Pelvic Pain - Healed

Hi @Jason32 ,
Yeah, that's fairly accurate for pelvic congestion. Lots of people have it and have no pain. Bit of a diagnosis of exclusion, like pudendal stuff. My MRI was not with one of those specialists, just a general MRI, looked at by pelvic specialist who said they saw enlarged veins near pudendal nerve which itself looked fine but saw inflammation. Primary doctor doesn't have a clue what to diagnose. Did tell me it definitely wasn't psychosomatic thought!!!!

 

Your doctor is uninformed. A psychosomatic syndrome does not mean it is all in your head. It is both in your head and in your body (soma=body). Your psyche influences your body functions. The pain you perceive makes you involuntarily squeeze your muscles -like the obturator internus- in your pelvis.

My pudendal nerve was badly inflamed because the muscles around it were spasming. It was reported by both a 3T-MRI and MRN that confirmed the inflammation of my pudendal nerve. It was then interpreted as PNE by the the so called enlightened PNE experts.

But the day my brain decided to let go of the tension, it all went back to normal.

 

So the nerve inflammation, swollen veins and so on is still meaning it is TMS? That is wonderful. Thank you for answering Ezer. I just wish it would work, this TMS method. I try to feel emotions but don't feel much except nervous and upset.

 

To my great happiness, I can now (on a personal level) testify that you were right Ezer.

Please read my story here:

http://www.tmswiki.org/forum/threads/my-recovery-from-chronic-and-debilitating-pelvic-pain-pn.19607/ (My recovery from Chronic (and debilitating) Pelvic Pain/PN)

After nearly two years of debilitating pelvic pain and having been diagnosed, separately, with both CPPS and PN, I've now went through months almost entirely pain-free. Day after day, feeling pain-free.

I still get the odd flare-up from time to time, but from where I was for the first year and a half I've experienced a dramatic improvement in my symptoms. It's like night and day, the difference between having zero quality of life and now having my life fully back.

As more and more of us improve, either dramatically or back to being completely pain-free, I predict that the evidence will gradually become too overwhelming to ignore. Already on this forum, there are a growing number of us who have recovered or are successfully recovering from CPPS/PN.

There might actually be more of us, because - in all honest truth- I haven't been back to this forum since February precisely due to the fact that I've been feeling better. Many people don't want to be reminded of the ordeal they went through but like yourself, I now feel obligated to help other people through this if I can.

I encourage people who are interested to read my first posts on this forum, to get a sense of how truly dire my situation was.

 

Hi Ezer, and all who posted to this thread. I'm a newbie here and have suffered from pudendal neuralgia for nine years and still going. Lately, due to more severe anxiety, it's been getting worse. I haven't had time to read all posts here yet, but when I read Ezer's I wanted to cry..... with relief and hope that is!

The first time I was diagnosed with PN, back in 2009, I wanted to commit suicide. My whole life changed overnight, you might say. This was shortly after my mother passed away, and as soon as I started getting symptoms of PN (namely affecting my bladder, but also pain) my evil-ex dumped me. I only have a brother for close family, but I don't see him often as he has his own set of problems; friends kind of disappeared when they found out I was sick; I could barely work, but managed it; I lost my home and the ex ran off with another woman and our retirement fund. So I was in a pickle and searching for a way to end it all. The only thing that stopped me from doing away with myself was my kitty cat, Mitzy. She'd been with me for years, and she stuck by me through thick and thin. She stayed with me until I managed to get a grip on myself and some help from an understanding chiropractor, and then she passed on at age 21 years. Animals are beautiful!

I am still alone as PN doesn't let you have much of a life, and lately I've developed a stomach reflux problem that necessitated me going on a really clean diet. As a result, I lost 11kg and I was convinced I had some horrid cancer. My doctor was not very supportive and wanted to send me to all kinds of invasive tests. But I have had a traumatic experience some years ago with an invasive test and I will never have an invasive test again. My doctor didn't take this too well and was very satirical about my anxiety. He told me "Are you going to put this down to anxiety, too, along with your IBS and pudendal issues?"

Cut a long story short: I don't work anymore and live off some savings I have. I'm alone as I cannot have a sexual relationship, and I've yet to find a male who simply wants to be friends (I miss my gay friends from my youth! They were so nice and supportive, but over the years we lost touch). I'm now 56 years of age and have suffered with chronic anxiety since my early 20s (but my first panic attack was at age 14!); I had a very difficult time with my father when growing up; then, two abusive husbands; I've also I've had IBS since my 20s and then PN since 2009. My stomach reflux kind of developed over the years (I'm sure it's stress related), but I cannot eat the foods I used to love and my diet is rather restrictive (more stress); and finally, I was diagnosed with PTSD-C in 2011.

