Pelvic Pain Support Network
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I need to know if I’m the only one 😿

Hello everyone,

I was always under the impression that my suffering of the burning sensation that I have in the vagina and rectum 24 hours a day 7 days a week is all part of Pudendal neuralgia and I’m not the only one. Recently, I was told by someone that it’s not Pudendal neuralgia and I’m a little confused. I never get any relief from that burning pain. It doesn’t matter what I do. I’m constantly burning 24 hours a day 7 days a week. The reason I’m really confused is because I was told it could be my interstitial cystitis doing this. I can’t distinguish between the two. Please tell me I’m not alone. Thank you. Feeling kinda alone Debbie. 😿

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Hi Debbie, sounds terrible and no you are not alone.. were you diagnosed with PN? Burning in vagina and rectum is typical for PN sufferers

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Yes, I was diagnosed with PN just about 2 years ago and just this past December I was diagnosed with IC. My urogynecologist is telling me that the burning is coming from the IC but I’m confused because the rectal burning and the coccyx and sits bone pain. I always thought that was PN pain. The doctor did a new procedure on me and is claiming my Nerve is better but I truly don’t feel it is because the burning has gotten worse. I thought for a while there I was doing ok. But I for one know that there are several parts to that nerve and injecting the back of the vagina isn’t going to get the rectal part of the nerve. Yet, I’m still burning in the vaginal area as well. It’s supposed to take a anywhere from 6-8 weeks for this procedure to work but I’m starting to think it didn’t work. I have lots of questions and will be calling that office first thing Monday morning. This pain can’t all be bladder pain. I’ve had it toooo long. Thank you for your reply. I’m just thinking the procedure didn’t work but I would hate to think it made me worse. God bless you Debbie

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IC can most definitely cause pain in other places, I get back, hip and leg pain when the IC is flaring up.

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I get that. I always thought that was my Pudendal nerve doing it. What about the coccyx bone and sits bone. Do you have pain there? Thank you for the information.

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Maybe it’s possible to get both? Are you on medication for neuropathic pain Debbie? If so, is it helping?

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I have hAd this for 17 years now I take over 25 pills a day and now 2 new ones for the bladder. Yes I’m on everything. Nothing seems to take it away just take the edge off. ThAts all I does. I’m losing my mind now literally. Cause since I had the cystoscope done my pain for the last 3 has been horrendous.

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Have you seen a myfascial release therapy..

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I had physical therapy done for 2 years. Last time I went to her she started to make me feel worse. 😿

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What procedure did he do?

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I had scar tissue removed from a botched vulva vestibulectomy and Botox injections and amniotic fluid injections into the vagina wall.

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So w PN started after that surgery? Vestibulectomy?

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No I had PN before that from a fall I took.

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But I didn’t know it was PN. I kept getting misdiagnosed for years.

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I hope these injections will help somehow.. I also have a PN, it’s horrendous, and many doctors don’t even know about this monster illness

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No you are 100% correct. I will keep you posted on the injections ok. The Botox did help the muscle spasms but I still have the burning. I’m just not sure if it’s my IC or my PN. It’s so frustrating. It really is. Thank you for replying. God bless I’ll keep you in my prayers. Debbie.

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Did you try to research on decompression surgery? Maybe you have PNE and surgery will help? Also I saw on this website new stem cells injections in US, one doctor does it

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Mine is vaginal,rectal burning,coccyx,buttock and I don't have ic,I've had pelvic surgery

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I researched both. My doctors don’t feel I should get the surgery, and my friend was scammed out of a lot of money with the one doctor who does the stem cells if it’s the stem cells taken from adipose tissue. If these were injections don’t work. I’ll continue to now treat the bladder and get future nerve blocks like I was doing in the past. 😿

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My burning has gone on for over 2 years, sometimes worse than other times. I have grade 1 bladder prolapse and grade 2 rectum prolapse. I try to remain positive but the constant burning is awful. English N hs don,t seem to do anything about it until it’s all falling out or causing toilet problems, painkillers don,t seem to help.

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Hello,

I can sympathize with you. I burn all the time and nothing takes it away. NOTHING. I can offer you this advice. I have found that besides coconut oil the crisco that you bake with feels very nice when you put it on. Also you can put it in the refrigerator and it doesn’t get hard. It’s soft and easy to smooth on the area, so when it’s cold it does feel good for a few minutes. I hope that helps a little bit for you and everyone on here if you don’t all already know about it. God bless you. Deb.

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Also sits baths with epsom salt helps me a little bit it doesn’t take the burning away. Sorry takes the edge off.

