Health Organization for Pudendal Education

Hello everyone,

I've been having constant symptoms for the past two months and think it might be due to PN. About a year and a half ago I had a pregnancy loss followed by a D&E. After the surgery I had some fullness in the pelvic area and noticed that I had a stronger urge to go, but no change in frequency and nothing too bothersome so attributed it all to the surgery. In June I started bicycling. Only got out a few times, but a couple of times I was really pushing myself. Around August I noticed a full feeling in my pelvis and kind of a dragging feeling. In October I noticed some discomfort in my bum/tail bone area and thought I needed a new office chair. I got the new chair and my symptoms disappeared for a couple of weeks. Then one day they returned with a vengence and have persisted since then. They seem to change daily and I never know how or what I am going to feel on a day-to-day basis. My symptoms include the following:

-Feel like I am sitting on a ball/rectal pressure almost every day, but some days are worse than others. It is the worst at work when I am sitting and not as bad when I am sitting on my sofa at home.

-occasional bladder discomfort in the morning

-occasional pins and needle/lightning bolt feeling in the genital area

-occasional restless legs feeling

-occasional hip/thigh/leg pain

-rectal itch

-occasional low back pain

I have seen my ob/gyn and GP and both have told me I'm fine, although a couple of the symptoms are new since I've seen them. I know that something isn't right and I'm not sure what my next steps should be. Do I find a new GP? Schedule with a colorectal doctor to check for cancer? See someone about nerve or muscle issues? I'm not in a great deal of pain, just discomfort and the anxiety is the worst. What is wrong with me??? Does this sound like it might be a PN issue? Any advise would be greatly appreciated! Thank you!!!

Hi, and welcome to the forum. I am a "newbie" myself, but have done a lot of reading on the subject. Your symptoms of feeling the tennis ball feeling in the perineum, and having it been caused by bike riding strongly suggests a pudendal nerve problem. There are three branches from the pudendal nerve: rectal, perineum, and bladder. You seem to have symptoms in all three branches, as I do. My symptoms vary depending on how much I sit during the day, perhaps the same is happening to you. I will get a "zinger" occasionally in my perineum too. I now avoid all activites, lifting, stretching, squating (no squatting!!!!), sitting, bike riding, running, etc. You need to do the same. Take it easy for awhile and when you have to sit, sit on cushions that have a cut-out to take pressure off your perineum. See if it gets better with these things. The rectal itch can also be due to pudendal.

This is not a "fun" condition to have, as so few doctors know about it, and surgical approaches to "fix" it have only been around 10-15 years.

Remember that despite feeling alone, you are not alone. Many others are in the same condition you are. We learn to manage the best we can, and then if symptoms persist despite self-care and therapeutic injections, then the decision for surgery can be made. If it comes to that, research that carefully. In the meantime, do whatever you can do to help yourself by not aggravating the nerve further. Get a cushion to sit on, and see how you do. Also, start researching a doctor near your location who can give you good advice.

The earlier one diagnoses the condition, the better the chance for complete recovery. It sounds like you got on the ball quickly, so there is definitely reason to hope and not despair.

I wish you all the best that life can bring, even one with pudendal issues. I am living my life (carefully) with pudendal nerualgia, and am making a plan if therapy fails. That is all one can do.

kone

VP, I am so sorry about your pregnancy loss.

I think some of your symptoms sound like they might resolve with pelvic floor physical therapy, maybe even some core strengthening to help see if that will affect your back pain. In the meantime for the anxiety, see if someone can give you even a low dose of Valium to help with anxiety; those feelings can enhance the sensation of pain. Both the PT and the meds are something you should try early on to see what reduction in symptoms if any you can get. It will help rule out or rule in PNE, which is a diagnosis of exclusion.

I wish you better days, VERY soon.

Thank you for responding. I will definitely take your advice to see if it helps things. I now see how bad this could be from reading the posts here. I made an appointment with a GI doctor just to rule out anything in that area, but I can't get in until February so I guess it's uncertainty and discomfort until then. I actually feel a bit better today. Is it normal for symptoms and the severity of symptoms to change so rapidly from day to day?

Yes, many PN patients have fluctuating symptoms with good and bad days. I agree with Celeste that you might be wise to get a good PT to evaluate your situation -- one who is trained especially in pudendal neuralgia so they won't do more harm than good.

Wishing you the best,

Violet

Dear VP2050,

I'm new here too and wanted to let you know that I feel for your situation. Your symptoms very closely mirror my own. After a fateful bike ride in late September, I felt tingling in my privates. That subsided and was replaced by a constant feeling of pressure in the anus - like I always had to have a BM, even right after having one. I was convinced I bruised or enflamed my prostate and pursued that course for two months. When that yielded no relief, I moved on to the GI doc --> colonoscoy, check! It wasn't until a "random, let's just see what the neurologist thinks" appointment a week ago that I learned my issue could be PN. I'm staying off my bum now and lying in a position that doesn't make the downstairs go numb overnight (yeah, that's no picnic). I have an MRI this week and a few more comfirmatory tests to be sure this is what is going on. Like you, I have good days and some very bad ones (nights, moreso).

If you're concerned, and it seems that you are - get that Neurology visit asap. Meantime, take steps to limit putting pressure on your backside and as others have shared, start working on stretching your pelvic floor. There are many yoga sites with easy to follow instructions; even the Livestrong.com site has a few that are helping me.

You're right, the anxiety is exascerbating things. I finally got an Ambien prescription so I can get some sleep at night while I work to improve things. BELIEVE YOURSELF and listen to your body. Nothing hit home more than your statement that you knew something wasn't right. Your body is talking to you. And yes, be grateful (I am) your symptoms don't seem as severe as so many on this site. Best of luck, feel free to send a PM if you wish to discuss more - and keep us posted!

Warmly,
Matt

Thanks for your response Matt. It is nice to know that I am not alone, though I wouldn't wish this on anyone. You are right about our bodies talking to us. I know that I used to feel normal and now I don't. Every day is something different and off from what is normal for me. We need to be our own advocates. I would hate to put things off and hope they get better and have things become more serious. Not knowing is the worst part and the waiting! That's what we get for trying to exercise! I was a new biker and now I don't want to ever get on that thing again.