Pudendal nerve/chronic pelvic pain: 25 year old sufferer for a year and a half

As it says in the title, I am 25 years old (my birthday was only two days ago) and have unfortunately been suffering from chronic pelvic pain since February 2016. I apologise in advance for the info-dump that follows but I can think of no other way of explaining why I'm here.

I'd like to share my experiences in the hope that someone might be able to shed some insight or help steer me in the right direction.....Thank you in advance!

I have, to say the least, been through a year and half (or thereabouts) of hell. My symptoms occur daily - as opposed to "flare-ups" - although they shift considerably in terms of the intensity of the pain and discomfort, sometimes dependent on different activities.

I experience, this being my most consistent affliction, a sharp shooting pain deep within my rectum. On occasion, the pain can extend into or even arise from the perineum - but this is usually only when its at its worst. I also have dysuria, although this symptom fluctuates a lot: some days its very minor and hardly noticeable, some days the burning in the urethra is intense. Generally though, this particular symptom has declined since last year, although I did have a bad "flare-up" of it - if I might use that term - last month prior to a very stressful set of examinations, which leads me to believe that it may be somehow (or at least partly) psychogenic in nature.

Ejaculatory pain and difficulty achieving orgasm has also been a persistent feature of this medical condition. The symptoms are variable - sometimes I get a tightness, like muscular pain, in my perineal area during and after ejaculation; sometimes burning in the urethra and sometimes just a painful twinge. Again, it can be significantly lesser on other occasions and can change depending on how often I'm ejaculating in a given month or week. Ejaculation, from my experience, worsens the symptoms overall.

This all started during a highly stressful period of my life, back in 2016, not long after I had graduated from university and before I acquired a training contract with a corporate law firm. In this interim phase, I found myself in a state of "depression" as I worried about my future and applied for various posts with little-to-no luck. I had graduated university with a first-class degree but did not have a job immediately to go into after my studies finished. Other people I knew did and so as I sat in my parents' house over the Summer and Autumn of 2016, I became deeply distressed about my life and where I was going. I suppose it was an early-to-mid-twenties "life crisis".

At the same time, I became preoccupied with my image ( i.e. fitness, physique), probably because I had so much time on my hands, and felt sort of isolated now that I had nothing to occupy myself with now that my studies had concluded.

For years, I had suffered from bouts of social anxiety. I'm very confident at interviews and when delivering public speeches but have always had few consistent friendships. I tend to befriend people for a while and then become distant. In 2015-2016, I had reached a low ebb because I was no longer at university. I felt alone and knew that many of my peers were progressing with their lives whereas I felt myself stuck in a rut.

For some reason, I had started to blame masturbation for my social anxieties - as a convenient scapegoat for my problems - after reading articles online by a community known as NoFap. I took thereafter to quitting masturbation entirely in late 2015-2016, believing that it would help me. Obviously, I was deeply wrong. This entire obsession had seemed to cause me deeper anxiety and fixation. To this day, I feel that it cannot be a coincidence that I ended with pain in the penile, perineal and anal area - i.e. prostate area - given my months of believing that ejaculation/masturbation was helping to make me socially anxious.

In early 2016, I had finally got an interview for a big corporate law firm and was preparing for a mock interview when, in early February one night after a mock phone interview, I suddenly felt an agonizing jolt of pain in my petroleum, extending right down to my penis and testicles. A day or two later, I developed burning while urinating. I then came down, through bad luck, with a very bad flu type illness that floored me for two weeks.

After recovering from that illness, the symptoms returned with vengeance - just in time for my big interview with the law firm. Despite the pain, I successfully completed the interview and a few weeks later received a training contract to begin in March 2018 after I completed two courses required undertake it.

But I was in no mood to celebrate, given that my health problems were just beginning.

The rest of the year was taken up with me being diagnosed, firstly, with prostatitis and being put on a cocktail of antibiotics. None of them helped my symptoms except for ciprofloxacin, which I was only on for 4 days because it gave me an adverse reaction involving tendon damage in my legs. For some reason, my pelvic symptoms vanished for 2 - 3 months after this - the only real "break" I've had over the last two years - while I focused on my sore, damaged legs.