Sorry to waffle on. I just wanted to give you an idea of my background. I avoid doctors like the plague but I do take Valium to keep it together. I'm doing sound therapy as part of my neuroplasticity approach, and I've been reading Dr Sarno's books for quite a while now. I've been writing down my emotions, etc, but I never believed PN would be classified as a TMS equivalent....until now! This gives me reason to hope.

I'm now awaiting a DVD I purchased on the net of one of Dr Sarno's lectures (I'm based in Australia, and over here we don't have a single TMS doctor!); so I'm pretty much on my own. I'm also going to do some psychotherapy to help me to identify traumas, etc. I have a good idea already of what they are, but it sometimes helps to talk to others. Sometimes, though, my mood is so low that I start to think about doing away with myself again because it's all too much. My bladder issues seem to run my life (frequency and all sorts of strange sensations in there, voiding difficulties, getting up at night multiple times to pee, etc), plus sexual dysfuction, and pelvic floor pain that moves all over the place, but mainly sticks to the perineum, vagina, urethra areas as well as on/off buttock/sit bone pain.

Ezer, your story was so inspiring when I read it I really did cry. I didn't think PN was curable. You may have just saved me from doing something silly, and so I thank you. I do have a new kitty now. I adopted her because I knew if I had someone to look after I would think twice about doing away with myself. So far, she keeps me on the straight and narrow and I'm her slave, but she's very cute.

I will take the time to read all posts when I get a chance, but I'm so glad I found you people! You don't know how much!

 

Hi Syl, you are not alone! When I read your story I really could see parts of myself in that. I have these pain sensations you describe for 23 years. Though I never had been diagnosed with PN, only with CPPS. I was so lucky that I always could keep working. But the rest fits your story: dysfunctional family, father abusive, husband a narcissist who uses my competences for his career. I left him, because I wanted a better life. But it is difficult, as you describe, with bladder pain, pain in the urethra, sitting bones etc. I am your age and often feeling alone. I am considering dating again, but, well I am not sure I can trust again.
I had very good phases without pain in between and since three years I am doing much better. But, occasionally I have a flare and the desperate feeling and the anxiety is there again.
What I want to tell you is: yes, you can get better! Never give up! What you need is a perspective on yourself where you are not the victim, at least not merely a victim! (Of course, you have been treated badly and you have every right to mourn that and to be angry. From anger, however, comes also some positive active emotion, that is to do something about it.) You need to see that you have possibilities. I am really talking from experience here. Whenever I feel stuck and trapped, feeling like a victim, then I have pain. Calming the nerves, getting out of the feeling of being trapped, gaining the feeling of being in charge of your own life and last but not least: doing things in your life you really love! All that will help you! The symptoms you have are reactions of your body to how you felt about what happened to you. In the beginning it will be difficult because you are not used to think in positive terms, actually I can be scared about being in charge of my own life - it’s outside of my comfort zone.
I hope I didn’t projected too much of my own situation onto you! I hope anyway that some of my experience could help you.
On the more practical side:
All the symptoms you describe can be TMS, I also sometimes have a bit IBS (like many here). If you have blood in your stool, tremendous weight loss without dieting etc. then I would also recommend diagnostics. Can’t you find a doctor with a more sympathetic and educated character?
For a start you could listen to Claire Weekes, wonderful YouTube videos with her talks about how to get 9ver what she calls nervous illness.
Wish you a good day and a good week!
Greetings from Denmark.

 

Hi Time2be, greetings from the land Down Under

Thank you for sharing your story. It certainly does sound like we have much in common. For a long time now I've been suspecting that pudendal neuralgia (PN) is merely a diagnosis doctors use loosely because they have no idea what is going on. I've always been told by my chiropractor that he felt it was all anxiety-related. At first, I couldn't accept this--it was too much to take in, plus I was dealing with awful symptoms, the death of my mother, and a disastrous marriage breakup. Plus being very familiar with anxiety/stress (and yes, I know of Claire Weekes! She was a great lady) I could never believe that anxiety could create such a painful condition as PN, or what I now call non-specific pelvic floor dysfunction. There seems to be no pathology causing this condition and therefore it must be caused by the mind. I am now pretty convinced this is TMS in all its powerful glory, and I am working toward healing myself. Sometimes it takes a long time to get to this point, and each of us has their own journey to follow.

