I have had Pudendal Neuralgia/entrapment for about 13 years now. It began occasionally and has progressively gotten worse. I hope to find someone who has tried things that help with this constant and debilitating pain. I have tried all kinds of blocks and Ganglion Empar, injections...etc. I have tried opioid medications, All three trials of the spinal cord simulators. I tried the stem cell allograft by Dr. Jarnagan in Tn. I take Gabepentin 600mg 4 times per and since the pain is so bad, I have resorted to taking 1/2 of a .5 mg of Klonopin usually two or three times a day and suffer all day long. I have recently lost my daughter to cancer and almost lost my husband the following week. I know this has caused a flare up. I take cymbalta 60mg day and Seroquil 100mg daily. I can't really tell if the added mood stablizer's have helped since there were added later though more than 3 months. I have taken the Gabepentin for years now and i am thinking a change to Lyrica could help. I will talk to my pain doctor at my next visit. Does anyone have anything to add? Has anyone had success in any degree after change to Lyrica from Gabepentin?
Gabepentin or Lyrica for PNE - Pelvic Pain Suppo...
Gabepentin or Lyrica for PNE
Hi,I can't add much to your post,but I have suffered for around the same amount of time. I've been taking Lycra for about 10yrs,and I can't honestly say it's been of any help. I would seriously discuss this with your specialist.
Maybe you are with Lyrica as I am with Gabepentin. Maybe a change might help. Hope the doc can help!
What type of entrapment are you suffering from? This can affect treatment options
I don't understand what you mean by what type of entrapment do I suffer from? That is the first time I have heard this. I am sorry I don't know.
I know how you feel. All I got told by the surgeon that did the operation which I believe caused my problem was that it was NOTHING TO DO WITH THE OPERATION even though I had not had the problem previous to surgery. I really don't care WHAT caused it, I just want the pain gone. I am now seeing a different Gynaecologist who has given me steroid cream and suggested massaging the scar. This seems to be helping and my situation doesn't feel so bad. I have been on Gabapentin since 4months after surgery. This helps also but I have put weight on. I took Lyrica for a back injury and it did nothing except make me nauseous. Please try another specialist if you can.
Hi where did you have your surgery as my surgeon said he didnot know what my pain was I was operated on 15 months ago and still have this pain but now my physio thinks it was due to the position I was in on the op table My GP at last is sending me for an MRI to see if the nerve has been compressed and I will be taking legal advice
Do You live in U.K?
charlee4. My dr had suggested that I switch from gabapentin to lyrics. Then she told me I could take both at the same time. I have dizziness from the GABA and when I tried lyrics years ago, my hands and feet tingled all the time to the point I couldn’t pick up some things. I decided not to combine the two and actually reduced the gabapetin from 900mg 3 times a day to 600 mg 3 times daily. The only thing I notice in the decrease is that I can’t sleep. Hopefully that will go away.
My theory is that it is your body and only you will know how you feel if you switch. I usually true a new med to appease the dr but as soon as I have any difficult side effects, I stop the meds.
I hope trying something different will give you some pain relief. Much needed pain relief, I have no doubt. N
Thanks. God knows how I need the relief. I hurt all the time except when I am sleeping. I took Ambien for sleep after months of sleeping so little I lost many pounds. I finally was told by two physicians to try medical marijuana. I finally tried it after the second doctor suggested it. The daytime doses made me feel like I was not in control and I didn't like that, so now I take CBD oil and then the marijuana (both are sublingual drops) at night helps me to sleep without the Ambien. I had rather take that than Ambien. I also take one half a .5 mg of Klonopin a couple of times a day and that relaxes the muscles enough I get some relief. I can take up to two whole ones a day, but I try to hold back on it a little. It is additive too, so I try not to take much. Maybe the doctor next week will prescribe some muscle relaxers. Have you used those before?
Hi charlee4. Yes, I have tried 1 muscle relaxant. In Canada it is called Flexeral. It did relax my muscles to the point I had trouble with balance but it did not help with the pain. I may be different because my pain is nerve pain related to a back problem that is also causing pelvic pain.