I thought at the time that this was me out of the woods but no, after a cold virus hit me around August-September 2016, the pelvic symptoms returned and I've had them ever since.

By this time I was at my third urologist and he diagnosed me with chronic pelvic pain syndrome.

In February 2017, a physiotherapist diagnosed me with pudendal neuralgia after a digital rectal exam in which I felt the shooting pain after him touching a certain area, which he identified with the pudendal nerve.

This diagnosis made me feel even worse after reading the PudendalHope forums and learning about "permanent nerve damage" and what-not. I became terrified to sit down for fear of causing further damage to the nerve. I never returned to the said physio again and a medical professional has not since confirmed or denied his "diagnosis" but the one thing I do know is that it hasn't helped me.

In addition to all of this, I'd been having constipation and hard stools since the onset of the symptoms in 2016 and was determined to fix the problem through diet (I.e. eating more fibre). I've been convinced since late 2016 that my constipation issue, which I've only just largely resolved, had been contributing to my problem or may even have sparked it originally.

And so, I'm now on this forum after reading about TMS and wonder if my symptoms could be due - at least in part - to repressed emotions, of which I've certainly had more than a few in my life. I'm still pursuing "structural" causes and hope to get an MRI scan done in the coming weeks but I feel that the emotional turmoil I went through immediately prior to coming down with the CPPS cannot have been coincidental in hindsight. There must, I think, be a causal link between the two.

If anyone can offer some advice, I'd greatly appreciate it.

 

Cpps is tms. Good news: it is harmless. Bad news: it can be very stubborn.

 

Thank you for the reply!

Have there been others on the forum with similar CPPS/PN-type symptoms then?

 

So many of us had pelvic pain. Welcome... you are safe here. I have done pelvic floor meditation and yoga together the past few years... sending kindness, oxygen and blood flow to tense and locked up muscles and fascia.
HOPE: Hold On, Pain Ends.
Glad you found us!

 

I love that! HOPE: Hold On, Pain Ends!

 

@Vouthon You replied to a thread of mine so you know that despite being different genders, we have similar symptoms. I can relate to so much of what you wrote - the stress at the time on onset, constant pain not flares that varies in type/intensity, the same mixed-bag of diagnoses, social anxiety and difficulty maintaining friendships. I find all those personality and pain similarities between our stories reassuring as I think it tells us both this is TMS

 

Thank you for the message Bodhigirl,

I am, on one level, deeply saddened to hear that many of you have struggled with ongoing pelvic pain - as I know from first-hand experience the tremendously negative and debilitating effect it can have on one's life.

Nonetheless, I am also reassured that there have been a host of other people before me who have found help and solace in treating it as TMS.

There is indeed Hope!

 

Indeed, there are many compelling similarities between our respective stories!

I had always suspected in my own case that the onsent of immense levels of stress directly prior to experiencing the first symptoms could not have been coincidental, not to mention my long-standing issues with social anxiety.

When I read about the TMS etiology as described by Dr. Sarno, how the pain serves as a distraction from very raw and overbearing emotions, something seemed to just "click" in my head. I could relate it to my own situation, as I see you can as well!

It is not for nothing, I should think, that our psychological struggles are so similar just as the manner of our pain is as well.

I also found this story (also by a man) last night. He had chronic pelvic symptoms, as well as a history not dissimilar to ours, and managed to successfully treat his condition as TMS after 3 years of failed structural diagnoses:


http://www.tmswiki.org/forum/threads/pelvic-pain-prostatitis.12974/ (Pelvic pain/prostatitis)

"...I had everything from perineum pain to rectal pain, Buttock pain and pain on just my left side through out the years. But the fact that the pain moved at all, even just by an inch, for me turned out to be good clue...

I made the decision that I was going to do every thing Dr Sarno and other mindbody drs recommended. I knew in my heart I had found the answer. There was zero doubt in my mind. A year is a long time but what other choice did I have? I told myself "I don't care if it takes two years!" I was going to heal no matter what! Well it has been nine months so far, and I feel like a million dollars so far. The pain is melting away, in both my pelvis and legs. I haven't felt this good in 3 years...