You are fortunate to have had such a long break from the pain; I've yet to experience this although I've had some small breaks and also many days where symptoms were at a minimum. It's only been in the last few months that I've been really bad again. I am sure this is all related to anxiety and my fears about life and suffering. I discovered that the biggest mistake many of us make is coming from a "victim mentality". This is the worst thing we can do, but this is what the brain wants us to be like to distract us, and it works well, doesn't it? This is something I am now working on changing.

Dating is out of the question for me, or I should say if I wanted to have sex. I get pain after orgasm and usually flare up. This is a typical PN symptom. But this wasn't always the case and I believe in time even this will calm right down. To tell you the truth, what I miss most is having a real friend. Someone who doesn't judge and who is happy to be friends and go for a coffee and a chat, or a walk or a meal. It's sad that many who suffer chronic conditions often find themselves isolated from those they thought cared about them. So on top of suffering with pain and with anxiety and fear, we must also suffer alone

I would love nothing more than to go back to Europe for a long visit. This has been my dream since I became free of all the crap (mainly meaning the divorce and losing my job, etc). But PN makes it impossible to travel a long way (at least for now). It takes approximately 22 to 24 hours to fly from Sydney to say, Rome or London. Again, I have reason to hope that one day I can go back to Europe and visit all the lovely countries I've been to before plus see new ones.

Re IBS, I believe this is definitely a product of anxiety, but IBS doesn't bother me that much. I have been to another doctor since the argument with my usual doctor, and the new doctor was happy to confirm my IBS--he was an older, more experienced man who had not lost the art of diagnosis, something that is missing these days in younger doctors. Anyway, he told me if I saw blood to have it investigated, but there was no need to do anything right now. The weight loss is definitely due to my new diet. I believe the reflux is also caused by TMS. So I seem to suffer from a cluster of symptoms that are TMS-related. Therefore, the common sense thing to do is to tackle TMS now that I have the mental strength to do this.

It's great that I found this forum, though. It gave me the proof I needed--that is, that one can cure themselves of things like PN through tacking TMS!

One day I hope I can visit Denmark. This is one place I have not visited as yet!

 

Yes Syl, PN is definitely TMS. As an ex-moderator on pudendalhope, I can tell you that close to 100% of the people that post on that forum suffered in the past from some form of trauma.

I understand your distress regarding intimacy. In regards to this, I recovered 100% and I am sure that you will also be able to return to a fulfilling life.

I discourage seeing a TMS doctor. It really backfired badly for me. When I mentioned PNE, the TMS doctor had visibly no idea of what I was talking about. When he said TMS, I did not believe him and it set me back regrettably.

On the other hand, I think you should contact Dr. James Alexander a TMS psychologist (he is located in Lismore NSW) and suffered himself from groin pain.

His web site is the following (albeit it was down tonight):
https://www.drjamesalexander-psychologist.com/

He posts also on Facebook.

 

Hi Ezer,

Thanks for your response. In Australia we don't have TMS doctors, that's how behind the times we are over here. I've contacted James Alexander some time ago (Lismore is very far from Sydney plus he doesn't do Skype consults; however, he gave me a couple of names of psychotherapists located in Sydney who understand the TMS approach. Having said this, I've decided to take matters into my own hands and follow your example plus that of Monte's. I also found some interesting material by Alan Gordon on the TMS thread, which I found helpful. I'm fairly confident I can deal with this myself. I have to say that your story greatly inspired me! So if I cure myself of this condition you'll be the first person I will thank, for it was your post that spurred me on not to give up on this journey. After nine years, I was already on the journey, but I needed that little extra push to take full responsibility for my condition and deal with it rather than take a passive approach.

I already knew about TMS but wasn't sure that PN was considered TMS, although I suspected it all along. As for the PudendalHope support group (and other groups I found on Facebook) I didn't even last a week on those forums; I simply left them. All I saw there were very negative stories and some real horror ones. And I was actually shot down in flames by one woman simply because I wrote that after I tried all conventional therapies (none of which worked) I was looking at neuroplasticity. She wrote back and said, and I quote: "I'm not ready to walk over hot coals...." I can't remember what else she said, but this convinced me this woman was caught up in victim mode and she was passive about her treatment, expecting a magic bullet of some kind. In any case, she thought I was probably talking about the rah rah of the likes of Anthony Robbins, but I wasn't, I meant the work done by the likes of Michael Moskowitz (with brain maps), the NOI Group (they have a similar approach and they wrote a book called "Explain Pain" and a workbook called "Protectormeter"). This is similar to the work of Michael Moskowitz, and of course I was looking at TMS because this, too, is neuroplasticity. We are changing our brain and the messages we send to it by coming up with strategies to rewire it with a more constructive approach in how the brain perceives pain, hence we are creating new brain maps or strengthening old brain maps which no longer serve us. I decided this was the way to go for me, but none in the Facebook groups talked about this. They were all looking for the next drug, injection, surgery, or therapy that would cure them, etc, etc. It was depressing and I simply had to leave all those threads so I could get on with building my new brain maps.