Canada is just legalizing marijuana. Drs here are not totally on board yet. I did get some CBD oil through my son but it wasn’t always available and extremely expensive. I did use it every day for a month to no avail.
I too have lost a lot of weight. Something I find drs don’t take it seriously. I think because more people complain about being overweight, that when you say, I need to gain weight it catches them off guard.
I’m always so surprised that all the meds the drs prescribe are or can be additive. I understand the concept that if you are truly in pain you are not suppose to become addicted. Having said that, if you put any medication in your body long enough you will need to keep taking it and slowly taper down. I was agaspt when I read the addictive properties of gabapentin. I thought it was for nerve pain. The taper schedule is extremely slow, telling me that withdrawal can be uncomfortable to say the least.
I had to resort to taking a sleeping pill at it’s highest dose just to get 6 hours of sleep at night. I’m not happy about it, but how do you cope during the day with no sleep.
I’ve tried every med singular or in combinations. I never felt so zoned out and like you said out of control of myself. I don’t like that feeling either.
I am self employed so have had to pay for chiro, physio, acupuncture, massage and hypnotherapy myself. Too much money spent with no real positive answers and no success.
My biggest beef is that the drs are telling me that until I can’t walk, hold bowel and bladder functions and my back basically breaks, it is not an emergency. What ever happened to preventive medicine??? N
Lyrica and Gabapentin are both anti epileptics so wouldnt take two together as that would be like double dose I am trying to reduce my dose of Gabapentin and told to do it slowly or the withdrawal symptoms are bad. I got tingling around my eyes and in hands and legs when I stopped the gabapentin and started Lyrica and now know it was because I stopped the gaba abruptly
Smollyholly. Could you please tell me about Prudendal Hope. Is it a medical information site or comments? Thank you. N
Told by pain psychologist to check out the website I think its an Australian site but has info on youtube and insert Pudendal Hope into google Let me know if its any help thanks
Paracetamol is an opiate. I wish 10 mg of Amytriptaline would make me sleep, but it did not. I am taking only Gabepentin and Cymbalta now for the nerve pain. Nothing I have tried even low dose opioids helped. This PNE has been with me 13 years. I have been the gambit. You can look at my posts earlier. I don't know of anything short of surgery to try. I am not ready to take a chance on surgery with the stats still not showing a great degree of benefit for most. I am hoping in time more doctors will have more knowledge of this and be willing to work with something that will help us. I pray for us all.
Paracetamol is not an opiate in the UK It is an over the counter medication and an analgesic for mild pain
charlee4. I am waiting for a stat consult with a back surgeon. I am scared to death to have back surgery. At this point I have tried everything. It may be my only option. My dr told me that 1/3 of patients get better, 1/3 stay the same and 1/3 get worse. Not the best of odds. What to do? I don’t know. N
I had the decompression surgery. The rectal branch of my right pudendal nerve was clasped between two ligaments and had to be unpinched from them and surrounding fascia. No one can stand all day and evening!
It really helped me. I was left standing for 2.5 years and then lying with a heating pad in my crotch, burning tissue, for several months until I finally hired a registered nurse consultant. None of the doctors would help me although they said they would. Hiring the nurse helped me get my surgery. The doctors knew about migrated Filshie clips and cvered it up.
With THC/CBD oil, I was able to wean off of a fentanyl patch, Tylenol#3 and Ketamine nasal spray all of which did nothing for my pain. I needed surgery. The surgeries to remove migrated Filshie clips were finally done in the last 13 months. Slowly, I hope my CNS and PNS relax and calm down.
My surgeon has retired. Where would you go to see about surgery? Good luck.
Doctor should have told you how to tier down.
I found diazepam to be the only thing that helps. Lyrica and GABA made me an emotional wreck. Unfortunately diazepam is very addicting and brutal to come off. I use it when pain is unbearable. Have you had PN surgery?
No, I have not had surgery and I don't intend to do it at this minute. It needs so much perfecting as the results are not always what we want them to be. I keep hoping something will eventually come down the pike to help us as the medical profession learns and does more about it.
