Extreme Pelvic Pain - TMS or should I keep searching for answers?

Hello,

Amir here from LA.

I'd like to share my story in hopes that someone can shed some insight or help steer me in the right direction:

My PN pain started about 8 months ago- a slight tingle/itch sensation in my urethra.

Before I get into the details of how the pain worsened, a bit of a backstory-- I'm 25 and I have kyphosis (about 70 degree curvature now, but started in my teens) and so I started somking pot for pain years ago. Over time, I became depressed (both from the weed and from life stressors), and started taking Lexapro. I hated the side effects, but it numbed me emotionally, so I stayed on it for a few months and then eventually just stopped it. About a year later during a really intense emotional period, I started taking my old (maybe expired) stash of Lexapro and immediately started having intense paranoia, anxiety, etc. I impulsively stopped taking it again cold turkey b/c of the intense side effects (big mistake) a few weeks later and within a couple days I was totally manic. Before the Lexapro, my depression could get pretty bad, but I was generally very calm, functional, and did very well in school and at work. During the mania I was totally delusional, spending thousands of dollars, stopped sleeping, hypersexual, I even thought God was talking to me at one point, intense panic attacks, etc. (at the time I was so lost in the psychosis I had no idea anything was wrong with me). While I was manic, I rear ended someone and there was intense whiplash, but I felt no pain after (and thank god the other person who I hit was ok).

Eventually my parents intervened and took me to a psychiatrist who put me on a ton of pills at once (I was totally manic and unable to make a rational decision about the meds, and my dad, not informed about medication, forced me to take them all)-- lithium, respridone, olanzapine, klonopin, gabapentine, etc...

I came out of the mania and realized that I had a psychosis (which was totally overwhelming, it was like waking up from a crazy month long dream/nightmare). I stopped smoking pot, however the meds made me extremely ill. I was throwing up constantly, shaking uncontrollably, and just had a general constant feeling of uneasiness and anxiety. Like I wanted to crawl out of my skin my tremor/akathisia was so bad. I went to another psychiatrist who said it was mad that I was put on so many medications (and she also hesitated to diagnose me as bipolar-- she thinks I just had an awful reaction to the antidepressant), so she slowly took me off the meds and left me on just an anti-anxiety medication and later just a small dose of an antipsychotic because I was still having trouble sleeping and racy thoughts.

I stabilized almost fully (this is a few months ago), started sleeping, and only had some racy thoughts in the morning. I even started driving again, seeing friends and family, quit cigarettes, etc. I felt I was totally on the right path and on my way to recovery. But it was around a month into this time period that I started getting extreme back pain again in my kyphosis area (thoracic) and then stared feeling rapidly increasing pain in my penis.

I went to a urologist who ran every test imaginable, all negative. (Side note; I had an infection about a year and a half ago before I got mentally sick, but I was given antibiotics and everything went away). I had a digital rectal prostate exam, cystoscopy, etc, all clear. I was put on antibiotics for 30 days but the pain persisted (and worsened after the cysto).

I then went to physical therapy with Stephanie Predergast who diasgnosed me with PN, but after seven sessions no improvement. I tried Elavil and Lyrica for a month, but didn't help at all and struggled with side effects so eventually weened off them. I then met with Dr. Sheldon Jordan, who diagnosed me with PNE, and suggested a nerve block. At this point my pain was a constant 7/10 and mostly at the tip of my penis (but also some burning in general in the penis). I was starting to feel really desperate and suicidal so I went for it. It reduced my pain to a 4 immediately after (pudendal and sympathetic nerve block), but I was left with that weird awful foreign body sensation like something was stuck or pulling inside my urethra.

Within a day, all my pain returned, and then I started having extreme sitting pain (burning and spasms in my butt cheeks) and eventually burning in around my entire pelvic area. I can still get an erection, but orgasm doesn't feel the same/shurts, and I have very frequent and sometimes burning urination. It literally feels like there's a knife stuck and being pulled in and out of my penis all day long.

At this point my pain is at a constant 9/10 and I'm struggling to find an answer. The only physical problems I suspect that could be related is my kyphosis, which has led to a few herniated discs (a particularly bad one at T9/T10), and haven't found anything glaring in the pelvic region yet. I also have congential cataracts in both eyes, and in the last two months I've developed floaters in my right eye where I had cataracts surgery about 10 years ago, so lately I've been thinking if I should do genetic testing for a potentional metabolic disorder or maybe something autoimmune (Dr. Jordan also did an FMRI and suggested that parts of my brain were "underdeveloped" and that I could have something genetic going on, however I've had a structural MRI of my brain which came back normal. I was also an excellent student and graduated top of my class at university, so his reading of my brain kind of baffled me).

Other than genetic or autoimmune testing, I've pretty much done it all and seen every doctor I can. I want so badly to believe this is a TMS syndrome because I am really struggling again with my mental health (no mania-- anxiety, insomnia, and racy thoughts), but there is some physical evidence for pain and I was in a car accident during my mania a month before the pelvic pain started.

I'm so sorry for the long story, but I was wondering if anyone has any insight, recommendations, suggestions or any thoughts on my very awful and weird case.

Much love and thank you in advance!