So I decided to take charge of my condition and do everything in my power to effect a cure (or at least a huge improvement). As I am sure you will agree taking a passive approach and expecting someone else to cure us only reinforces the brain in its old way of thinking, with its old brain map (and this keeps us trapped in pain). Anyway, wish me luck on my new journey!

 

Syl, you are on a very good path. You seem to be very skillful to collect and use your resources. You just need to be patient. I never have been diagnosed with PN and I myself never thought I am suffering of PN, but my symtoms also sometimes come back with a vengeance when I put myself under too much pressure.
the dating thing - well, it's complicated. Not that friends are not complicated at times, but they are usually more reliable Is there anything you can do to find new friends? I guess you have thought abut that already ...

 

Hey there,

I don't think doctors can make up their minds which is the best way to diagnose PN; in fact, they don't know very much. After nine years of these symptoms, I'm so fed up with them that I want to find a way to have a life... somehow. My symptoms have grown worse in the last 8 months due to other stressful situations in my life--and the brain has a way of changing them, which puts more fear into a person! I was so used to my old flare ups that I got to a point where I paid very little attention to them; and in the end it seems my brain decided to vary the symptoms so that I can worry all over again, thinking I have a tumour or something horrible like that

I don't want to go to any doctors or tests or even physio. They are all useless. So my last hope is to do this the TMS way. I do hope it works. I certainly have enough traumas and negative emotions from the past to work on.

Dating is not my priority right now, and true friends are hard to find, especially when one has a chronic condition. Anyway, my focus is on working on this condition so it will go away for good. I want to travel again and do the things I used to love doing.

Keep well

 

Hey Syl, i'm 35 and have a very similar story (and symptoms) as you. My life took a big hit, and often times all i can muster is going home and laying in bed with my cat. I also suffer lots of depression because of loneliness. i have friends, but they all have their own lives, and when i need somebody most, it's usually around 11pm on a weeknight, not exactly a good time to be social!

A few things i've been able to cling on to, or get back, is social activity, and yes, even sexual activity. Your brain creates associations (certain activity = pain), and i still struggle with this, but it's gotten better. When i first got PN symptoms, i knew what it was, but it still took a couple months to see a "PN expert" to confirm it. Up until that time, i didnt have sitting pain or rectal pain, which are very common with PN. When i saw the doctor, his advice was basically to give up all activities that irritate the nerve. Bike riding, sex, sitting on certain surfaces, etc.

I left that appointment very depressed. you know what? the next day i had sitting pain and rectal pain, which i never had before. Like most people, i went out and got an ergonomic cushion for pelvic pain. I became psychologically addicted to it, assuming i could not sit without it. When i learned about TMS, the first thing i did (besides trying to get my mountain bike life back, which i mostly did) was learn to sit without that cushion. I started by leaving it in the car when i went into restaurants or friends houses. i had to build up learning how to sit without it. My body rebelled at first, but over time, i adjusted. I dont need it any more.

As for sexual activity and relationships, this has been my biggest fear. however, i've had pelvic pain and sex pain ever since i was a teenager. i've never had a normal sex life. i can still do it, it just hurts. I've found coping mechanisms that make it hurt less but i dont know if i'll ever be pain free. However, for some reason, most men were understanding. I basically told them "i have to do things a certain way, a little bit different, but mentally, i still am into it". That was good enough for them! in other words, if you're really hurting, there are non-penetrative things you can do. Most guys will just be happy to get any attention if they really love you. Despite being in pain, i still sort of force my way thru the activity to continually convince my brain that it's safe to do. I still have to use topical lidocaine, and i still take hot baths afterwards (sometimes), but things got better in that department too. It's mostly about introducing once-feared activities back into your life. I found that i'm in MORE pain when i lay around playing on my phone and feeling sorry for myself. But when i find reasons ot get on my feet or go out to eat with a friend, i seem to have no pain at all. even while sitting. Good luck, i'm still on this journey too.