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I have had PN for several years and was diagnosed with IC in April of last year. Both can cause the horrid burning. Initially I thought the urethral/bladder burning was caused from the PN and didn't seek help, just thought the PN was flaring more than usual. After being diagnosed with IC I have found eliminating certain foods from my diet reduces the burning and I can now distinguish between the IC burning and the PN burning. In October of 2017, I had Botox injections in my bladder and it has greatly reduced the intense burning. My doctor explained it to me that mine is nerve driven by the pudendal nerve originally, but there are many other nerves in the pelvic area and it can cause what he calls cross-talk pain and the bladder pours out chemicals causing spontaneous spasms we have no control over. The Botox paralyzes the bladder temporarily, calming the cross-talk pain. He says his clinic usually sees his patients return every 6 - 8 months for repeat injections. Until I had the Botox injections and discovered my particular food triggers my urethral/bladder burning was non-stop as well so I feel mine is more IC related. My PN burning is located in the vaginal/rectal/sitz bone areas. I think we are all unique and different and have to listen to our own bodies, but thought I would share my experience with you because I have had very positive results with the bladder Botox injections for the IC. I am so sorry you are suffering and pray you find a solution that brings you relief and is a good fit for you.

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Thank you so much for this information. The doctor who diagnosed me with the IC wants to do Botox into my bladder. The thing is it’s very costly to keep seeing him as he is in Tennessee and I live in New York. I just found a doctor in New York and I’m hoping my Tennessee doctor will converse with the New York doctor on the matter at hand. I don’t see why he wouldn’t. So, the sits bone pain and coccyx bone pain is probably still PN pain then. Am I correct in thinking that way? Thanks and God bless you. Debbie.

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Debbie I will pray the two doctors will network in order to help you...it only makes sense given that travel is typically a major trigger for anyone with either of these two conditions. The sitz bone pain was severe when I was first diagnosed with PN so I do associate it with PN, not IC. I have two pudendal inter-stim implants to help with my pudendal pain and it has reduced that by 50%. I still take a low dose of hydrocodone daily as well in order to continue to work part-time. Hopefully your new doctor will help you sort things out and help you find healing through the best plan for you. If you can, please keep us updated. Prayers and Best wishes!

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Thank you. I had the implants. But the doctor I went to in New York didn’t do a DRG stimulater. He put the leads in from T8-T12. I was basically used as a research project knowing I wanted and needed the DRG. He had to remove it because it was making the PN pain worse. It helped my back pain but that was it. It was horrible. I kinda have no luck. For 17 years I was misdiagnosed until 2 years ago. And was getting completely wrong treatment that made me worse. Hence the vulva vestibulectomy that I got 4 years ago. I wasn’t as bad until I was cut in the vagina. That surgery basically destroyed any life I did have left. 😿Deb

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Debra, have you tried wearing a sacro support belt? Possibly all pain related to an “unstable sacroilliac joint”. Helped me a little.

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No I never tried that. But I used to be able to feel my sacrum slip on me in the past when I was working. It doesn’t happen anymore though. But I think it had a lot to do with core strength and I could forget core strength now from all the compensatory motions I do to avoid the pain. I’ve created a monster of my body. I have muscle imbalances everywhere. It’s horrible. I’m going to try to start to work normal even if it kills me because I’m causing so much damage everywhere else. My physical therapist says my body is so screwed up. I know this already though because I used to be a physical therapist and I can see what I’ve done to myself. This is really a horrible disease to have. I pray for all of us on this site. It really sucks. Excuse my French. I just bought myself a mini massager a that they use for the hand to work on my scar tissue from unnecessary surgeries I had and I also spent money on a seat that is heated and does deep tissue massage to the entire back and neck. And I bought a suboccipital release block for my neck because all of these things are bothering me besides the Pudendal pain. Plus I bought a trigger point ball instead of my gum ball ones I’ve been using for the muscles in my butt. I do so much already but I feel if you miss one day of something it sets you back. It’s like you have absolutely no life because of the pain and no life because you are treating yourself daily not to mention all the doctors appointments you go to on a weekly basis. Sorry I’m just venting. And forget about sleeping. Lucky if I get 3 hours a night. Sorry to vent. Just a bad night. Thanks for the information on the belt. I may get it. My friend use to wear one when we worked together. She said it helped her. God bless. Deb. 🤝🙏😹