When I started studying mindbody/TMS, I thought back to when my pain started. It started out of nowhere when I was working the worst job of my life. I thought it was the long hours of sitting, but obviously that is bs, otherwise almost everybody would have sitting pain. I was working as a patient watcher. I had to sit in hospital rooms with drunk patients, patients on drugs, suicidal patients, mentally ill patients etc for 12 hours over night. The anxiety that job gave me was through the roof. I was scared for my safety, the patients safety, and the staffs safety. One night the pain started and I blamed it on the hard chair and 12 hours of sitting. Anyway, this job was just one of many things that was going on in my life. Looking back now, I realize my emotional health was a terrible mess. I had also just dropped out of college because the stress and anxiety had caused me to develop a panic attack disorder the year before. The psychotherapy I did with a college therapist and dropping out made my Panic Attacks go away and then boom my pelvic pain started. Now I realize it was the "symptom imperative" that Dr Sarno talks about. It was the same bullet, but new target. And I was probably headed towards an emotional breakdown, which is why my physical pain started as a distraction. Although dropping out of college took stress off my life, it made me feel like a failure. And I was ashamed to tell my dad. My whole life he put a lot of pressure on me to graduate college. I felt like I let him down and my self esteem took a huge hit. And as if this wasn't enough, I was also dealing with relationship issues..."​

 

Mine is not ongoing -- it's gone. I merely practice the yoga meditation to keep healthy mindbody connection. There is a cure. It may have relapses for some but this part of me is well now.
Best wishes!!

 

look up my posts on this site, I had CPPS and its now gone, it was all TMS ! it can start structural (in my case kidney stones) or as simple infection but the anxiety and preoccupation around it will turn it into full blown psychosmatic disorder/TMS that will have a life of its own, especially if there is an emotional mix going on at the time when your symptoms started. (for instance, divorece, break up, huge stress at work.. etc)
A word of advise, stay away from the pudendal site, i was suicidal for almost a year after I read the stories there.
Also, deal with you emotions, apparently alot of people start to practice outcome independence and their symptoms disappeared just to pop up in a different place - the same is happening with me, as soon as my CPPS disappeared, my buttocks and legs started to hurt, every day different location, one day buttocks, the other day left leg, then right leg and so on..
Read this: http://www.tmswiki.org/forum/threads/pelvic-pain-healed.8680/ (Pelvic Pain - Healed)

 

This is a highly instructive and encouraging post, many thanks for your intervention! (especially since you have personally been through the ordeal that is CPPS). I will reflect upon the information and link that you have kindly provided.

Interestingly, I'm only at the very [very] beginning of the TMS-treatment process but already I have noticed that, in tandem with still experiencing anal-perineal pain, some sharp aches similar to the CPPS have at times arisen in other parts of my body. For instance, two days ago I was trying to focus upon my emotions while writing a journal entry when I suddenly felt this sharp twinge of pain in the arch of my left foot followed by the same painful "jolt" sensations in my lower back, after gently feeling the area.

There is absolutely nothing structurally amiss with my foot or lower back and I've never been troubled with pain in these regions before.

 

Hello!

I was diagnosed with chronic prostatitis last summer. Went on three different types of antibiotics. Then I was told it was due to a pelvic alignment issue. Then it was labelled chronic pelvic pain/pudendal neuralgia. I visited so many different doctors and urologists without anything helping (apart from brief resolution after physical therapy, which I attribute to placebo).

My symptoms were a constant burning in the urethral and rectal areas, urinary frequency and interrupted flow, occasional sharp pains in the genital region, (briefly at one stage) a strange pressure in the perineum.

I also spent way too much time on the pudendal hope forums (the worst thing possible for your mind and for making TMS worse). And then I read about TMS last October, and realized that my symptoms had changed so much and were so inconsistent (and the things that had made it better were also so varied) that only a psychosomatic cause made sense.

And I've had about 7 months nearly pain free, I think. Most days I don't even think about being pain-free because all the pain was just this crazy part of my life that's over now. I consider myself practically cured at this point. I had a flare-up a few months ago, but got that under control; if I have more, I'm confident I can control them. I just rode my bike 30 miles today actually! No more seat cushions for me No internet forums telling me sitting is dangerous or what surgeries people I should fly halfway around the world for. No doctor appointments. I can urinate like normal. Sex stuff goes perfectly well. It's all back to normal.

