Not diagnosed yet, but after three years and my gyno thinking I’m crazy, I saw a new one today and he thinks it’s definitely my pudendal nerve. I am finally getting referred for an MRI and starting pelvic floor therapy. My symptoms come and go and are brought on by stress, exercise (lifting weights maybe??) and sitting. I have severe lower back pain. Certain pants and underwear make things worse. I have tried 2 pudendal nerve blocks to no success. Curious what others symptoms are. Does anyone else get fatigue, pain in groin where your underwear line is? Raw skin feeling? Swelling? Pain down the back of your upper thigh? Vision issues? Any advice or help is greatly appreciated. Some days are great. Others days are absolutely debilitating.
Pudendal Nerve Symptoms? Please read. - Pelvic Pain Suppo...
Pudendal Nerve Symptoms? Please read.
Hi meh6938
I got same diagnosis (PNE) and same type of answer " everything is in your mind" and my leg burning like lava from a volcano.
But now on an osteopathic treatment which has given me a different approach to my situation.
Good luck, you're going to needed.
Hi paine321 can you please tell me what type of osteopathic treatment you are receiving .... I am going to start with osteopathic muscle treatment this month I had one treatment and it did seem to help is this what you are doing...Thanks
Hi pizon
Osteopathy is a comprehensive treatment involving muscles, joint(ligaments) and therefore nerves as an integral unit.
Every person is a diferent story every single treatment differs from the rest and so on.
It is not a short process but one does get some alleviation from the symptoms the goal is to archive progressive improvement in you condition but the key part is to be consistent and thorough in and during the whole treatment.
Treatment generaly consists focusing in applying the manipulation in the three main areas of involvement neck, middle back and lower back to get the linking dynamic connection among the three so then to see the reaction of one's body and based on that fact to take the best course of action which means what will be the next step on your treatment.
Make a lot of sense for me and it is the right way to go for many conditions but my big question at the end of the day is why this discipline is not considered and simply omitted everywhere ?
If any query i can help you with, you'll be most welcome.
Thank you very much for your reply and I have the same question as you and also why dose the medical community not treat the whole body I have has such horrible experiences with medical dr.'s I won't go back again I am getting ready to start what is called Osteopathy message technique very similar to what you are doing however he focuses on the area where the tightness is very non invasive much luck to you and keep me posted on your recovery
I have all your symptoms except that I have severe left abdominal pain. I feel like i’m sitting on a pack of lumps in my belly and they throb and react to what I eat. The scan showed nothing for me on the left even though I’m in severe agony.
I’m sorry to hear that. I’m hoping the MRI atleast shows something. It’s so frustrating because sometimes it feels muscle related, sometimes skin related and the pain moves to different areas. Then I’ll have some days where I’m perfectly fine. I’ve tried eliminating foods, not exercising, standing instead of sitting.... i might notice some small changes but nothing major. The only thing that helps usually is a hot bath. I sit at work and can’t wait to get home to take a bath. 😕
Hi
Gosh, we're all in same boat here. An array of symptoms - mine range from severe burning of rectum and vagina, pressure pain on my back like bowel pressure against coccyx, really bad pressure pains in abdominal cavity, burning vagina and sometimes a painful itchy feeling, feeling skin is raw but it's fine to look at...the list goes on. My GP didn't even know what Pudendal Nerve is. Seems no one on UK deals with nerves in the pelvis except physiotherapists in mainstream medicine.
I paid to see the team clinician in Bristol who reckons nerve not trapped but severely compromised by pelvic floor that doesn't move it's so tight. Referred for physio and horrible pain meds that don't do anything. The MRI scans they say are useless for diagnosis for Pudendal Nerve problems but gynaecologist etc continue to do them.
So last week went to Osteopath who was brilliant. Understood. Thinks she can help. Very knowledgeable re Pudendal Nerve. Very thorough examination and assessment.
I agree, it's quite ridiculous we are not seen as a whole person and no specialism deals with pelvic nerves nor pelvic muscles. Worse, this ignorance amongst gynecologists etc is that they are often the ones responsible for onset of symptoms with their brutal examinations and operations. They are in denial! Also awful that they don't recognise the good that osteopathy and chiropractors can do so we are left to help ourselves by finding the right people and paying.
