debra,I hope injections went well today,I do know how you feel,sometimes (most of the time)I feel I can't take this any more.I keep saying"I'm in pain" to everyone,can't help it,can't put on a front,I'm losing those around me.ive just been to Paris and had coccyx injections,lots of pain at first,think they are helping some now,but with the burning rectal pain hard to tell fully.I have a stick too now that my feet are so numb,burning,I can hardly walk.I used to walk lots to not sit,now what do I do.Actually I swim some,but can't feel feet in water.Specialist I saw last week said my feet related to sciatica and PNE.I am going to Aix next week to discuss surgery again,but I need to get my mesh out first I think.Im exhausting all my hope unfortunately,all my hospital trips are so painful to do,I am seeing someone in London tomorrow and the journeys sitting are so tough.I just want to be normal again.I don't sleep well,wake,get ice as pain hits,back to bed,doze,don't want to get up each day..it's so tough...
I completely understand. I feel the same way. Each day gets harder and harder to get out of bed. I force myself because I feel if I don’t I’ll completely lose what little I have left of me. I keep a journal of everything. Maybe someday someone will read it and understand the actual horrible horror it is to have this disease. I think writing it down helps. Sometimes. I think it does sometimes. Know this you are not alone. Someone in New York feels your pain and is awake at night suffering with you. God bless you. Deb. By the way I’m in the waiting room waiting to go in for the block. Thank you. Deb.
Deb, I'm praying for u. I feel ur desperation and wish I was there to just give ur hand a squeeze of encouragement. Someone in Washington state feels ur pain, humiliation and suffering. All my love, misti
Thank you so much misti. I have been meaning to call you. I’m sorry I haven’t. I’ve been in a very bad way. I will I promise ok. Lots of hugs and prayers your way ok. Deb.
Misti, block done. They gave me ketamine in my IV. Wow it made me feel really weird and only gave me 10mg of it. Says it’s been helping with pain. So I’m painfree now let’s see how long it is gonna last. Ok. Thank you Deb
Yes but let’s see how long it last. I’m still uncomfortable. It’s a pressure feeling but no burning anymore and I’ll take it you know. Thank you. Lots of love misti.
Thank you. Had the block. It worked. I just don’t know how long it will last. It doesn’t matter I’m just hoping it stops the flare up. Any of you ever heard of ketamine. My doctor today with the block put it into my IV sedation. Told me they are using it for chronic pelvic pain. I’m just curious. All I know is it’s pretty strong stuff and they cut my dose down to 10 mg from 50 mg. It still had some pretty strange effects when I woke up. I’m curious has anyone ever had ketamine injections? Again pelvicpain123. Thank you for your reply. You hang in there too. I won’t give up. I just get those times like this and it is so freaking frustrating. I’m sure we all feel like this. Hugs and prayers. I’ll be praying for all of us. Deb🙏🤝😿
I know exactly how u feel, ive been goin through this for about 13 months now and from being misdiagnosed that i had endometriosis so had a lap and hysterscopy, then a
Colonoscopy. Then told i just has ibs even though all way along i been saying it muscular i eventually paid myself to see a womens health physio!
Who on telling her my problems and what id been through she did thorough test ie up front and back passage😳.
Then she pressed inside on left side and i nearly hit roof.
So all these ops ive had i never needed as it turns out i have a hip flexor tear that is inflamming my sciatic nerve ,my pn and my psoas muscle which can b misdiagnosed for ibs or stomach related problems.
So i had hour long session with her massage inside and out and i feel so much better!
Im goin again in weeks time, she expensive as she is one of very few womens health physios.
I thought i would just put this out there so that mayb people will think oh mayb its this and not that or help someone or even help them think about trying a Physio.
Of all the money i have spent ( about 4k) since this happened to me this was best £90 i spent
Hi,How strange you've put that post on,I've been watching videos on this technique,and I've been enquiring about giving it a go. But from what I've read you have to be very careful who does it,because it can make things worse.
But thanks for that,it does send out a bit more encouragement,and you can't put a price on feeling free from pain.
Yeh oh god i cannot express that enough that u must go to a reputable womens health physio.
I did my homework and knew that this lady had been trained by one of the best maria Elliott( if u can get in with her even better) but she was so good.
I was living on so many pills and cbd oil and i went to her and she released my psoas and pn and i have had to take very few pain meds since. I actually see light at end of tunnel.
Not saying it for everyone but i dont wana b on pain meds forever or b in pain forever i was a very active 44 year old( no children) went running with my dogs,ski ing , snow boarding, now become a recluse. Go to work come home.
