New here and looking for answers

[Barre]

Hello ,

I am new here, I am 47 and live in Antwerp and suffer for the past three months from pelvic pain, possibly pudendal nerve related.

I have been to several doctors and specialists and after tests they don't really find anything wrong that could cause my problems so far. They are not sure but I obviously have complaints, they think that stress and hyperfocus is compounding my pain and symptoms.

Now I am looking into the mind body connection as I strongly suspect this plays a major part in my symptoms.

However, I am quite sceptical to be honest, it is not really backed up by the science although psychosomatic disorders and symptoms clearly are but it all seems abit floaty to me. Sorry to be so honest but this is how I currently see it, I am a very rational person, or at least I always was untill this pain hit me.

My symptoms however started after a traumatic and very stressful event that gave me weeks of very high anxiety, I convinced myself I had some serious condition (pudendal neuralgia) even though my symptoms where very mild or non existent, and after a couple of weeks in this state I actually developed the symptoms that are typical for this disease ! They wax and wane but my neurologist said this is typical for nerve pain. I am very worried that this will be progressive .

My question however is how can I convince myself that I am fine when this condition can never be diagnosed for 100 % as there is no clear standard for making this diagnosis, nerve entrapment or nerve irritation.

Please help because I am suffering with anxiety, stress and pain and it's starting to have a great impact on.my family.

Thanks!

 

[Cactusflower]

Hi Barre!
This method IS backed by science and a lot of it.
The problem is education. Most of the medical community is not educated in this area.. and studies for it don’t make drug companies money so not a lot of funding for the studies…but following this method takes faith. Faith that your body can heal itself and faith in yourself.
Your Doctors are far ahead of most! Here is a success story for you!
https://www.tmswiki.org/forum/threads/healed-from-pudendal-neuralgia-and-lots-of-other-things.23953/ (Healed From Pudendal Neuralgia (and lots of other things))

 

[JanAtheCPA]

Welcome @Barre. In addition to that success story (it's a really good one) I also recommend the information and resources on the website for the Psychophysiologic Disorders Association at www.ppdassociation.org

Did you say above that you are aware of science to back up psychosomatic disorders, but that you don't believe this exists for mindbody disorders? Maybe I misunderstood you, but please be assured that you are talking about the same thing! Our website was founded in honor of the work done (mostly before 2000) by Dr. John Sarno, MD, and as I recall (it's been awhile since I read his last book) he chose to avoid using the word "psychosomatic" because it had such a negative connotation of "it's all in your head, get over it". Yet it's always been clear that what he was talking about was psychosomatic pain, by another name. Today, the word "somatic" is still used in mindbody work, without the "psycho" prefix.

There are many documented examples of the clear connection between our brains and our bodies. One such is Phantom Limb Pain - now accepted by the medical community to be real pain that, in the experience of the brain, continues to exist in a traumatized body part that no longer exists. That's an extreme example. A completely innocuous example (and I think it is the first example that Dr. Sarno presents in his books and in the lectures he did decades ago) is blushing. Blushing is a physical sensation that is definitely experienced by the individual AND is visible to others as well, yet it is created solely as the result of an emotional stimulus. Just let that sink in for a moment...

And let's not forget the connection between stress and our GI systems!

It is, in fact, a neuroscientific fact that all physical sensations and all physiological processes originate in our brains. The concept that we're talking about here, and which is only slowly being accepted by the wider medical community, is that our brains are fully capable of creating any kind of physical sensation, and they are often capable of changing certain physiological processes, when they are under stress, distress, and duress, especially as a result of trauma.

When people report trauma, I recommend that they take a look at the following - you can take the test or not, which is just ten yes/no questions, while the accompanying information is a quick read which provides important facts about the connection between trauma and physical health outcomes.
Take The ACE Quiz — And Learn What It Does And Doesn't Mean : Shots - Health News : NPR

We have two free programs available here without any kind of registration or signup, although generally we first recommend that people read at least one book by Dr. Sarno (my personal favorite is his last one, with contributions by five other MDs and a psychologist) although even that one was written a number of years before many of the latest neuroscientific advances that have taken place since then. The PPDA probably has the most updated list of resources, but our forum has the most updated and comprehensive collection of individual stories and struggles.

Good luck!

~Jan

 

[Bonnard]

Hello Barre,

Picking up on this one part of your post:

....Now I am looking into the mind body connection as I strongly suspect this plays a major part in my symptoms.

However, I am quite sceptical to be honest, it is not really backed up by the science although psychosomatic disorders and symptoms clearly are but it all seems abit floaty to me. Sorry to be so honest but this is how I currently see it, I am a very rational person, or at least I always was untill this pain hit me.