When I'm better, and we will all get better, I'm going to make it my mission to educate the general public about Pudendal Nerve problems and hopefully shame mainstream medicine into action.
Too many people are suffering needlessly being passed from one consultant to another and getting no answers.
Thank you to everyone who is on this website. Together we have strength.
Best wishes to all from Korin
I am with you...let's all try to figure out how we can start a movement!!!I was wondering if maybe we talk to government healthcare officials???
Yes. We should do something. It's quite ridiculous. Other countries seem much better. Especially Australia.
It’s an MRI/MRN that will show the pudental nerve. But not all radiologists know the way the machine needs to be set to obtain the results they’re looking for. If your Dt is interested in calling a Dr who knows, Dr Chhabara at UTSW in Dallas is knowledgeable regarding the procedure.
i've been trying to get back to you but without success. How did you get on with the last specialist you saw? B
Hi
Well, professor King looked at MRI scans and has concluded that the Tarlov Cysts aren't causing my pain or problems. He couldn't help at all re Pudendal Nerve.
How are you?
I hope I am replying to Korin. My MRIs have been seen by half a dozen specialists in England who all say the cysts aren't causing bother---yet one sent to Dr Feigenbaum brought a phone call from him saying "Anyone with cysts like these in the butt must be in agony!" I'm still in awful pain and it is now affecting my walking. As the pound sterling seems to be down, the cost of an op will probably be much more---but I haven't persued that any further. Do keep in touch and let me know how you are and if you make any break throughs.
Hi I read your post with great interest as I have all the same symptoms as you was diagnosed with pudenal neuropathy and offered pudenal nerve block but chickened out if this as heard mixed reactions. I am interested to know have you started your osteopathy treatment? Had it helped? What is involved in it ie what do they do? Thank you I do hope it has helped you and given you some relief x
Hello lovely, thank you for your message.
The osteopathy was definitely helping. I have seen two osteopaths - one of whom trains others in myofascial release. She then was unavailable and had two appointments with lady who had studied under her. It was hoping release things but then came the lockdown.
I'm now having sessions with a pelvic floor physio Online. She was recommended by colorectal surgeon.
Also doing the curable app. Early days but interesting results.
Learning to pace myself which is helping.
I haven't been able to take meds like Gabapebtin because of extreme side effects. Diazepam has given some relief.
Are you in the UK?, How are you getting on during lockdown?
Please stay in touch.
Wishing you progressive recovery.
Best wishes from Korin x
What were your side effects from gabapentin?
I experienced awful hallucinations even at low dosage. I think this is quite an unusual reaction.
Hi Korin I am in Aberdeen Scotland I was coping with being 40mg of Amytriptylline which was working for a little while and was offered the pudenal nerve block but did not take it. My symptoms over last few weeks have been a lot worse and I am not at work sitting all day but doing more exercise so do not know what to do for best. I was going to a physio for something else and told her and she gave me acupuncture but only managed to get one session before lockdown so was not able to tell yet if it would help. Good to read you have had some help. I hope I can get a plan in my mind to try once this lockdown over. Please let me know how you control progress wish you all the best x
Hi Korin, I have the same symptoms as you from a tight pelvic floor. Had a baby 7 months ago. It's been awful. I'm in the UK and ended up diagnosing myself. Where are you based? Please feel free to PM me. Be good to have a chat. Jeanette
Hi Jeanette
I have sent you PM. Sorry for spelling name wrongly in it.
Meant to say....some interesting stuff on curable app including interview with Evelyn hetch a pelvic floor physio.
Best wishes from Korin
My right side groin on the underwear line all the way around is a dull ache to unbearable nerve pain. Also when I sit. My butt hurts with nerve pain also. Also have nerve pain running up and down the front and back of my right leg. Hurts to drive at times. Only relief I get is a really hot bath or laying down.
I think we are twins. Does yours come and go? Sometimes, like yesterday, I will have days where I’m perfectly fine.
