Pendulum Nerve Damage

[rarediva]

I have been suffering from chronic pain from injury to the pendulum nerve. I have tried meds, intense therapy and chiroprators and things seem to help for a short time and then it is back. It is absolutely ruining my life and I am desperate for help. Can anyone tell me how to find a doctor in Huntsville Al, Birmingham Al, or Nashville Tn?

[Hidden]

Hi, do you mean pudendal nerve as in the nerve that innervates the genitals and rectum? Sorry I've not heard of pendulum nerve'

[trishj46]

does any one know about pulsed radiofrequency for pudental neuralia?

trishj46

[Hidden in reply to trishj46]

Hi, you can google this for more information.

[Hidden]

Hi rarediva, I also suffer with Pudendal Nerve symptoms so I know how this effects you and it is a life changing condition, especially as by your photograph you are so young. However from my experience I would recommend that you google ' pudendal nerve specialist ' in your area. One thing is that the USA is far more advanced in the knowledge, understanding and treatment of this condition than where I am in the UK. The first thing is to go to a pain management consultant who specialises in the Pudendal Nerve to have pain management injections along side the pudendal nerve. The injection contains a steroid, Cortisone, which is an anti inflammatory medication also Lignocaine which is a local anaesthetic used to reduce pain and numbs the area. This will reduce the inflammation around the nerve therefore reducing the pain. This injection is given under CT Guidance so the Doctor administering the injection can actually see the Pudendal Nerve. The injection is given along side the nerve. Please google ' Pain Management Injections ' also Pudendal Neuralgia and Pudendal Nerve Entrapment. The anatomy of the Pudendal Nerve, which is very complex as there are three branches to each Pudendal Nerve on the right side and left side of the body. This condition will continue to get worse if you don't get the right management which is why I advise you to google a ' pudendal nerve specialist 'in your area and get an appointment as soon as possible. The ' Pudendal Nerve Specialist should be able to let you know if this is Pudendal Neuralgia or Pudendal Nerve Entrapment. Please also google ' health organisation pudendal nerve' for information, on both conditions relating to diagnosis and treatment. Your Pudendal Nerve Specialist will need to take a history of when this condition started and what your symptoms are when it started and what they are now so just make a few brief notes. I wish you all the best. If you need any further advise or support we are here for you. xx

[Helphimnow in reply to Hidden]

We live in the UK too. We are amazed that you say the doctor administering the steroid can actually see the nerve. This is not our experiencing where my partner has been told it is very hard to get the right 'spot'. Three lots of steroids and pain blocks have not found it yet. Where about in the country are you please? We are in the south-east and are desperate

[Hidden in reply to Helphimnow]

I live in Lincolnshire. I like you have had a frustrating time over the last six years to find any Doctor who is knowledgeable about PNE. Please google ' Health Organisation.' Pudendal Neuralgia. Pudendal Nerve Entrapment Diagnosis and Treatment ' It gives information about the CT Guidance Diagnostic Procedure for pudendal neuralgia and pudendal nerve entrapment.

I would inquire at your local hospital by contacting ' PALS ' Patient Advise and Liason Service by email ( on the hospital web site ) to see if they could ask if there is a ' Peripheral Nerve Specialist ' at the hospital. Then if so email who ever they recommend and ask if they have any diagnostic tests for your condition. OR if they could recommend a specialist at your hospital that could investigate, diagnose and treat your symptoms.

I say email ' PALS ' to have a record of your inquiery and to ensure their response is helpful.

Please contact me again if you need further advise - I can only give you the benefit of my own experience and pitfalls to help you get on the right track.

All the best. XX

[Helphimnow in reply to Hidden]

Thank you so much for your promp reply. Are you female? My partner is male and apparently PN is rarer in men for obvious reasons. He is now virtually bedridden the pain is so excruciating. He has been admitted to hospital for several weeks this year and the treatment he received was bags of ice to put on his genitals and morphine. The pain blocks and steroids have not had any affect. The PN specialist at Canterbury will not try anything else as she says men who have had the op are in worse pain afterwards.

We are going to USA later this month for treatment. Fingers crossed it will be successful. Will let you know. With all good wishes and hope that your PN is under control and not ruining your life.

[Hidden in reply to Helphimnow]

Hi Helphimnow

I'm a male going through this also. Do you have a contact i can email you on? I've been going through hell with this...nobody has a clue! i live in the UK - berkshire

[Helphimnow in reply to Hidden]

Hi. My name is Jill and email [e-mail]..... I have been trying to get help for my partner for two years with no success. I agree that the medical profession haven't a clue of just how painful this condition is. On our return from USA in September I'll contact you and tell you the result.

Take care and I hope we can help.

[Hidden in reply to Helphimnow]

Hi - thank you!!

[Hidden in reply to Helphimnow]

I am female and after six years still undiagnosed. I am now contacting Neuro-physiology and Neuro-radiology at HRI and Lincoln as my local hospital say no diagnostic Neuro-physiology test available here.

They asked me to find this out myself, normally it would be expected of your GP to do this. I have emailed PALS at Hull Royal Infirmary.

I am sorry that your partner is suffering and even though admitted to hospital there was no diagnostic test for him. It is really appalling in this day and age. There are also restrictions due to my local CCG wanting to get diagnostic tests within my own NHS Trust.

The USA seems a long way to go for a diagnostic test when if your able and willing to pay for a private diagnostic test you can go to the Harley Street Clinic. Diagnostic Centre.16, Devonshire Street, London. email [e-mail]. ( you can google this )

There is also Doctor Panicker, Consultant Uro- neurologist at the National Hospital, Queens Square, London ( NHS ) who can do diagnostic tests.

