Hi everyone, I’m currently taking pregabilin (150mg pills 3 times a day), 450mg total. I’m thinking about weaning off from 450 to 300. Mostly because I’m taking this pill for neuropathic pain ( I have pelvic pain and nerve issues) but I’m not really seeing the effects anymore. I don’t want to continue taking a medication that is no longer effective. Any tips on going from 450 to 300?
I have a tight pelvic floor and pudental neuralgia symptoms. I’ve had this for 3 years. Since May, I’ve experienced itching on the bikini area, groin and outer labia. I believe the ilioinguinal nerve is involved here because of the bikini area and groin pain? What could be the cause of this? Does anyone have some insight?
I have a tight pelvic floor and pudental neuralgia symptoms. I’ve had this for 3 years. Since this May, I’ve experienced itching on the bikini area, groin and outer labia. I believe the ilioinguinal nerve is involved here because of the bikini area and groin pain? What could be the cause of this? Does anyone have some insight?
Hello!
I will be moving to nyc soon and I would like to establish a care team there. Does anyone have recommendations for a good pelvic floor PT and a pelvic pain specialist?
30F and have tight pelvic floor issues. Intercourse has gotten harder over the past year and a half. My partner says that it’s hard for him to get in even when we try foreplay. Eventually it goes in, it’s painful but I push though it and feel like it’s pleasurable after a few mins. What are your tips for making this easier on your partner and most importantly having it not cause you pain? I try to do the wand twice a week and do stretches but that has not really helped yet.
Dr. Hibner in AZ uses 400 units of Botox. Apparently, this is different from other physicians because they normally use 100 units which he thinks is very low to tackle a muscle like the pelvic floor. His Botox prices are 12k for the Botox and a bilateral nerve block. The nerve block is so that the nerve is not irritated and cause the pelvic floor to spasm. Has anyone had any experiences with Dr. Hibner and this method? Is it worth it?
I know I’m about to get some heat for this question because it’s been asked before but hoping for some new info based on anyone’s experience but… does IT track someone’s location constantly when they work remotely? Before this current administration, I would work from another state for a few days and never told anyone. It was never flagged but I haven’t done it since the before times.
I’ve been on amitriptyline for a month now. I’ve increased it to 25mg from 12mg. I use it for nerve pain. Since yesterday, I’ve been having an awful feeling on my chest like it is closing in. It feel like a deep dull ache on my chest. Also, this feeling like something is stuck? It’s really scary and I want to taper down from 25mg to 12mg but scared about the withdrawal?
I have been reading this book to help me deal with my pudental neuralgia pain. Pain started at the rectal area and slowly started to transmit to the vaginal area. In the book, the author talks about how our brain is stuck on a pain loop. The pain is real but it’s not as loud as we make it out to be. Our brain is processing those pain signals incorrectly. That could be true in some cases but I have issues with that premise. What if you actually do have nerve entrapment and those signals of pain are real? By choosing to not believe the pain you are feeling is justified, aren’t you just ignoring your condition? What happens in the case that it gets worse? On the flip side of that coin, if one decided to get nerve entrapment surgery, is surgery even worth considering? Because no matter what you do, your brain is stuck on the pain loop so even after surgery, your brain will interpret the pain signals the same? Is the real answer learning how to deal with the pain? Appreciate your thoughts!
I have been reading this book to help me deal with my PN pain. Pain started at the rectal area and slowly started to transmit to the vaginal area. In the book, the author talks about how our brain is stuck on a pain loop. The pain is real but it’s not as loud as we make it out to be. Our brain is processing those pain signals incorrectly. That could be true in some cases but I have issues with that premise. What if you actually do have nerve entrapment and those signals of pain are real? By choosing to not believe the pain you are feeling is justified, aren’t you just ignoring your condition? What happens in the case that it gets worse? On the flip side of that coin, if one decided to get nerve entrapment surgery, is surgery even worth considering? Because no matter what you do, your brain is stuck on the pain loop so even after surgery, your brain will interpret the pain signals the same? Is the real answer learning how to deal with the pain? Appreciate your thoughts!
I’ve been going through a bad flare up this month. Rectal itching and burning, perineum itching and vestibule burning. For the life of me, I can’t find what is the trigger to the nerve irritation. I thought it was constipation but when I poop and don’t strain it still happens!! I thought it was bending forward so I stopped bending! But it’s not that because I haven’t bent down the whole day and I still have these sensations!! I thought it was sex! Didn’t do do that for a month! I guess this is more of a rant than a question but I can’t seem to get this under control. My PT has not really been doing anything that helps yet. I feel like no one can help me. I want it to all end!!