Mine is constant. I find out friday if its entrapment. Im getting 6 weeks once a week injections and all guided with ct scan so he will see what the nerves look like. Being my pain constant and of course worse by the end of the day. I just got si joint injection for my butt pain and its also relieved some of my pn pain in my groin. I feel so much better other than the site pain where they put the needles. I am so thankful I found a obgyn and knows this condition and treats it very well. On the 6th injection I am also having lap endo surgery to clean up endo mess. I live in Chattanooga and his name is Dr Furr if anyone is willing to travel. He is well worth the trip!!!!! xoxoxo
Hope your injection on Friday worked! This is miserable stuff!
Hi Susieqblue - any updates? I see a vulvar pain specialist in St. Louis on Tuesday. I’ve had over a month with only minor flare ups.
meh6938, I am doing better so far 2 injections in and all had to reschedule and stop until may. I do see a difference in the intensity of the pain. Its way lighter. I still have some bad days but my buttocks feels alot better also. I do still have nerve pain but not as bad just like my groin. I am hopeful now. Surgery to decompress is not off the table yet. Just being patient to see if all and all I feel better. There is some light when I was starting to face some dark areas. I also may do some therapy online with you tube because my insurance company has a co-pay and I am broke from what I have been through already!!! Please keep me updated my new friend!! You are not alone!!
Loved the specialist I saw. She was kind, gentle and actually listened. And didn’t treat me like I was crazy. She said she thinks I have pelvic floor dysfunction and generalized vulvodynia. Somehow we have to train my body to quit firing all of those pain signals to my brain. I am going to start with pelvic floor therapy which I actually start today and she said to contact her in eight weeks if I’m not feeling somewhat better she will start me on gabapentin. I’m sure I haven’t reached the end of the road yet but at least I have a plan which no other doctor has given me. Before she walked out, she said “I am here for you.” 👏🏻 👏🏻👏🏻👏🏻
I am so happy to hear that. Keep me posted!!!!
Pelvic Floor therapy was meh. 😕. She was puzzled by my pain coming and going but did say my hip flexor muscles are very tight from going distance running. Also, my tailbone is curved under possibly causing some of the pain. I left feeling discouraged. I wanted her to say she had tons of patients just like me and my symptoms are normal.
I tried pt but I have too much nerve pain and it just made it worse for me. I gave it 10 visits. The injections so far have made it better which that means mine is compressed. I will have endo surgery soon and I think that will show more. xoxo
After two years I've been in injections, chyros, physios and I'm seating at the startinting point.
I think in my case if i had opted for a osteopath i would've gained a lot of time, because this avenue has been the one giving me more progress in my condition.
Symptoms are normally very similar not to say exactly the same.
The best of luck.
I live in the states and I was under the assumption that DO’s were doctors of osteopathy and would treat the whole body. My mistake, as I tried to choose a new physician with that title. He is nothing more than the pill pushers I had in the past! I feel holistic is the way to go but cannot find one that would help me in this area. PN and sciatic nerve involved.
