Pudendal Nerve Nightmare: I've had my P... - Pelvic Pain Suppo...

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Pudendal Nerve Nightmare

Dandyl profile image

I've had my P nerve for over three years.

Burning up my bum, sometimes the feeling to wee all the time but I don't need too. Numbness in my butt cheek. Pain so bad up my bum it's like hitting your thumb with a hammer.

Flare ups can last and be so painful.

All I get is tablet's and more tablet's never answers what is causing this life changing torture.

Can anybody relate to this.

14 Replies

I’m so sorry you’re suffering with this. I completely understand. If your pain is being caused by irritated pudendal nerves, there are some things to try that are drug free. A pelvic pain specialist would be my first recommendation. Also you can go online and watch videos on how to do abdominal breathing. That helped me so much and so still do it daily. I feel much better but still have some issues in the area.

Diet plays a huge role in my problem. The rectal/ anal tissue is sensitive to what I eat for some reason. I have to avoid many things. A partial list would be chocolate, acidic foods like tomato proxy’s and oranges, oats (tiny bit in a cookie is ok), all fruit except pears and red delicious apples and sometimes bananas, most veggies and caffeine. I limit dairy also and high fiber foods.

You can try spraying a little water on your toilet tissue when you wipe then gently pat dry with a soft cotton cloth. You can gently pat a bit of pure aloe on there afterward and before bed.

Don’t give up, keep doing research and hopefully you’ll find some things that help you manage this awful condition.

Best,

Andilynn

Dandyl profile image
Dandyl in reply to Andilynn

Thank you so much for finding the time to reply. I will look at my food intake. I never thought maybe some certain foods can make the condition worse.Also I will look on line for exercises I've tried ones before but still no joy.

Words cannot describe the pain and the day to day living with it. I just feel the doctors are blinded by this and don't do enough to help us.

It's answers I need. My body is in pain why??

Tablets only mask the problem.

But still nothing is done.

I hope there is an answer out there.

Are you still in alot of pain or has it settled down . I'm always hoping to hear that it can go away.

Thank you again .

Andilynn profile image
Andilynn in reply to Dandyl

I am so much better than I was even six months ago. I can’t do any exercise (definitely no kegel type exercises) without stirring things up. Abdominal breathing sessions multiple times daily and watching my diet have gotten me out of pain. I have some skin irritation down there sometimes if I eat the “wrong” thing, but oftentimes I’m completely pain free. My only exercise is walking. I try to do it 20 -30 minutes every day.

Yes I've had it for two and a half years but getting better I did do pelvic floor PT which helped a lot and diaphragmic breathing every single day and stretching everything single day also yes I cut out dairy and I avoid acidic foods but you can get relief from Walgreens which means you can eat some acidic foods if you take those pills which take the acid out of the food... also I get pH protector drops from Swanson's vitamins online and I can drink coffee or wine if I put some of those drops in because it alkalines everything... I did find low dose muscle relaxers helpful and you can get them into suppositories also when I was at my worst low dose gabapentin at night help me and I think it just takes time and being diligent about everything you do to help it

Dandyl profile image
Dandyl in reply to kalecolbe12

Thanks for that. I will look into what I eat as I comfort eat and that means not much healthy food.I thought of putting something up my bottom to help relieve the pain.

I always want to put my fingers up to shift the pain.

Do you get burning up the bottom?

Do you have high blood pressure?

I do and it was since this happened.

Do you feel we can get better completely? I'm so worried if this is it.

Thank you for replying and helping.

I'm so happy you are mostly pain free.Walking sometimes for me makes it worse. I will try what you have suggested and keep hoping one day this will end. Thank you again.

Best wishes

Dandyl

Bij mij heeft voedsel geen enkele invloed spiergerelateerde oefeningen ook niet omdat de zenuw blijvend beschadigd is. Ik heb wel pt maar meer om goed te kunnen ontspannen en andere spieren te blijven gebruiken . Bij mij helpt oxycodon iets en ptns behandeling iets. Verder vermijd ik ten alle tijden zitten. Sinds ik niet meer zit sinds 2016 ben ik erg veel vooruit gegaan . Ik lig en zit enkel op mijn knieeen op een yoga bench met plank met gat ( zie foto )

Sorry to hear you have become one of us - its a tough condition to diagnose and treat but there is hope. Physical therapy saved me - also I suggest you read this book "A Headache in the Pelvis" - pretty sure you can find it on Amazon. Here is a website with lots of info to include doc's and PT's that can help: pudendalhope.info/ Don't be discouraged as there are people out there that can help you. Good luck!

Dandyl profile image
Dandyl in reply to RobertVerde

Thank you for your reply and input.I will read the book and look on the website.

I'm shocked there is so many people out there with this horrible torturous condition.

I never heard of it before until I got it.

Even my doctor is not helpful.

Thank you again.

RobertVerde profile image
RobertVerde in reply to Dandyl

No one hears about it until they have it - I went to a dozen docs before I found one that understood the problem. Once you have an understanding of it you can treat it. The book made me realize I wasn't alone.

Dandyl profile image
Dandyl in reply to RobertVerde

I hope one day I can sound more positive like yourself.It's a dreadful feeling thinking your never getting better.

I'm glad I am not alone but that's not nice for the others.

It's good to know how others cope and find a way to understand and get some painless days.

Thanks again I appreciate it.

RobertVerde profile image
RobertVerde in reply to Dandyl

I still have it - but its manageable - I go to PT once a month now for a tune up - in between I do my own PT which keeps it in check. In the beginning there were many dark days and nights where I didn't think I could bear it much longer. Pain was excruciating with no end in sight. Remembering that time I am pretty careful about what I do - I NEVER want to get back to that again! Be diligent and you will heal and learn how to self treat the condition.

I can relate. For me it began March 2020 after prostate surgery. I thought that my life would be very sedentary because of the pain. Even a little walking gave me intense pain in my rectum and in my penis.

In July i began physical therapy and about 2 months later I was able to control the pain. I do about 15 minutes of yoga to start the day and do some throughout the day. Now I occasionally get the rectum pins and pinches to remind it’s still lurking. But I am so much better.

You must get PT.

Hi try Xanax and trileptal taking at the same time . You have to find the correct dosis for you 🙏🏽

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