I’ve had a tight pelvic floor which then led to pudental neuralgia and vulvodynia. I’ve had this for 2.5 years. For the first year, life was somewhat okay. I had itchiness spams in the labia here and there and have had occasional flare ups but it would be over throughout the course of days. Also, pain with sex is happened but I’ve always been able to manage. For the past 8 months, I haven’t been able to sit on flat surfaces because I feel a lot of pressure and itching in the rectum. So for the past months, I’ve only had rectal symptoms due to PN. But now!!! For the past 2 weeks I’ve had awful burning sensation in the vestibule that goes all the way the labia and clitoris. It literally feels like the labia is so swollen and tight. Vestibule is on fire. Also, the area is very sensitive to the touch and burns when I pee. Walking is hard because everything rubs against each other. It’s so so painful and I don’t know how to make it stop. I’ve been mostly focusing on rectal symptoms with pelvic PT so now we need to pivot. However, my PT’s theory is that the roots of pudental nerve are maybe being pressed by the coccyx so she makes me do a lot of coccyx related exercises. When she does an internal exam, she tells me my pelvic floor is not that bad but I don’t understand how my pelvic floor can’t be that bad if I still have these new symptoms in the vagina! I still do the coccyx exercises she gives me but now I’m stressed because I’m getting worse and worse. I just don’t understand where these symptoms are coming from when they were never this strong before or long lasting. This is after trying 3 different PTs, 2 round of nerve blocks and Botox.
I got an MRI for pudental nerve entrapment due to my symptoms of rectal pain and itching. My symptoms are very strong but somehow I don’t have nerve entrapment? Insane?
TECHNIQUE: Multiplanar multisequence MRI of the lumbosacral plexus after administration of 5 cc of intravenous contrast.
FINDINGS:
Lumbosacral plexus: Normal course, morphology, and signal intensity of the lateral femoral cutaneous nerve, pudendal nerve,
obturator nerve, and posterior cutaneous nerve bilaterally.
Femoral nerves: Intact.
Sciatic nerves: Intact.
Muscles / Tendons:
Iliopsoas: Normal muscle signal. Unremarkable tendon.
Piriformis: Normal muscle signal.
Gluteal muscles:Normal muscle signal. Unremarkable gluteus medius and minimus tendons.
Hamstring tendon:Normal signal. Unremarkable hamstring tendons.
Joints:
Sacroiliac joints: Normal right sacroiliac joint. Mild edema along the left inferior margin of the sacroiliac joint laterally.
Pubic symphysis: Intact.
Hip joints: No hip effusion.
Bones: Normal marrow signal.
Vessels: Normal flow voids.
Abdomen / pelvis: No significant abnormality in the visualized posterior abdomen and pelvis.
OTHER: Susceptibility artifact from battery pack with leads extending through the left sacral neuroforamina and into the left
presacral space. Pelvic floor is low-lying; directed clinical assessment suggested for rectocele.
IMPRESSION:
1.\X09\Unremarkable lumbosacral plexus MRI without evidence of pudendal nerve entrapment.
2.\X09\Mild edema and enhancement of the left inferior lateral sacroiliac joint cord with mild sacroiliac anteriorly.
Need some tips!!! My vagina is super swollen, tingly and itchy and I don’t know how to make it better!! I don’t have pelvic floor PT until next week and the discomfort is so so bad D: I’ve tried a cold pack, sitz baths, creams. The lidocaine reduces it by a little but then it comes back with full force.
I guess I’m writing this as more of a venting sesh but also seeking advice on how to keep my mental health intact. I was diagnosed with PN when I was 27. I just turned 30 a day ago. I hate that for the later parts of my 20s I’ve had to deal with this god awful condition. Things were bad when I first got diagnosed, I was terrified of all these new sensations within my body. After being diagnosed and seeing a pelvic floor therapist and getting on the usual medications, I was able to handle my symptoms pretty well. The pain and itching sensation in the rectum and vagina was there but at a low volume. However, this past September, after a bad constipation episode that made me bleed, it’s all been downhill from there. The itchiness on the rectum never goes away, so to help, I had to start using a cushion to sit on. If I don’t sit on it, the rectum itches and I feel a lot of pressure on it. I’ve been on 600mg of lyrica. Things had been okay Feb-March, but earlier in April I might have had a hard poop and pushed through a PT exercise that caused me pain and little by little I’m downhill again. Added on top of that, I was dumb and forgot to request my medication and wasn’t able to get lyrica for a week. But what’s worse is that now I’m getting new symptoms? Like the itching sensation on the rectum feels very strong, the bottom of my buttcheeks are hot to the touch and burn, the ligaments towards the side of the vagina feel tight and weird, it burns to pee and there is also itchiness at the vaginal opening. It’s all bad and horrible. I also live in a city that has a lot of public transport so I constantly have to be walking or moving and it’s hard to do when my asshole is on fire. It’s like I’m in this pit of darkness looking for a way out but there’s just a void. I’ve tried things. So many things. Been in PT for 3 years, different therapist, same clinic. I got pelvic floor Botox, I got 2 nerve block injections, 1 did not work on the right side, second one worked on both sides but lasted a week. Next procedure: ganglion blocks. I’m frustrated of trying and not being able to understand what is flaring up my body. I wish it could to tell me what’s wrong and then I would fix it!!! If only. Also, my pelvic floor is overcompensating because of my weak core but when I try to strengthen my weak core, it flares up my symptoms. I don’t understand how I’m supposed to get better. My PT is trying to give me gentle exercises but I don’t feel like they work. Obviously this has a lot of impact on my emotional state and everyday life’. I’m so unhappy, disappointed, and heartbroken. Work is stressful. Life is miserable and I don’t know how to get out of this or who can help. I’ve asked about PN entrapment surgery to a doctor. He told me I don’t need it but how could I not when there is something genuinely wrong with my body! You can’t see it, but it feels so so so strong.