It so nice to have sleep and walk with 50% less pain then i did have.
As u said though it may not work for everyone
Hi Debra,I can only empathise with you,I know exactly where your coming from. Anyone asked me or my hubby how I am we just say,still the same,but I know they don't understand ,so we don't bother.
Ketamine is an anaesthetic pretty strong stuff. Going back to your ganglion nerve block,I had one about 9months ago,didn't do nothing for me,so he's going to give me another. But like you I'm in so much pain I've asked my hubby to kill me,it's never ending. I don't get flare ups it's a severe chronic pain on a daily basis. But when I get to sleep,all being with temazapam the pain never wakes me. I've suffered this for over 13yrs. I sometimes wonder if they are treating me for the right problem. I've been all over the country seeing specialist and having every test available.
Please keep us up to date on your procedure. And I do hope Sincerely it works for you. All my best Norma.x
I’ve been like you exactly for 17 years now. My pain is constant and flare ups are above and beyond. I never have a moment when the pain is not 24 hours a day 7 days a week. Except with the nerve blocks. So I go for 2 nerve blocks a month even if I only get a day of relief just for my sanity to know that I’m still human and that it can go away. Right now. I have no pain. I don’t know how long it will last. Only one time I got lucky and it lasted 7 days. That was the best 7 days of my life. I don’t know what was done differently and the doctor said it was done the same way. So, life is difficult and at 44 it has changed completely for me. I’m currently disabled. I also have interstitial cystitis and have to deal with that as well. I use to have a beautiful career that I miss every day and all of this takes some getting use to but I can’t let it beat me. Nor do I feel any of us should let it. I know in my heart and I have the faith that there will be better treatment out there someday rather than the 30 pills a day that I take. I know most of you do the same. Plus all the other procedures many of us have tried and believe me I’ve done it all. Except the decompression surgery and cryoablation. So that’s what I mean I guess when I say when is enough Enough. That’s what I mean when I say I get so frustrated. But we all have to stay strong. I’m trying so hard to. Thank you Norma. It’s so nice to know I’m not alone. I’m so thankful for this site. God bless you Norma and everyone on this site. Deb❤️🤝🙏
Well would you believe I've just had a phone call to book my appointment for a second nerve block on 28th of this month. But with you saying they don't last long ,I'm now beginning to think is it worth it. Now don't get me wrong,I can only imagine a day without pain. I wake in a morning,and just lie there with no pain,and think to myself imagine this is how I used to be,then when my senses start to kick in,I relive another day the same again.
It just seems a terrible way to live,even my hubby gets upset for me,because it obviously rebounds on his life.
On Monday night I went to bed,obviously in pain,and I couldn't get to sleep,so I got up went to the loo,took another half of my Temazapam,when suddenly the pain went from my pelvis,all down the inside of my leg,right into my big toe,I've never experienced nothing like it,it frightened me to death. That's the sort of thing that makes me think it's nerves.
Well I'll leave you to enjoy the rest of your pain free day. You enjoy. And thank you for your time.💐❤️🤞🤞🙏🏼🙏🏼
Debra, living with this neuralgia is torture. I totally understand where you are coming from.
First of all, have you been formally diagnosed with pudendal neuralgia OR pudendal nerve entrapment? Did it start after having a baby? How did it start?
Are you a very athletic woman? Have you done repeated stooping and bending over your groin at home, at work, bending over to pick up a dog’s stool, or due to athletics like cheerleading, line dancing or long term ballet?
The pudendal nerve root is in the buttocks. The rear branches of this nerve can be stretched in an athletic person. ( repetitive stress ) The sacrotuberous and sacrosphinous ligaments in our lower back and rear pelvis can be overused as well and ‘ juxtapose’. ( move )
If the two scenarios above happen, the nerve can start to attach itself to surrounding fascia and become entrapped by the sacrotuberus ligament ( 70% or cases of entrapment) OR be pinched in the Alcock’s canal.
Can you sit ? Can you sleep? Have you had any physiotherapy?
A Compound suppository made with 2%Licocaine and 10mg. Valium is what saved my life. I insert two of these every night and I can sleep. Unfortunately, sex is out of the question because this medication sedates the pelvic floor. ( and stops painful throbbing etc. )
I pray you figure out what is causing your pudendal neuralgia; 1. Childbirth
2. Entrapment 3. Right pelvic floor.
I had my right pudendal nerve released in 2011. The surgery worked and I am sitting on a reflexology pad called ‘Spoonk’ for up to an hour at a time. Sitting always causes pain but we cannot stand up all day and evening.