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Debbi I have had pudental neuralgia for seven years of hell with excruciating rectal and vaginal pain. This is the first time I am getting

relief. My Doctor tryed compounded suppository of hydrocortizone

and lidocaine-------I also was burning 24/7------Doing so much better

like a miracle! Hope this helps!!! trishj46

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Thank you Trisha I’ll see if my philly doctor is willing to try this compound on me. Deb👍

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I really hope so Debra! For seven years of hell and trying everything------this is a miracle! My Doctor has never given up

on me! The compound consist of 25mg of hydrocortisone and

5mg of lidocaine every eight hours! Your in my prayers and let

me know how you make out. I am in Philly too, right in Delaware

County! God Bless!

trishj46

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This may seem like an odd question but you don’t get infections from the cortisone. I was just curious. I use to use that on the outside of me when I was flared up and I got a few yeast injections from it. Just checking. Deb.

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By the way. I travel for my team of doctors. Yes, Philly people are great but I’m from New York. Lol. We aren’t so bad either. Deb.

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I can not deal with steroids by mouth! I have no infections

the compounded medicine can be totolly absorbed and is not the same as by mouth or etc as I understand! I just know if you are as desperate as I have been, I was willing over over seven years to try everything, and many failed! I would not give up till I tryed everything even if some caused worse results! You do what is best for you! God Bless!

trishj46

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I understand. You do know how long I’ve had this for. 17 years. I’ve tried just about everything. I have to be careful because I do get infections. I was even doing 2 nerve blocks a month up until last month. This is the first month I’ve had no nerve blocks in 2 years. The blocks were just anesthetic the last year. No steroids. They seemed to take the edge off. That’s all anything I’ve tried does. Takes the edge off. Never a cure. I’ll talk to my philly Doc. See what he says about the compound. Thank you. Deb. 👍🙏 God bless you too.

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I have PN and take Gabapentin. It’s a godsend, but it doesn’t touch the burning. I have a vey small amount of morphine prescribed and that does help. BUT, I have a condition called Lichen Sclerosis for which I use a strong, topical steroid, called Clobetasol, three times a week. Vagina, perinium and anus. Gynecologists can miss it, and a biopsy is required if suspected in the US. Using clobetasol,correctly, stops my burning. No need for morphine. But when I’m lax on the regimen it comes back. Make sure you don’t have this condition.

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Hello,

I was just biopsied for this. My doctor who diagnosed me with IC thought I might have had it but it came back negative. Gabapentin gives me very bad side effects in my legs but I’m ready to outway the risks for the benefits. I take 1200 mg. I wanted to stop it but I think I need to stay on it. The burning is so out of control. I’m going to a New York urogynecologist on the 31st. I’m hoping he will use Botox in my bladder since my other doctor said I was a candidate for it. I don’t think that will do anything for my PN though. Thank you for the information. Deb👍

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I didn’t mention this before but I think it’s important and I’ve tried to make the point to my docs. They don’t seem interested. Getting ON Gabapentin is one of the most difficult things I’ve ever done. There would be days (in a row) that I couldn’t get out of bed to make a cup of coffee or bathe. I’m one of those people who most probably would have discontinued use because of side effects. But it relieved the pain. I had to stop working, and I loved my work, but I was backed into a corner. I started with Lyrica in October of 2016 but quickly switched to Gabapentin for cost reasons. Same stuff pretty much. Point is, it’s only within the last month that I’ve come up from under the side effects on a regular basis. That’s a LONG time. Also, pain relief is more consistent. I still use some morphine, but less and less. It’s almost as if my body is becoming intolerant to it.

The doctor says that my experience is VERY singular. But I think it’s possible that there are others like myself. The pain I experienced was completely debilitating. With opioid medication I could function, but not in any meaningful way. Pain was still always there. This is a whole different story. Over the last month everything has changed with respect to the gaba, and my whole life. Fingers crossed. BUT one year and three months to get on the drug.

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I’m on gabapentin. I did stop it and noticed the difference in my bladder. It doesn’t stop the burning but my god my bladder pain was so much worse. So, I have to deal with the side effects and they stink because I’m always exhausted and I fall a lot on the gabapentin. My legs give out and I get spasms and leg cramps too. But I would rather deal with that then feel like I’m passing kidney stones every day. Thank you and I agree with you. Bless you Deb

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Does anyone find their period effects their Pudendal Neuralgia? I have lots of light bleeding leading up to my period too.

The treatments for PN are so scary and seem to have low success rates so this is something else I have been looking into:

tmswiki.org/forum/threads/l...

Also, you can’t see those ‘success stories’ from people cured from PN until you log in but go to pudendalhope website and go to the success stories sub forum and read the stories by:

Susanjane

Bunny

Ezer

I read the book: Mindybody Prescription by Dr. J Sarno, M.D. and also Great Pain Deception.