Hi I put the below post on another listing about pudenal nerve pain and then just came across your post...… See below
Hi, I read your reply to Angeleyes370165 (thank you Angeleyes) for your questions and explanation of what you are suffering from... I too am in Scotland and I think I have been diagnosed with Pudenal Neuralgia. I sit at a desk all day and like you say my symptoms totally came out of nowhere. It is such a bizarre thing albeit excrutiatingly painful. At first I thought I had vulvodynia as sometimes pain seems to start around the vulva etc., but eventually it is just a searing burning pain... like someone has poured burning water or like acid burning feeling on my buttock, it is only on my left side. I tried so many things to alleviate it, thought it was my underwear, bought massive size knickers, too tight jeans, bought bigger sizes. I wondered does this feel like either of your pain that you have suffered. It is only brought on by sitting down at my desk. My GP prescribed amitriptyline as said it was definitely nerve pain. This helped initially but then started to come back and I had to keep taking more of the tablets. I have private medical cover so what referred to a pain management specialist, who eventually said he thought it was pudenal nerve entrapment.... ( I was not convinced as he sounded a bit vague about it all). He eventually said I should have a pudenal nerve injection and this would confirm if this is what it was, but I chickened out of going through that.... read mixed stories/outcomes, so said I would just try and continue keeping on top of it with tablets..... but now last few days it has come back with a vengeance and I so unsure what to do now as I do sit down all day at work and by end of the day I am almost in tears...… So sorry to go on about it all to you girls, but wondered if you could say what your symptoms/story is as sometimes I think it must all be in my head and no-one really very sure how it has come on/exactly what it is. Thanks so much x
I was so very interested to read your post as my symptoms are so bizzare also. Like I say I am not sure if it is Pudenal Nerve Neuralgia, but I also have been putting up with this/suffering with this for like 3 years. Sometimes I think just my knicker elastic rubbing triggers it off..... currently suffering big time at the moment. I sit down at work all day and therefore get no respite from it... to the point think maybe I need a job where I do not sit down all day... (ridiculous that it should come to that). I am too scared to try the pudenal nerve block injection and also been told that would not cure it. Sorry for my rant.... but so good to hear from someone with similar symptoms, not really something you can talk to people about and sometimes I think I am going crazy and it is maybe all in my head. Do not really know what to do now. Do you know what this DCT thing is. Thanks xx
Hi Ailiesonkerr
I have similar symtoms also same side (left) and also answered by doctors that is all in my mind.
Doctors prescribed me some medicine took them during a year of my misery, I'm now starting my 3th year.
I decided to stop after a year because a got no results, just got relief for a short time and then back to step one again.
The same story with my prolotherapy injections positives results for a couple of day and that was it.
I recommended no to go for medicines at this stage.
I'm looking foward to start with a ostropathic treatment after this pandemia is over. I positively thing a non invasive treatment is the way to go, the moment one starts with invasives treatments it seems makes things worse the rate of success in PNE decompression is ridiculously low at the end you end up worse in many cases than before the operation.
Traditional medicine has no answer for this condition.
I positively believe osteopathy will give some relief and I'm putting all my hopes on it.
I have no other option.
Likely for me I work standing all day long.
Good luck.
I swear our symtoms are the same but mine are right side. My right groin and buttocks and nerve pain up and down front and rear of right leg! The injections made a huge difference which means I have it and I have nerve entrapment. The injection to numb is really the way they tell if you have it.
Yes it does seem we really do have similar symptoms, what is the SI injections you have been having? You also talk about endo mess. I previously had a complete hysterectomy because of endometriosis. Hope you continue to manage to keep on top of your pain x
They are pudendal nerve injection. 1 a week for 6 weeks. I had 2 then hold with the virus, back on for 4 more in may and endo surgery.
I have an MRI scheduled for Monday. Praying for answers.
MRI showed NOTHING. 😔
I’m thankful yet frustrated.
Dont give up, pn almost cannot be seen. But diagnosed by injection. Ive been told that!
Hi I read your post with great interest as I also have pudenal neuropathy as they call it, but it is such a strange thing and I was beginning to think it was all in my head. I was supposed to have an injection to see if it helped and would finally confirm that is definitely what it was but I chickened out of having it as read sometimes makes it worse.... my pain is especially when I am sitting and sit all day at work that by end of day I am nearly in tears. It is on my left side upper thigh and buttock and is like someone poured acid over my skin excruciating burning and raw feeling. In the beginning underwear anything touching the area made it worse bought bigger/lighter material pants all which has not helped. Dr put me on amytriptilline which did help in the beginning but not really working now. I would be interested to hear how you get on with your pelvic therapy I hope it helps you x
I’ve been meaning to ask - does anyone else’s pain flare up when they get angry?
150%. My pain gets very bad if I get angry. I think it’s because my muscles tighten up worse and nerve endings Are flared worse with it. Also stress does this to mean. Hope that helps. Deb❤️🦋
Just wondering? How are you doing?
So much better. I quit lifting weights and quit running and started going to a pelvic floor physical therapist. She does internal work (it was a little weird at first) but so worth it. I also have test tube ice things that i can use when I’m feeling it act up. It’s been life changing. I honestly haven’t had a big flareup since probably March. PT has given me so much hope.
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