The US surgeon who saved my life ( I did not sleep properly for three years because of no pain control ) would not do surgery until I had three successive, one month apart pudendal nerve blocks with imaging AND anaesthetic and steroid. (80 mg methylprednisone ) If these blocks did not calm the nerve then surgery was the only way to solve the problem. I hope this helps.
I fell 17 years ago on my coccyx bone. I had an MRN Confirming damage to my perineal branch of the Pudendal nerve with scar tissue. I have had diagnostic nerve blocks and over 30 of them for treatment. I have had a partial hysterectomy, pulsed radial frequency twice to the Pudendal nerve, a trail of the internal electrical stimulater, a vulva vestibulectomy 5 years ago before I was definitively diagnosed with Pudendal neuralgia which destroyed me literally and made me completely disabled. I have L4-L5 herniated disk and L5-S1 bulge which is infinginging on nerve roots, I have tried Botox, surgery removal of scar tissue and amniotic injections with Dr. Jarnagin in Tennessee. I go twice a month for nerve blocks to help me with relief for 2 days. I’ve basically have tried everything. I may even be forgetting some things. Also have had several ganglion impar blocks tried physical therapy and still going. I also have interstitial cystitis which was diagnosed with a cystoscope with hydrodilation in December. I have been correctly diagnosed. I’ve been living like this for years now only to have had it get worse after a monster of a surgeon did a vulva vestibulectomy on me 5 years ago after he misdiagnosed me. My life has not been the same since then. Up until then I had a flourishing career as a physical therapist for a very well know sports facility. I was able to deal with the pain up until then. I didn’t need the 30 pills I take daily or the sits baths, ice packs and stretches I do daily just to get out of bed. I worked and had somewhat of a life if you could call it that. It may not have been perfect but at least I could function. People make mistakes and pay for them. This is my advice after ppl read this. Just be careful who you trust. I paid out of pocket for that surgery. It made me worse as I was told I would be cured. The moral of this story. Be careful of the scammers out there. My doctors now that I have I trust. I was told by my pain management doctor that it’s a red flag if the doctors don’t take insurance now I play it safe. So, that is the short version of my story. It kinda stinks but I also learned that you can’t hold onto anger and I had to forgive that surgeon before I could ever attempt to heal. That’s what I did. I let go of the anger and let it go. But I’ll never be able to forget the torture I went through. Thank you Deb. 😩😔😿
Debra, OMG you have and are suffering. My sense is that you needed decompression surgery as after that fall slowly but surely the perineal branch was adhering to something else.
Are you taking a good nerve pain modulator like Nortriptyline or amytriptyline? Hydroxizine hydrochloride helps nerves as well. I could not tolerate the brain fog from Gabapentin and Lyrica. I gained a ton of weight as well. I stopped them early on.
The only thing else I can think of that may help are capsicum pain patches. If applied on your buttock close to the area ( but not on epithelial tissue ) the capsicum will redirect the pain signals.
Have you ever been offered 12.5% Ketamine:12.5% saline nasal spray? It might help you however it will sedate you a little. I used it for three years and since having a second surgery last June, I have been able to wean myself off of it this year. I feel for you tremendously. I agree, you must let go of anger. Stay calm.
Just had ketamine yesterday for the first time and I take gabapentin and have gained so much weight from it. 😔it just really stinks. They did the ketamine with the block yesterday and I’m still having less pain but I can feel it slowly coming back. 😢
Please don’t say that. Please you must not give up. Please ok. Judi. I’ll say a rosary for you. Please. I can’t this F//-ing disease sucks. I’m so sorry. Please hang in there. Ok. 😿🤗🙏👍🤝
I know....I wake up late every morning around 10-11a.m. I fall asleep when my body lets me and usually that is around midnight. You need your sleep! HVe you tried Zopiclone?
Thank you. Konagirl. I’m gonna look into the pills zopiclone. Yes my body does the same thing I will dose off in the afternoon for 2-3,hours. That’s what it allows right now. So, thank you. Deb.
If you are prescribed Zopiclone, start with half a pill first. If that does not work then use a whole pill. My doctor told me to never take more than one so I never have. Good luck. I am glad I could be of assistance.
I'm sorry you are going through so much pain. I hope your doctor can relieve your pain permanently. I will be praying for you. I know how it is to be in pain and hurt all the time. I have been doing good for 2 years or more now. Thanks to my Lord and Savior Jesus Christ and my Urogynocologist. I'll be praying for your pain to stop.
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