I know this is not for everyone but I’m giving it a go.

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I belong to that site also. I just tried one of the proceeds from that site and it didn’t cure my PN as of yet. I still have 3 more weeks to see if it works but I’m kinda losing some hope now. Thank you. Debbie. 😔

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I’m not sure what you mean by three more weeks? Some people read one of the books e.g. Mindybody Prescription and are better overnight, others take months. Do you mean you doing one of the online programs on tmswiki? I don’t think the idea is that you’re necessarily cured by the end of it, depends on the person. The Great Pain Deception is also worth looking at. Good luck x

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No I had a procedure done by a doctor recommended by Pudendalhope.com. The procedure he did is supposed to be curing ppl of PN. I had it done just 4 weeks ago and it’s got to take full effort by 6-8 weeks. So I’m disappointed because at first I did feel a difference but now my pain is back and back with vengeance. So, that’s what I meant by 3 weeks. I just went on the site you posted and I’m gonna read it tomorrow. Thank you Debbie.

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And thank you. It looks interesting. I somehow think this is the way to go. Deb.

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The success rates for treatment and surgery for PN are at or lower than placebo rates. I’d really give those books a shot. Read the success stories. If they can do it, so can we :)

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I didn’t have surgery other than scar tissue from a botched vulva vestibulectomy was removed. I had amniotic injections. It wasn’t the decompression surgery. I was advised by my team of doctors not to have that surgery. I’ve seen the success rate and a lot of my friends have come out worse. What is that site all about? Can you PM me. Thank you Deb.

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All the info is on the website. Read The Mindbody Prescription or Healing Back Pain (its not just back pain - all pains covered) and go to amazon and read the reviews of people cured by reading the books. Google “Thank you Dr Sarno”, website set up by a patients when he retired. Then YouTube “Sarno cure 20/20”. Dr. Sarno realised that all his patients with chronic pain seemed to have similar personality types: perfectionist, worrier, goodist, hardworking, legalist, stoic, people pleasers, low self esteem etc.

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Ok. I will. Thank you Deb.

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Debbie, what injection did you have? Amniotic allograft it stem cell? Thx

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No not stem cells. Won’t do that. It was amniotic fluid and I got Botox in Tennessee. It is covered by most insurance companies. That’s all I’m gonna say because I know someone got thrown off the site for saying more about this procedure and I don’t want that to happen to me. I like this site. Sorry. Thanks. I guess if you want more information on it join the Pudendalhopesite besides this one. That’s all I can say. Sorry. Hope that helps I may have said too much already. Deb.

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Thanks Debbie, i am on pudentalhope too, but don’t know there anyone who had it done.. I don’t understand why would they block people for such posts, we all exchange here information, that’s what the site is for I imagine? You are not advertising anything, but people post on here what procedures or surgeries they had done.. it’s normal. I will keep my fingers crossed for you, don’t worry prematurely. I believe that our anxiety and fears prevent us sometimes from getting better, try not to think negatively and wait. Sometimes it may take longer. I had a block a few moths ago and instead of 2 weeks it took 6 to take effect, after I completely disregarded that procedure and forgot about it, weeks passed then I realised I was pain free.. the bliss lasted two weeks only, until the doc examined me and it flared. My point is don’t despair, it will work, it must do. x

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Thank you so much. Ironically. I was going for blocks 2 times a month before I had this done. And on Saturday I went to have another block because the pain was too great even if I only get 2 and a half days of relief because that’s all my blocks last for. They didn’t do the block on me because I’m really sick. Said I couldn’t go under anesthesia. I feel somehow that was Gods way of saying give it more time. A block could ruin the procedure completely. So, I was supposed to get the block done on Tuesday but I’m still sick and had to cancel again. It takes 6-8 weeks for this procedure to work. I’m just 6 weeks now. I have to at least follow the protocol to know if it worked or not because I know it worked for a very good friend of mine. Thank you. And yes you are right. Other people post surgeries they have had with I might add doctors that don’t take insurance and you have to pay out of pocket leaving you more broke than you already are because of this monstrosity of an illness. God bless and keep in touch. Deb

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My friend got scammed with stem cells. Be very careful out there. A lot of people like to take advantage of us because we are sick and would do just about anything to get our lives back. Key tip if it’s not covered by insurance then it’s usually being done for the wrong reasons. That’s what my doctors have told me. Hope that helps to. Deb God bless. 🙏👍

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