My symptoms however started after a traumatic and very stressful event that gave me weeks of very high anxiety....

The symptoms starting after weeks of traumatic stress is a red flag for a mind-body connection. Check out the posts and stories on this site and you'll see that order where symptoms often follow intensely stressful episodes. The doctors and specialists not finding anything wrong and pointing to stress is another indicator.

There's also repressed emotions that can be connected to painful symptoms--our brains providing a distraction from those emotions.

Embrace and examine your scepticism!
Only you can feel those symptoms, right? If there is a mind-body connection here, only you can experience the solution.
Your beliefs/assumptions/open-mindedness/willingness to try a program or suggested practices, etc... will play an enormous part in what comes next. Starting with an honest examination of where you're at right now is really important.

I wish you well and really hope you find a quick resolution to these symptoms!!

 

[Bonnard]

I hadn't seen that post from @JanAtheCPA before I posted. That post is full of more-than-excellent info. and suggestions!
One follow-up is that you took the steps of finding this site and posting here. Keep that momentum going and follow up on some of the resources suggested, especially reading/absorbing that success story, reading a book by Dr. Sarno, and considering a program on this site.
Best to you!

 

[Barre]

Thanks to everyone for the kind words!

@Cactusflower yes my doctor is pretty good and understanding, she said that anxiety and fear over symptoms will multiply it by a factor of 10 or 20 , she prescribed a mild anti depressant to help me sleep and told me to have a thorough check up to assure myself nothing is wrong, I am a Hypochondriac and was hope with a burn out a year ago, I was recovering and doing good untill this started.

@JanAtheCPA Yes,I read several articles that claim Dr Sarno's approach is controversial and too simplistic to explain the complexity of pain disorders, however when reading further the medical community acknowledges psychosomatic pain and the treatment is basically the same, through counseling and CBT, a multidisciplinary approach, so there's that. Dr Sarno was a true pioneer in that regard imo, I don't believe in conspiracies about drug companies and doctors however, it can al work very symbiotic and complementary, working toward the same goal, relief of the symptoms.

I am not unfamiliar with the mind body connection and CBT, I have used it in the past with great success to deal with my tinnitus.

Jastreboff claimed that every stimulus, ie the tinnitus, can be filtered out by the brain if it starts to see it as a neutral stimuli that can be ignored, it works ! Well off course I still have tinnitus but 90 % of the time I am not consciously aware of it, I think the same is true for psychosomatic pain, my clinical psychologist said that chronic pain works much in the same way, hyperfocus. I remember that she advised me to stay away from online forums like tinnitus talk and now pudendalhope, they are horrible and filled with doom and gloom, thiswill.only fuel your fears that there is something horribly wrong with you, moreover these forums are not representative as only the worse cases tend to go on forums, the majority who recover don't feel the need to post about it.

One last thing, it's very hard to convince myself that it's not the nerve that got irritated or damaged, I mean, when you have back pain you can get a scan and rule out that there is anything mechanically wrong there and work from there, but how do you do this with something as elusive or sinister like nerve related issues, especially with PN, the diagnosis is almost impossible to make and is largely made by excluding all other factors.

Thanks!

 

[Barre]

I have been going through the pain recovery program by Alan and it's wonderful, it makes a lot of sense.

Many things seem very familiar and similar to tinnitus retraining therapies, although this seems harder because there is the fear that there actually IS a structural problem.

 

[michaelg21]

Just my experience, but I had constant, terrible pelvic pain for about a month. Completely went away when I stopped worrying about it. Something to be wary of is the idea of “nerve entrapment” causing pain. While it’s something we’ve come to accept over the years, there’s actually evidence of nerve entrapment occurring often in healthy, pain free people, much in the same way that disc changes occur in people without back pain. I know whenever I actually put a nerve under sufficient pressure (such as leaning on my arm for a long period) I don’t get pain. I get a hell of a lot of numbness, tingling, prickly feelings, but never pain.

 

[Barre]

Just my experience, but I had constant, terrible pelvic pain for about a month. Completely went away when I stopped worrying about it. Something to be wary of is the idea of “nerve entrapment” causing pain. While it’s something we’ve come to accept over the years, there’s actually evidence of nerve entrapment occurring often in healthy, pain free people, much in the same way that disc changes occur in people without back pain. I know whenever I actually put a nerve under sufficient pressure (such as leaning on my arm for a long period) I don’t get pain. I get a hell of a lot of numbness, tingling, prickly feelings, but never pain.

Yes, I notice that when I am distracted or not thinking about it, or generally feel hopefull that the pain tends to largely fade away or at least is less bothersome. It's not really pain most of the time, just some irritated feeling, mostly around my anus or perineum (oh joy) , it feels like it's sore or inflamed but there is nothing wrong visually, except some minor tears in the margo ani .