So if you're wondering if pudendal neuralgia/chronic prostatitis folks have found relief here - yep, we have! I'm one of them. If you're looking for encouraging stories, there's quite a few here

There's also a range of techniques that have helped us; emotions definitely are key though. While for many, certain deep-seated emotions or traumas are the case, my case was more by extreme fear sparked by a false positive on a routine STD test (never get an IgM test for herpes! Great article by Scientific American on their high false positive rate). Began obsessing about possible symptoms. My fear was really what grabbed hold (the fear that this would never go away or was something very serious). Once I worked on outcome independence and accepted that I could live with the pain, the fear subsided and the pain subsided. The pain was like a Chinese finger trap. Only by accepting it and then ignoring it did it subside. The more you fight it and pay attention, the more you feed it.

I also pulled myself away from the internet health forums, threw away my donut sitting cushions, began riding my bike, and began living my life like normal. It took a lot of patience, but I found a light at the end of the tunnel!

Best of luck to you!

PS: (I did both the Structured Educational Program and read through the TMS Recovery Program on TMSWiki - both are great resources and I'd definitely encourage you to check them out)

 

I want to thank you Carbonevo, C90danwaiel, Ezer , Balto and others who got cured of Cpps / PN/PNE and share their stories with others.
I am here on this forum since last December when I was totally hopeless.
I have read all your posts word by word obsessively , but that was the only way for me to calm down when I had a bad day.

 

Glad you are doing better adyxon!.
There is no need to worry, the bitch is painful, but totally harmless! Imagine ezer had his pelvis cut open twice and despite all that recovered and enjoying life.
C90 is most of his days pain free.
I beat cpps completely, tho now struggling a bit buttock leg pain, but that's totally ok, I'll beat those too just as I beat CPPS.
a little tip when you feel overwhelmed by pain/anxiety, just relax and
fuck pain!:

 

I had a bit of a rough day yesterday and to an extent this morning.

It followed two 'good days,' in which I really only felt that jolting pain in my rectum once (but otherwise was pain-free) and had been writing about my emotions in a journal, while getting on for the first time in a while with my daily life without constant preoccupation with the symptoms.

Unfortunately, I had a sort of relapse yesterday morning when I awoke to feel burning pain. I think this affected my confidence, which set me in a bad mood and in turn predisposed me to become preoccupied with my symptoms again, setting the whole thing in motion as I got worked up.

I keep reminding myself that 'Rome wasn't built in a day' and that I'm a work-in-progress. I suppose one has to expect relapses, especially since it took other posters months to improve.

Interestingly, I'm still feeling pain move. Today, after urination, I experienced a jolt-like pain in my rectum - the kind of pain I'm used to - only this time it extended down the top of my left leg, to my upper thigh!!

I have never, ever, felt pain in my leg before and this was fascinating to me given that pudendal pain cannot - as I understand the etiology - move like this to a wholly different area which seems more appropriate for sciatic pain, an entirely different nerve. It was this same sharp pain that I've come to know (unfortunately) all too well, only in a totally different region of my body.

As I've been journaling and trying to focus more on my emotional state, I've found this "symptom-movement" occur whereas it has not before. I reckon this cannot be coincidental.

Added to all of this, I've gradually been getting over my fear of 'sitting' and doing other normal activities. Last week, for instance, I sat down for an hour on a concrete wall in the middle of a park with a group of friends - something that would usually terrify the living daylights out of me (i.e. "permanent nerve damage" in lieu of the 'Pudendal Hope' forum). This followed an hour long bus journey, in which I was pain-free. All the sitting didn't make me feel any worse and indeed has made me question if it causes me any pain at all but today, after having that relapse, I've felt the nagging doubt return in my mind to the effect of, "am I making this worse by sitting? Will I get permanent nerve damage?" (I wish I had never surfed the net and found that pudendal website, as it really does put the shudders up you! Terrifying place full of dreadful information, the sources for which are unclear as this pudendal thing is a very patchy illness in terms of genuine medical knowledge of its supposed etiology)

As I say, I am two weeks into this TMS diagnosis and still plagued by natural worries but 'Rome wasn't built in a day,' as I said earlier.

