Need help, desperately. Pudendal Nerve.

Hello TMS forums. Let me share with you my story.

I'm 21 years old, from Argentina.

7 months ago, I had unprotected sex with a girl, who is my girlfriend now. Two days after this, symptoms of a firstly suspected STD started. Urinary urgency, stinging in penis, some pain when the penis was getting erected. At the very same time I was about to start my first job as a professional motion designer, but I wasn't stressed about it.

Suspecting a UTI, started taking antibiotics by my own. Nothing changed. Anxiety and fear started to kick in. I have chlamydia? Gonorrhea?. Obsessive google symptom searching began. I didn't have medical insurance so at the moment and I didn't know nothing about going to doctors by my own. I'm the kind of person that doesn't ask for help or share his problems to anyone, until it blows up or I'm in severe problems. Symptoms worsened and new ones appeared, in conjunction with my increased stress,fear and anxiety of didn't know what was happening. At some point the pain in my perineum was so bad that It hurt even from walking.

In completely urgency and desperation mode, I asked my dad to go to a urologist friend of him. His words were that I had no bacterial prostatitis, that everything was in my mind and things will heal on it's own. Happy to hear this words, I left with optimism that lasted for a couple of days. The cycle of obsessing and stress started again. How can symptoms this bad and real BE NOTHING?. I must have something. Doctor didn't even told me to do tests.

On my own, I went to a different (and expensive) doctor who also suspected that I had prostatitis. This one checked manually my prostate and told me to do several STD tests, for every kind of bacteria and disease, which all came by with negative results. His diagnosis was no bacterial prostatitis and recommended to start PT. Now with real tests results that told me that I actually had nothing STD related, my mind relaxed, but only for a while. I started to think (after investigating on internet, of course) that I may have a hidden bacteria that was undetectable and also discovered pudendal nerve entrapment, which I didn't pay much attention because my symptoms started after sex.

During all of this, I talked to my girlfriend and she told me that she was completely clean and had been tested very recently before having sex with me.

Decided to start PT, whose told me that I had a very thigh pelvic floor ,and that my problem was muscular (i'm a very fit guy that is into bodybuilding). After not experiencing any kind of relief after 6 sessions, I stopped visiting her.

At this point I was completely alone, no one understood what was happening to my and how much i't was ruining my life. Like, why no one couldn't find what was wrong with me?. I should be having amazing sex without pain at my age!.

Here started the self treatment part for several months. Tried supplements, diet, stretching, antibiotics by my own, anti fungals, creams, massages, not going to the gym. NOTHING at all changed ANY of my symptoms. I didn't have any sense at all. I didn't know what triggered my symptoms beside anxiety and nervousness. I didn't understand at all why it was worse some days, and better in others, I was completely loosing my mind. In this stage, I ditched the "hidden bacteria" theory and i was for sure that i was muscular and pudendal nerve related, since it made sense because i go to the gym a lot, i don't stretch at all, and i had very rough sex with my girlfriend.

I ended up in the pudendal nerve hope forums, reading terrible horror stories. My symptoms shifted. The pain in the perineum went to the inner groin, just to the left, right in the nerve. All the others symptoms stayed the same.

My hopes were absolutely destroyed. I cried several times because this coulnd't be happening to me, and i didn't even know what was going on.

After reading some success stories of people that healed after "not paying attention to it, and just ignoring" I decided to do the same, ditch every single thing that i was trying,ignore the pain ,hit the gim without any worries and and just hope for the best, but my frame was the very same as always. "to try something". I was trying to not think about it but i was thinking about it at the same time.

Had some good days when i was in a good mental state, but symptoms were always there in a certain degree. Never had a symptom free day since the first day that this started.

Recently I've discovered the TMS term, that it gets really close to the "don't pay attention to the pain" theory.
But it's extremely hard to ACCEPT that I don't have nothing with symptoms SO REAL, and that are there EVERY SINGLE DAY, DURING ALL DAY.

The only thing that healed and showed me that this may be TMS is that, when I ditched the cream i was using on my penis for the redness,tenderness and spots, these symptoms disappeared in the next days.

What can I do to accept this? I have some days when my mental state is all about "i don't have nothing, you already tested for everything, you can train, you can have sex, it's not impeding nothing on your life" but this lasts shortly, and again, I start to think that it may be a hernia, and start to check myself, watch my penis, touch my nerve if it hurts, etcetera.

As a person, I'm REALLY obsessive,perfectionist and paranoid when something related to my health happens. I always get side effects from medications just by reading them. I google my symptoms, and fear of the worse. When i'm injured or sick, i become really obsessive with trying to heal everything in order to continue with my life. For example,I took Accutane two years ago and side effects are living with me after all those years. During accutane I read every single side effect related horror story and became extremely paranoid with any side effect that i suffered.

I'm also very anxious with anything sex related. I pressure my self to be "the best" when having sex with a girl. I get really nervous about not being able to hold an erection,not satisfying the girl and even to put a condom. All of these happened that first time when everything started.