I started going through some succes stories and reading through the link that @JanAtheCPA so kindly provided and I will work on these issues and see where that takes me.

Again, thanks everyone

 

[JanAtheCPA]

these [symptom-specific] forums are not representative as only the worse cases tend to go on forums, the majority who recover don't feel the need to post about it.

And thanks for this, @Barre - this is a really great thing for people to know.

The only time I went on one of those was back in 2011, when a PT who was assessing my dizziness said that I might be a migraineur, so he wanted me to go on the "migraine diet". He gave me a handout, but I Googled around and found a forum where people were discussing their migraines and food. None of it made any sense whatsoever. There were people who could have red wine but not chocolate, and there were people who could have aged cheese but not red wine, and on and on. Talk about obsessing and overthinking! They were certainly into victimhood which I found extremely unappealing. I finally started laughing when one claimed that her migraines stopped when she eliminated avocados from her diet. It was all absurd. But then, fortunately, I saw the post from a guy who said he eliminated his migraines by reading The Divided Mind by Dr John Sarno MD. He was seriously abused by the other folks who were so very attached to their migraines, but I immediately downloaded the book from my library and experienced significant relief from many of my pain, GI, and neuro symptoms before I even finished it. I found this site, did the SEP, took advantage of the many resources available in the world of the mindbody connection and got my life back. I should have joined that awful forum just so I could thank that guy, but I never looked back and only had that thought some months later.

 

[Barre]

One thing that worries me however is the fact that my symptoms are very specific and never seem to migrate, anus/perineum and sitbone area.

I read that this is not typical for TMS?

 

[JanAtheCPA]

Hmm, well you certainly suffer from YBS.

That's "Yes, But... Syndrome". It's a very common TMS symptom, and one which we can 100% attribute to the resistance of the TMS brain mechanism.

To answer your question, unrelenting symptoms are not common, but that doesn't mean they are not possible. Take a breath and think rationally about that for a moment.

Many people accept their self diagnosis and do the work before their symptoms can become unrelenting. An extremely resistant brain can certainly create unrelenting symptoms, and an unrelenting symptom should certainly be checked out. The thing is that you've done that. Ask yourself: since none of the professionals can find anything to be treated, does it make sense to let your brain continue to resist?

Find a way to thank your brain for being concerned, but that it's not necessary! (I have always found that talking back to my brain is surprisingly effective!)

 

[Barre]

Hmm, well you certainly suffer from YBS.

That's "Yes, But... Syndrome". It's a very common TMS symptom, and one which we can 100% attribute to the resistance of the TMS brain mechanism.

To answer your question, unrelenting symptoms are not common, but that doesn't mean they are not possible. Take a breath and think rationally about that for a moment.

Many people accept their self diagnosis and do the work before their symptoms can become unrelenting. An extremely resistant brain can certainly create unrelenting symptoms, and an unrelenting symptom should certainly be checked out. The thing is that you've done that. Ask yourself: since none of the professionals can find anything to be treated, does it make sense to let your brain continue to resist?

Find a way to thank your brain for being concerned, but that it's not necessary! (I have always found that talking back to my brain is surprisingly effective!)

@JanAtheCPA

I am a HighSensitive person , at least that's what a psychologist told me at one point years ago.

2 years ago my father passed away, I got in a divorce that crippled me with guilt , and as a result my tinnitus acted up and I stayed home with signs of a burn out. I am always overthinking and it's hard to find peace from the chaos in my head at times. I was also sexually abused as a child but I always supressed it I guess, never really tought about it or saw it as a probelm untill recently.

Fast forward to now, my symptoms started after I tough I caught HIV or an STD , I was panicky, stressy and had high anxiety for weeks, completely focused and checking madly for symptoms , googling for hours on end, there where no symptoms off course, just anxiety related issues when I look back at it, but I convinced myself that I aquired Pudendal Neuralgia , and like a self fullfilling prophecy I got the typical symptoms after awhile , maybe because my pelvic muscles got messed up from the stress or who knows !

Now that I think of it, first I had symtoms in my anus , than they switched to my side (sciatica) , than the tip of my penis (prostatits) , and now back to my anus/sitbone.

So maybe not so unrelenting as I tough, I actually had an almost painfree day yesterday because I was confident that my mind was creating these symptoms, started today almost symptom free untill I started to feel something again and I panicked again, now the symptoms are back , not in full force but definatly worse than yesterday. I did have a physiotherapy session yesterday so maybe that was what made it better but so far it seems rather shortlived.

Sounds familiar ? I think it does !