When I went there I was not given the appropriate medical imaging to diagnose pudendal nerve entrapment but I hope this will not be repeated after my letter of complaint.

All the best. XX

[Helphimnow in reply to Hidden]

Hello again

Poor you. It is a never ending uphill struggle, which seems unbelievable in this day and age.

I did contact Harley Street but because of my partner's other health problems they seemed reluctant to see him.

He attends St Thomas's and they have suggested different tests. He is in so much pain he put himself in a catatonic trance to cope. This then progressed to encephalitis and after three days in ICU he was put on a medical ward. Again just left lying there as he was told he couldn't have pain management whilst ipan in patient. It's all been unbelievable hence we are using every penny we can raise to try and get help in the States.

[Hidden in reply to Helphimnow]

It is a shame to use your savings to go to the USA for a diagnosis. Why not while you are saving up at least get a referral to Consultant, Uro-neurologist Doctor Panicker, at the National Hospital for Neurology and neurosurgery, Queens Square, London. You would need a referral from your GP.

[Helphimnow in reply to Hidden]

Thank you for all the info. Everything is booked for USA so will try that route. If unsuccessful will follow you advice and get a referral to the hospital you suggest.

[Hidden in reply to Helphimnow]

I wish you all the best for the journey and hope your experience in the USA is much more helpful than in the UK.

All the best. XX

[Helphimnow in reply to Hidden]

Thank you so much x

[CoCofan in reply to Helphimnow]

There is a DR in Houston Tx that does surgery ...He had the problem..went to FRANCE for surgery...I have heard he has terrible bedside manner though..not very nice. ..I have this issue..myself. I did get an injection..guided by CT Scan..so they can see it.........It did create another issue down the back of my right leg..but did give me relief. I went to UT SOUTHWESTERN to Physiatrist specializing in Pelvic issues..Dr. Kelly Scott. You can also go to a URO-Gynocologists..specializing in this issue. I heard today ..also that there is a pulse device that can be attached to the nerve root.and implanted into to butt cheek...I heard about it in Austin Tx..I am sure theres more places. The Dr told me the trick is to get it done by someone who does it all the time...so the results turn out well. I use Lidocaine patches on that area..YES..right there....

[rjr1990]

I have been dealing with pain in my penis for over 12 years I was told there is nothing they can do for me are they wrong is there something that can be done I am desperate

[Hidden in reply to rjr1990]

Could you say which country you live in. Have you been seen by a uroneurologist or any other specialist for this condition. I am asking this so we can perhaps come up with some suggestions.

[rjr1990 in reply to Hidden]

I live in Oklahoma City and I have found no one to help me it's been a long 12 years it started when I was 35 I've been to neurologists urologists I've had fusion surgery I just want help

[Hidden in reply to rjr1990]

Hi, I have googled: Pudendal Nerve Specialist, Oklahoma City and received a list of Doctors specialising in Pudendal Nerve Entrapment on the website Pudendal Education in each state.

The Pudendal Nerve Specialist in Oklahoma City is:

Doctor Seyed Abbas Shobeiri

825 NE 10th Street

Oklahoma City

OK 73104

Telephone: ( 405 ) 271 9493

Telephone ( 405 ) 271 5239

I hope this Doctor can help you. I am afraid many of us have been seen by many specialists i.e. neurologist, uro-neurologists and like you they do not seem to know a lot about diagnosing this condition.

The only way to go is to a Pudendal Nerve Specialist.

Good Luck and I hope you get the treatment you need.

If not google the information: Pudendal Nerve Specialists, USA. There are quite a few states that have a Pudendal Nerve Specialist.

Contact us again if you need further advise or support. XX

[Okiegirl in reply to Hidden]

He is no longer there

[Hidden in reply to rjr1990]

There are the Beaumont Hospitals in Minnesota that you could look up Pain Management Specialists. They also integrate your care with other specialists to ensure you get a diagnosis and the right treatment. I wish we had hospitals like this in the UK... Just Google Beaumont Hospitals, USA

[jquintile]

You can join the National Vulvodynia Association for $45. They will then provide you with a list of doctors in your area who specialize in working with Pudendal Nerve problems......that's how I found several doctors in NJ.......still not better , but getting closer.....

[Dcutro]

Hi,

I'd search for a neuroradiologist at a major hospital as close to you as possible. That person should be able to refer to to a Gyn or urologist that also works with them on things like botox and nerve meds you try as the first line with pudendual nerve entrapment. You need to have the nerve block and try the nerve meds and continue the therapy with those doctors. That is what they will require for a year or more... just following a set of their protocol is best because is you need to be more invasive you don't want to wait too long but you don't want to go cutting to your body of they. An pull the ligaments away from the nerve and get it to calm down. They also wanted me to go to a special pain psychiatrist but they are two hours away so I found out about Healing Pelvic Pain. It was very helpful and led me on a journey about understand more about how my mind has also assisted in this so once the nerve starts firing you need a little more help. I was very into cycling in college and then I could go on so it's physical made sense too. Many don't have a connection why it fires. Hope it helps...

[Hidden in reply to Dcutro]

Did you ever go to a sports injury specialist? I think this therapy could help you.

[phyllyz in reply to Dcutro]

Which types of doctor can pull the nerves off the prudendal nerve I don't want cutting my nerves if they don't need too.

[Blondbeauty29]

What are the symptoms of that? I have on and off right low Pelvic pain comes every third month not sure if it's cyclical or what going to primary Thur 😢Ultrasound and x ray normal showed functional cyst when I pee it feels a little strained and low back pain aches and pains down back both legs

[Susan1-2]

Dr Dellon Maryland, check my bio