In conclusion, what should I do? I'm trying to digest the TMS approach but it's getting really hard to accept it. I can't ignore my symptoms, especially the urinary urgency because it's always there.

I haven't read any TMS related book. I would appreciate some advise.

Thanks a lot.

 

I went through the exact situation to you, pretty much at the same age as you too. It is a horrible place to have pain! I felt like my balls were in a vice and had hot poker up my ass!

I also have a very similiar personality to you; The drug side effect thing i can relate to to a tee. I can literally read a symptom and it shows up 20 minutes later haha! Went through the whole accutane ordeal too!

I ended up having hernia surgery thinking that was what was causing the pain, but it only made it worse! There are so many deep muscles in the pelvis intertwined with so many nerves which can cause so many strange symptoms, it is very frustrating.

First thing is first - get THE MIND BODY PRESCRIPTION book and get reading! Address the stressors in your life, make a list of them, write about them. Ditch the weights for a while or at least give yourself a bit of a deload if you are consistently maxing out lifts and just chuck your headphones in, crank some tunes and walk, jog, stretch; Try not to focus so much on "working" your muscles but more just relaxing your body and your mind, let your body do what it was suppose to do while you work on the emotional side of it, don't let your anxiety and fears feed it!( Easier said than done i know!)

Message me if you want any more advice or just a chat, it is hard to find information on this kind of thing but trust me, this will NOT last forever and will all be a distant memory soon enough.

 

My pain started off with a false positive on a STD test, then it progressed to a diagnosis of non-bacterial prostatitis, followed by physical therapy, followed by going to the pudendal hope forums. I had constant pain, UTI-like symptoms at first, urinary urgency, etc.

Sounds like we had very similar paths. If it gives you any hope, I was able to recover along with many others here.

If there's any advice I could give you, it'd be to try your best to stay calm and also to start an evidence list of every piece of evidence that indicates your pain is TMS and not physically based. It took me a while to believe my pelvic pain was TMS, but eventually, the pain slipped up, and I caught the pain shifting to my feet one day. The pudendal nerve doesn't go to your feet, of course, and at that point, I had no more doubt that I had TMS.

Feel free to message me if you have any questions. Pelvic pain can be rough, but there's lots of us here who have recovered from situations very like yours, myself included. The TMS road takes patience though, which I know is hard, especially when you're in pain. But there is hope. Hang in there, be kind to yourself, and try your very best to relax. The intense anxiety and fear you're feeling will fuel your pain. One key part to TMS is fighting the cycle of fearful and anxious emotion that can perpetuate the pain cycle. If you haven't already, I'd recommend checking out Alan Gordon's Pain Recovery Program on the TMSWiki site. It's a great place to start.

 

Thanks for all the great advice. It's so nice to found people that succeed in healing pelvic pain, even more people that went through the very same situations. I feel supported and it's a great feeling.

Indeed, i'm pretty sure that my obsessive personality caused this and not a past trauma. I've had neurophaties in the past such as ulnar nerve irritation where I obsessed about it trying to heal it and healed when I stopped treating it, and now that I remember, i had not to long ago,pain in the same inner groin spot where now pelvic pain originates, while walking.

Going to the gym is one of the things that helps me the most. I get distracted, my mind is on training and there is some nice people in there, but you're right. I think that I should change my frame and thinking about training. I have to ditch that obsessive thought of "training for looking good and better than others", I need to change the " I have to be the very best in everything, from sex to fitness"

About symptoms shifting, I've experienced that but not so notoriously as the pain moving to my feet or some completely different body part. When I was reading about prostatitis, I definitely felt the pain on my prostate. Exercises that involved sitting made my perineum hurt badly. When I switched into reading about pudendal nerve , the pain in the prostate moved to the left inner groin/glute.

As I said, pain doesn't make sense at all. If I had pudendal nerve entrapment, I'm SURE that i woulnd't be able to lift weights 5 times per week right? And also, why sitting doesn't worsen my symptoms anymore? Why squatting doesn't makes me scream in pain? Why, for no reason or cause at all, pain is some days better,then it get worse, and viceversa, why my butock goes numb when that is sciatica related and not pudendal related but at the same time, why stretching on my left leg hurts like if there is something wrong?. I can definitely feel that there is something tight that hurts when stretching.

It's just a load of no sense and i'm tired of looking for answers,trying stuff, being sad about not working and thinking that this is permanent. I'm gonna buy and read sarno's book as soon as possible, and also check Alan's program.

I will do my best to ignore my urinary urgency and erection pain, as impossible this sounds for me because they are always there but I will not dwell on the pain. I need to keep a good mindset.

 

You defineitly are on the right track, I think you’ll find the book really puts it all together for you.

So much of what you just said is covered in just the first few chapters.

You can also get the audio book through amazon of you’d prefer that too, I have both. I’ll have a flare up of something random every now n then and i re-read it.

 

Thanks a lot for the help, it means a lot to me because I fell that i'm stuck in the dark by myself without knowing why, now i'm starting to see hope.

 

I have PN, it all started with multiple UTIs, which led to bladder pain syndrome, and the sensitivity in my pelvis spread to the this current PN nightmare.

