Coping with feelings of sexual stimulation in front of family/friends/at work...

This has been the hardest and most distressing part of living with pelvic/pudendal nerve problems.

Experiencing feelings of sexual stimulation (which, hopefully, are normally experienced in comfortable situations when desired and initiated) in environments where it feels inappropriate, has been a humiliating, distracting and distressing part of this condition.

I'm struggling to work out the best ways of coping when this happens, as it feels like I've tried most things I can think of. I've attempted avoidance/isolating myself; I've tried taking control of situations and conversations with way too much energy; I've often drunk too heavily prior to social situations; I've tried to distract myself while in the presence of others - to the extent it seems like I don't even care what other people are saying...the list is really endless.

I've categorically ruled-out the approach of "being in the moment" or "going with it" when these unwanted sensations occur. I appreciate this can otherwise be a healthy emotional attitude with many things in life, but why would anyone want to be fully experiencing unwanted feelings of sexual stimulation in front of friends, relatives or work colleagues...? Get real: the preservation of dignity and self-respect must surely always be a priority.

I often wonder if this condition isn't the ultimate confrontation between mind, body and soul...

I would be interested and grateful if anyone has any advice on dealing with these kinds of feelings and experiences. Or even any general thoughts relating to this...

To give you some background, I'm a relatively young male who's had these symptoms for around 6 years, though I'm hoping my question will resonate with men and women of all ages.

[Patspart]

This was, for me, the worst part of having pudendal nerve entrapment. It is like losing control of your body. As a woman, I have found that lidocaine cream really helps, I use it every day and it numbs the area. Please fell encouraged that you are not alone in this, there are many of us who suffer with this. Have you asked your doctor about treatment options? I have had the PNE surgery, and my arousal symptoms have improved. Best wishes for you to find answers.

[Hidden in reply to Patspart]

Thanks for the supportive reply. Yes, it really is like losing control of your body.

I've also tried Vagisil (Lidocaine) and Lanacane (Benzocaine) creams but not with much effect. I think the only way for me is to solve whatever internal irritation or entrapment is occurring.

Do you mind me asking how your pudendal nerve entrapment was diagnosed, where the entrapment was and where you had the surgery?

Thank you.

[Patspart in reply to Hidden]

I had PNE surgery 3 months ago. I flew to Houston to have it done. I first met with another Neurologist who did the tests for PNE. (Very painful) I tested positive and moved on to see the surgeon. After having the surgery,Dr. Ansell ,the neurosurgeon, told me that the pain would come back several weeks after the surgery, but then I would slowly get better over a year's time. Here is my original first post on this site that explains everything...(Also, you should look at Dr. Prologo at Emory Univ. who has developed a new technique of freezing the nerve and had great success. Also, a device that is surgically implanted in your spine for pain and other symptoms)

I am currently in my fifth day of recovery from having PNE surgery in Houston, TX by Dr. Lee Ansell. All I can say is this team works SO hard to take care of you individual issues... whether it be insurance, other illnesses etc. My pudendal nerve was twisted around the two pelvic ligaments and pulled very tight. I had spent over two years on the couch, trying to convince my doctors at home that I had this disorder. My surgery was especially challenging because I have adrenal insufficiency, and having surgery is very dangerous with this disease. Dr. Ansell's incredible assistant, Terry, found an Endocrinologist who would see me and write a protocol for the surgery (lots of steroids!). The hospital was like a high end hotel, with beautiful rooms and great nursing care. Dr. Ansell has gone to great lengths to prevent infection, so I was exposed to the latest in infection preventing equipment.

For the last six months, I have been unable to empty my bladder, suffering from urine retention and difficulty going at all. This is GONE. My pain level is already better than it was prior to surgery, and I am back on my regular pain meds... nothing extra for the surgical pain. I am staying with family, and they said that I look 10 years younger because I am not in so much pain.

At the time I had my surgery, my husband had basically taken over all household duties. I could no longer sit to do anything. He brought my meals cut up into small pieces so I could eat lying down. I only got up when I absolutely had to. I have a great Internist who introduced a pain medicine called Nucynta. It does not have the addictive side affects of regular narcotics. It also doesn't build up in your system so you have to take more and more, AND it just causes me a little grogginess. Other pain meds had changed my personality! I supplement with Tramadol during the day.

I was in a state where surgery was not an option, I had to have it done because my life was not livable. However, what truly helped me the most was a positive attitude. It isn't easy when you are in so much pain, but accepting your medical condition and refusing to allow negative thoughts in help with relaxation and reduces pain. I will never give up the fact that there is a plan for my life, maybe not the plan I had decided upon, but I just refuse to give up hope. Focus on gratitude, and keep a "what I am thankful for" notebook. I know that if this surgery isn't successful, there will be more strides made with this disease in the future!

[Hidden]

Thanks for sharing your story. I really hope you're happy with the outcome of the surgery.

You're right about trying to stay positive.

What were the painful diagnostic tests you had? And where exactly were the pudendal nerves entrapped?

[Cheryl37]

Would medications that suppress sexual feelings as a side effect help? I know that most antidepressants cause lack of sexual feelings and desire. Just a thought.

[Hidden in reply to Cheryl37]

Thanks, I already take a small amount of the antidepressant Citalopram and there would be room to increase it, which would be something to consider in the meantime until the cause of the issue can be isolated. I no longer have any sensation in the penis from whatever nerve damage or compression has occured, so a medication-induced castration would, I suppose, be a plus given the situation.

[Sandgrounder68]

Hi Socirul, I'm suffering from groin pain on and off for the last 13 years. I've been reading recently a lot about the pelvic pain as doctors have not been too helpful. In the book I'm reading, 'Pelvic Pain Explained', I came across Persistent Genital Arouser Disorder. Have you heard about it? The treatments include PT, TENS treatment, hypnotherapy, hormonal regulations, pudential nerve blocks, sympathetic nerve blocks, Botox, and neuromodulations. The text specifies women but the disorder is for men as well.