Hi Charlee4. My heart is with you. I first started suffering nerve entrapment pain in December 2013. I went through so many procedures. I had nerve blocks that worked a day or two but finally in March of this year 2018 I had laparoscopic surgery at Toronto’s Mt. Sinai and they found several veins were constantly pressing on
Pudendal nerve. The pain that I had endured all these years was horrendous. My pain felt like someone had butted out their cigarette on my anus (truthfully). I have ms but I am not able to take gabapentin or lyrica as they made me feeling sick. Surgery was successful and I have occasional pain but does not last long. It is because my pudendal nerve had been touched through the surgery but I am very grateful I do feel better. Don’t hesitate to talk with me if u choose as I am very empathetic and I understand how u feel
Hello Debbie. Been suffering for 17 years. Damage to my left Pudendal nerve with scar tissue wrapped around the perineal Branch of the nerve. Very hopeful that your surgery was a success. I too have had a total of 30+ Pudendal nerve blocks lasting only 2 days at most and I still go for them twice a month. Sometimes feel it’s not worth it. Been through everything except surgery and cryoablation. I have interstitial cystitis with Pudendal neuralgia. Pleasure to hear your a success story. Thank you. You just gave me a light at the end of the tunnel. Would you mind if I asked who did your surgery. Thank you and God bless. Deb
Thank you. I understand your pain for sure. I wish I could find someone in my area to know what to do. I am suffering daily,and hourly. I am helped a little with Klonopin to relax the muscles, but I take such a low dose. I have a friend who has recently come off Benzos and had a horrific time. It took weeks to wean herself from them. I hurt from the low back to the low belly. My hips and thighs also hurt.The rectal area is the worse. Again, I take gabepentin 600 mg 4 times per day, Serequil 100 mg and Cymbalta 60 mg once a day. I am beginning to go back to pelvic floor therapy and begin aqua therapy. I have not started many exercise stretches but that will also begin today. I have tried three different stimulator trials, the last of which was the DRG to no avail. I also tried the Botox along with the stem cell allograft Dr. Jarnagan in Tn. is doing. I paid most of that out of pocket and still had so relief. I have had many injections, and other tests which leaves me with little else to try. I could try the other two stimulators out there, but at this point I am not willing to go through that again right now. i was told that a CT guided Pudendal injection might help. I am thinking about trying that next.
Hi I tried the DRG trial last summer. It was Axium DRG with leads at L1and S2. I had the Interstim implanted at S3 in December. I have had a reduction in pain, but not 50% which is the criteria for success. I will consider another implant if these devices become more refined. Did you have the Axium or Proclaim DRG? Where were your leads.placed? I am taking 1800 mg of gabapentin. I use a CBD tincture twice a day. In the evening I use a 1-1 CBD-THC tincture to help with evening pain. I tried other medications. They rendered me useless. Sitting is my biggest pain trigger. I sure sympathize with all of you suffering from this painful syndrome! Thanks for the support.
I believe it was the Axium DRG. I do have the notes, but I am rushing this morning and don't have but a few minutes. I know the leads (two) were placed the the L-1 and L-2 also though I am not sure if the S-3 was involved. If you have additional information or questions, please write back and I'll go from there. How much of the CBD -THC do you take at night? I take 1mm. Do you take any benzos like valium or Klonopin? Do you hurt morning till night? Have you had anything in your recent life that causes the pain to be worse. I lost my oldest daughter in April and I have been through other family illnesses. I am currently in a state of stress. I am working through it and I don't have panic attacks anymore. Do you hurt when you lie down? When I try to lie down to relax I hurt so bad I have to get up sometimes. I have to try to do the relaxation exercises standing. Thanks for your input.
I use lyrica, 5 times a day. Tramacet also. Valium to keep muscles calm. I also use a candida supplement daily as well as a natural supplement called nerve renew. My pain has significantly decreased. Hope this helps. I also do a lot of walking.
How much did the Nerve Renew help?