Since learning TMS, i've gotten both happy and sad. Sad that i cant just "fix" it with a pill or shot. However, if you go on those pudendal forums, you'll see nothing but dispair. Nobody is cured! However, in this forum, people have overcome their pelvic pain.

iv'e done a number of things. Go back and read my first post and see how i learned i had TMS, and some of things i did. The obsessing about "what is wrong" is the worst. I've done this. i've been a hypochondriac all my life, and even before the pelvic pain, i used to give myself symptoms just by obsessing about them.

http://www.tmswiki.org/forum/threads/pelvic-pain-scared-of-the-pain.16450/ (Pelvic pain, scared of the pain!)

supposedly weightbearing squats are not good for PN, so i would say, please keep up with the exercise, but no need to do anything that strains the pelvic floor. Another bad thing to do, is live in a bubble. The more you live in fear, the more you will create associations with activity. I got back into mountain biking, despite doctors telling me never to sit on a bike again. I was able to do it by not "fearing nerve damage".

 

I am going through the exact same thing as you are, Literally. Our stories are exactly the same, and no doctor manages to find what's wrong with me. Have you managed to made any progress? I really need help here, this pain is really not going away.

 

Hey man I really would like to talk to you, you are the first person I have found that has gone exactly what I have gone through, like literally. I thought I was the only one in this world with this messed up story. Please message me if you can, I want to know if you have managed to find an answer to all of this because I truly am in a horrible place.

 

I may have the same symptoms, I started when I thought I caught HIV (any family member got cancer diagnosis). I now know how to relax the pubic bone muscles (using a physical therapist) that enabled me to prevent balanitis to a great extend. Still some issues in the perianal area.

 

Hello there.

After 6 years, I unfortunately have to share that I'm in the same situation, and I would say, even worse now.

I'm very close to giving up to pain and not wanting to try anything else. I've been defeated relentlessly these last 6 years with expectations and hope. Nothing never worked in the sightless. Couple mounths ago I decided that I was going to beat this and decided to treat myself with PT: leg work at the gym and lots of stretching. Pain kept increasing but I still decided to push it pretending that there was some kind of reward at the end with doing this.

I have pushed it too far now, to the point where I'm discovering new pains levels. I do not understand if I pulled something, If I broke something, or if I teared something. Nobody knows. I don't know. I just have fear and confusion, and there's no one around that can help me out.

I'll be using my last bullet on a lumbosacral MRI next week, to see if something is going on in my spine and nerves, because my head can not grasp the idea of a pain so intense being completely caused by my head, when I still have imagining to be done.

If the MRI is completely clear, that will be my turning point. I'll give up to pain and just stop looking for answers. I have spent too much time on this and suffered too much at such a young age. But I still need proof that I don't have anything before doing so.

Sorry for such a disheartened message, but the pain is too much right now. I feel defeated.

 

Hello @JanAtheCPA , nice to meet you and thanks for taking the time to write such a detailed response. I was on a very low point at the time I wrote my previous response.

I received my lumbar MRI and Scrotum, Inguinal, and glute ultrasound results. As you might guess, they all came back clean. There is no sign of major issues that could be the cause of my pain.
Over these 8 years I have had: Pelvic MRI, Lumbar MRI, Hips MRI, X-rays, Ultrasounds on the body parts I mentioned, pudendal nerve infiltration, and PT. Every possible STD checkings, blood tests, and prostate checks.
I also had surgery for 'the only thing I ever found' that was a labral tear on my left hip, which solved the hip clicking and locking that I had there but had no effect on my pelvic pain.

After all these years, I think that is time to accept that I don't have anything physically wrong that is causing my pain and stop searching for a needle in a haystack. I finally feel that I'm ready to begin my TMS journey and start my journey to healing.

 

Hello @rumble1445
Here is a little something to help you on your journey, the first steps to healing begin with reading a book Dr. Sarno. There is much to digest that will help you understand the journaling process from what he has written. There is also a LOT of great information on this website's front page:


Feel free to explore more of this website at https://www.tmswiki.org/ (The Tension Myositis Syndrome Wiki)

This website is inspired by the ideas of Dr. John E Sarno who’s pioneering work in the field of TMS has led to many scientific discoveries about the human chronic pain experience. We suggest you begin to learn more about TMS by reading one of his books. Here is a short biography and bibliography of his life work. https://www.tmswiki.org/ppd/John_E._Sarno,_MD (John E. Sarno, MD)

Not sure if your chronic pain is mind body related? This free, short quiz from the PPD Association (PPD is another term for TMS) can help you gain a clearer vision of your chronic pain. https://ppdassociation.org/ppd-self-questionnaire (Self Quiz — Psychophysiologic Disorders Association)

The ACE’s test is a short questionnaire to help you recognize how your early life many be affecting your current life and stress. Take this test by imaging yourself as being a child. How did the actions of others in your family effect you as a child? https://www.tmswiki.org/forum/attachments/aces-quiz-pdf.1558/

Good luck!