 

Hi Amir,

Your case is like so many who have come here and have benefited: no certain cause, no real effective treatment, plenty of diagnoses. There is nothing in your description that would make me think it is not TMS. But I am not a physician.

Many people go to a TMS trained physician in order to have more assurance on this. There are lists of these in the Wiki. Others simply use their physicians to "rule out anything serious." The pain caused by TMS can occur anywhere in the body, and be very intense, or prolonged or come and go, or you can have "non-pain" experiences like numbness, tingling, feeling of thickness, etc.

You might search the success stories or even use google to look for successful outcomes of similar situations to yours, using Dr. Sarno's approach. But reading any success story will help support you if you embrace Dr. Sarno's work.

There are free programs at the Wiki.

The starting point is to read and study one of Dr. Sarno's books thoroughly, in my opinion. Then come back to the Wiki and do a program, which you can also support by posting your responses or questions.

And read success stories. People have been in exactly your shoes and in a month or a year come back to tell us how well they are doing now. It is the Real Deal!

Andy B

 

I empathise, I had vulvodynia in 2013 which went away with medication and even weaned off meds with no pain.this has returned now but it's manageable with medication. It's definitely mindbody because nerve pain does not develop out of the blue ... PN also is quite rare ... the doctor who put you on lyrica and amitriptyline ... I took those too, the amitriptyline takes 3 months to work so you quit pretty soon...the lyrica is very strong and shouldn't be prescribed with elavil all of a sudden, it's usually taken by itself or added to elavil when you have stabilized. ... I am realizing my problem is mindbody because I had this relapse after a very stressful period filled with anxiety.
If you can do some deep breathing, this will activate your parasymapethic nervous system and this will lower your pain in time...trust me I am NOT ONE for meditation, I am restless and my mind is agitated, but I can still force myself to calm down .... I use Pacifica, it'a an app for anxiety ...really good, I use the free audio tapes they have.

So, if you can start to calm down, distract yourself from pain as much as you can,they can go away... when my paresthesia was very bad I used my day to watch tons of comedies to force myself to ignore it ...it works...

I doubt your back is causing it tbh ..it's more like a wound-up nervous system ...

 

Hi,

You sound like the most classic case of TMS ive ever heard. High stress, roaming pains, normal tests, no response to treatment, even eye floaters.

I like yourself developed PN with electricity like pain all the time when i sat, walked, had sex etc. Had a positive nerve block and diagnosed with PN. Before that i had back pain, nerve pain in my legs, eye floaters, dry eyes. Started doing tms work, exercise gradually everyday and bit by bit after 6mths i consider myself cured.

You need to wean yourself off the drugs, get your body moving again, let out all of this pent up anxiety/negative feelings on paper or with a therapist. But by far the most important thing is to know that you are ok. The pain you are in is just a bad signal. Your body is still functioning as it should, you just have to ignore this bad pain signal and find some happiness.

 

I had pelvic pain (urethral pain, then going into more general burning near the tip, then spreading elsewhere) for about 5 months. At its worst, it was constant, all day. And now it's all virtually gone. Took a while for it to go away, but after almost having hydrodissection surgery for pudendal neuralgia, I found this forum, and about a month later, my pain significantly decreased. Now it's about 99% gone. I don't even think of days as 'pain-free' anymore, because I'm now so far removed from the pain that I had. They're just normal days and the pain thing was this crazy, horrible thing I dealt with several months ago.

Your story sounds similar in many ways: lots of stress and anxiety (I have an anxiety disorder diagnosis), lots of various tests that came back normal, you got put on antibiotics with no help (they put me on 3 separate ones) - but ultimately, you're not sure what the heck is wrong with you because you've gotten so many different answers.

The other posters have some great advice here. I'd recommend you check out the Scheduled Educational Program and/or the TMS Recovery Program. And if I could offer a few words of advice, with TMS, I found that I needed to relax my way out of it. Income independence is important, or at least it was very crucial for me. It's counter-intuitive, but the key is to quit panicking about the pain, start living life like normal, and then quit caring about the pain. For me, that involved getting to a point where I accepted the pain might never go away, because accepting that was key to letting go of the fear that the pain produced. Once I did, then I quit paying attention to those fears and my pain subsidized, but it wasn't something I could rush with myself. It's almost like a Chinese finger trap; the harder you fight it, the worse you're trapped in it. Only once you relax can you escape.

Emotional work can be crucial to reaching that point.

Best of luck. If you're wondering if anyone else with a scary diagnosis of pudendal neuralgia/prostatitis/chronic pelvic pain has come here and gotten better, I'm one of them and there are others. Came here in October, and was back to living my life like normal by November. Had a brief flare-up in April, but it went away after a week, and I've been back on track since.

Doesn't happen that fast for all of us, but I owe this forum so much. It helped to give me my life back.

 

I seriously doubt PN/PNE even exists. There is almost nothing in the scientific literature that was reported until it became hysteria when a French doc wrote a paper on it in the late 90s (and started charging $$ for the very unsuccessful PNE surgery technique he invented).

I have been diagnosed with PNE by 5 PN "experts". I had 2 PNE surgeries that were unsuccessful. Yes, I was also diagnosed by S.Prendergast and Jordan with PN just like you. I recovered using the mind body approach. You may want to read my 1st post for more information.