What strength Valium do you take and how often? Did you ever try Gabepentin? My doctor decided not to put me on Lyrica (this week), as he said I would have to tier completely off Gabepentin first then try Lyrica which likely wouldn't work differently for me. I think he was afraid for me to come off Gabepentin with my pain being so high. Why do you take Candida? Isn't that for a yeast infection? Where did you find the Nerve Renew and how much does one need to take? I'm at the point I will try anything. Still considering the CT guided steroid injection. I had one which worked pretty well, but that was guided by a fluoroscope. The doc who did that is a diagnostic radiologists at an orthopedic center and doesn't have access to the CT machine, so he wouldn't repeat the injection without one. I am able through the Shands Clinic in Gainesville,FL to have one. What is your opinions on this?
Hi Charlee,
First of all I am so very sorry to hear about your loss and all the stress you are under. When all of this pain began for me I was seen by a group of pain management specialists. I attended an 8 week class which gave me some tools. That lead me to a meditation class. That has helped me to cope, but I have to remind myself to do the breathing and to take time to do the meditation exercises. I only take gabapentin and cannabis. I use the services of an RN who specializes in recommendations for people in chronic pain. I use mostly CBD tincture, but use a combination of CBD/THC when the pain/spasms flare in the evening. I use between about 5-15 mg a day. My Dr. will not prescribe Valium. It takes a lot to go through the stimulation trials. I am hoping that DRG becomes perfected for people like us. I would be curious to see if you had any sacral leads. S2, S3, or S4.
I listen to audible books and home time is usually spent on my feet. I manage the days, but evenings are tough. I am having an evaluation from a PT tomorrow because I have SI joint pain that is now giving me pain on my left side. The pelvic pain was right side only from the start. What state do you live in?
Take so deep belly breaths and try to be at peace. I tell my pain, ‘okay you are going with me wherever I go so let’s do the best we can to manage to get along.’
I love the way you look at the meditation. I live in North Florida. You must be in a large city. I do not have anything like the 8 weeks course you refer to. I was never seen by a team of doctors except when I went through the Mayo Clinic, but they were not all specialized in Pain management. They were family physicians, a psychologist, a GYN, and a pain management physician was the last one. The pain mgmt doc wanted to do an injection there, but i choose to wait until I returned home which I did. One of the injections was done by a diagnostic radiologist with a Fluoroscope. That one did the most good, but he refused to do it again without CT guidance. He didn't have access to a CT machine and I have never had it done with CT. I was offered that by the Pain management, and I am trying to decide what to do.
I do believe the leads were at L2 and 3. Not 4 for sure. This was the DRG trial.
Hi sorry to hear more and more people are suffering from pelvic pain. I have been suffering for 4 years now and have had all the pain meds possible including palexia, lyrica endone, tramadol, slow release morphine and just completed a ketamine infusion over 10 day hospital stay of which none of it has worked. My GP has been very good and after he tried me on all of these he said that the problem with most of these meds they can actually increase nerve pain but as he said you don't know until you try them. I started off with an uncomfortable lumpy feeling in my rectum and after an examination was told I had a bladder prolapse, followed later with a rectocele and have a Boston neuromudulator inserted which helps only minimally I now also have pessaries of ketamine/ligocane which Ive just started fingers crossed. Because of the constant pressure pain I also take antidepressants worse part is it only stops hurting when I lay down or walk which makes relaxing a real challenge oh yeah I also get relief sitting on the toilet seat but after I've finished it really bothers me. Feel like its taken over my life, thank goodness I have a wonderfull husband and supportive family. As my husband says you just keep on trying different treatments until one day something just might work!
Where do you live? Your treatment has been so different than mine.
Hi everyone, I had a doc diagnose me w pudendal neuralagia but I also have I.c.clike Debra. The problem is, he knows no-one near me who treats this. I live in Spokane, was near the border of Coeur d Arlene, Idaho. Does anyone know how I could find a doctor to treat this. I'm absolutely in misery and I take high dose opiates and muscle relaxers. Any help would be appreciated. God bless to all of u who suffer so greatly. Also, I've heard of a doctor in Arizona. Can anyone tell me his name?
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