 

It sounds like you're making great progress with a great attitude. First of all, the pain shifting is a great sign! I had a similar experience - my pain shifted to my feet. As you know, the pudendal nerve does not extend to your upper thigh, nor does it extend to your feet. It was a big moment for me, and with this happening so soon after you heard about TMS, I think it's a great sign. Congratulations!

One thing I did - and you may already be doing - was to create an evidence journal of all the things that disproved my belief that the pain had a structural/physical cause. It could be the case that in the future, you do sit on something hard, and the pain increases. You've probably read about this in the SEP program on TMS wiki, but that's a conditional response, and they may take a little while to break. But those little slip-ups in the conditional response your brain has created between a certain activity (e.g. sitting) and your pain are what will help bolster your belief in TMS and ultimately break that conditional response. And you've got two great things to put down already: no pain while sitting on concrete, and pain beyond the area controlled by the pudendal nerve.

Keep up the great attitude. It takes patience to recover from TMS, but it sounds like you've got it and you've got some great successes just a few weeks in. And you've got reason to celebrate and relax. You've escaped the spiral of panic and fear from the Pudendal Despair forums. You'll beat this. And if you need help our encouragement, you've got a whole forum of us here to help!

 

Hi guys! I want to thank you for everything you have done. My bad days are less than good days thanks to you!
I want to ask you few questions if you don't mind to answer :
- in a day when I don't have bowel movement my sitting pain disappears 96% -100% ??
If was a pudendal nerve wouldn't make any difference that's right?
- my symptoms are quite the same ( burning Prostate/bladder/rectum) . Never shifting.... I can see that your symptoms shifted before getting better. That confused me because my brain is telling me :" they are different than you, you may have something structural " you understand what I mean....

8 minutes agoEditDeleteReportBookmark
Reply

 

I can really relate to your story. I too started to develop symptoms after graduating and not knowing what to do next. Being back home after years at university and studying abroad and having nothing to do, I got obsessed with the way I looked as well: dragging myself to the gym everyday, focusing on my clothing style, obsessing over my appearance 24/7 (I would have full blown panic attacks in the morning when I was getting ready to go somewhere). In all honesty, my appearance had always been a sore spot for me but now it got problematic. I started to become very anxious and started to develop social phobia, insomnia, muscle spasms and had many panic attacks for the smallest things. Slowly I also developed rosacea in my face and issues with my eyes (light sensitivity, dry eyes, pressure behind the eyes, very red inflamed veins and eyelid twitching). It caused my skin to react badly to any creams and makeup and I was no longer able to wear mascara, eye-makeup etc. because they were so dry, bloodshot and painful. For me this was dramatic. I've always had low self-esteem and felt ugly troughout my entire life and make-up helped me cover up my insecurities (both figuratively and literally). Except for my parents, literally no one had seen me without it. Through journaling I discovered where these insecurities stemmed from.

Ever since discovering TMS my anxiety, insomnia, social phobia, panic attacks and musclespasms have faded away. My skin is getting better as well. I'm still working on my eyes though, it's my most persistent symptom and it keeps distracting me. I recently realized that TMS forces me to go outside and interact with the world 'bare-faced' and to show everyone who I really am (I used to be a people pleaser and wasn't true to myself because I wanted everyone to like me). To feel confident the way I am instead of hiding behind layers of makeup and a fake persona.

Your story and how your symptoms came about reminded me so very much of myself and helps me be even more confident in the TMS diagnosis. Thank you for that. I look forward to hearing about your journey!

Yasmine

 

Man . Every bloody forum on the internet is toxic. Especially when you suffer of Cpps !
Pudendal hope it's the worse one, then Dr. wise forum as well ( chronicprostatitis.com ) .
For example in dr. Wise forum every user has his symptoms and stuff at the bottom. We don't need to know that user X suffering cpps for his last 5 years and sitting makes his symptoms worse bla bla bla.
This is the only positive forum and we have people who got cured using TMS .
Searching in pudendal hope and cpps forum will do a big harm and will drag you down!

 

Same, when I look up my symptoms on 'specialized forums' I almost get suicidal. This forum has given me so much hope in my darkest days!