 

Hi Nicole,

I can so relate to the loneliness, depression, and no one to be there when you need them most. Even family is not always helpful; I may have something simple to fix in the home, but if my brother (who is the only family I have left in Australia) is too busy, I end up having to pay a handyman to do the job or I attempt to do it myself (if I can). What hurts most is that not having a work income because my last job ended (it was just a freelance gig), and it's very difficult to find a proper job when one cannot commit to set times, etc, it not only hits you emotionally, but in the pocket; and then I start worrying about finances and whether I can afford to stay afloat. PN has cost me more than my personal life; it cost me my home (which I had to sell in order to have some savings to live on), and it cost me a fortune at first when I used to run from one physio to another or one chiro to another, etc, always looking for some kind of magic treatment. I'm now at a stage where I don't go to any practitioner of ANY kind. I'm done with wasting good money on something that I've been recently suspecting doesn't even exist. In fact, I've been corresponding with Alan Gordon regarding his program and if my condition is considered TMS, and he had this to say, which did not at all amaze me because I've been thinking the same thing lately:

"I’ve worked with probably 7 patients who had been diagnosed with PN, and every single one of them ended up being TMS/PPD. In fact, there is a urologist in Cedars Sinai I work with who told me that he doesn’t believe that PN is even real. He said it’s like the “fibromyalgia of the pelvis”."

I think we should forget the classification of what we were told we had, in my case, pudendal neuralgia, and simply accept that this is truly a psychophysiologic disorder (PPD), which is what many doctors out there are now discovering and writing about. So Alan's program is perfect to help us to overcome this condition.

I believe that what the urologist said to Alan is so true. He's not negating that we are in pain; in my opinion, he's simply saying that they had to slap some kind of name to these particular set of symptoms, and the pudendal nerve seems to fit that bill I guess. As for the doc who told you about the rectal pain, etc, it's amazing how your mind/body responded! It is so true that the reptilian brain can sense everything as a threat! And this is our challenge.

After nine years of living with this crap, I'm finally starting to let go (slowly, slowly) of the idea I was also given about PN back in 2009, when not much was known about this. I was told all the wrong things: How I can measure success by having less flare ups over time, and this isn't always the case. Success is measured by living on despite this thing and showing the brain we no longer give a rat's ass about this--and over time the brain will re-map itself to agree with us because we're no longer focusing on the pain. Easier said than done, but it's being done--and even you are doing it yourself! I was also told about posture and how to sit, and what I could and could not do, etc, etc. And every time I had a bad flare up I was told to look for a trigger, and yet there doesn't have to be a physical trigger. All this held me back from recovery, and like you I've come to associate flare ups with certain physical things I did; the way I sat or because I vacuumed the floor for too long, or whatever. Besides, in the last decade, I've had so many changeable symptoms that it is just NOT possible that I have something wrong in a physical sense. The thing is all over the place. So when I get flare ups, especially the ones that jump around from one spot to another, and pain and sensations that go here, there, and everywhere, I now try not to pay attention. It happened to me only last night. Just before dinner, I had a major flare up with a whole bunch of symptoms. Luckily, I did not panic and I told my brain in f**k off. And guess what? Within 30 mins or thereabouts, the symptoms scurried away, like the cowards that they are

I can relate to your cushion thingy, though. I sometimes take cushions to sit on at cafes, etc; but sometimes I don't. I'm still trying to wean myself off these. It's interesting, however, that I can usually sit quite comfortably on a Bentwood chair, but not on a hard plastic chair. I sit on most sofas and office chairs without cushions, but I find metal chairs (and plastic) rather uncomfortable. Park benches are bad too.

Re sex. I used to have sex without any real problems. After a while, however, I noticed I would sometimes flare up a few hours later or by the next day. I never paid much attention to this, but then I read somewhere that orgasm makes you flare up... and well, I then associated orgasm with a flare up, and this is when I gave up on sex. By this time, though, I was no longer with my ex and I didn't want to get involved with anyone else, except David Bowie (in my dreams!). It's interesting, because the thought of sex with a man frightened me because I knew I would flare up, but when I imagined sex with David Bowie I would've shagged his brains out--pain or no pain! And I bet if my fantasy because a reality I would not have flared up with him. That's how my brain would have perceived it. Anyway, just as an aside, the moment I heard he passed away I flared up immediately. How's that for the brain perceiving this as a danger? I was plunged into instant grief. I should say that I've been a David Bowie fan since my late teens--and I am now 56 and still feel the same about him. But this is another story...

I think your introducing once feared activities back into your life is great. I'm starting to do this, too. But I guess it takes time for the brain to be re-mapped. One thing I'd love to do is visit Central Australia (again) and go for a camel ride. I'm sure my brain wouldn't like this, but I'd like to challenge it; and maybe, one of these days, I will do just that.

Good luck on your journey, too, Nicole! You're on the right track. And if you fancy going for a camel ride in the Aussie desert, please let me know

 

Hi everyone!

I'm new to this forum, and not quite sure how to use it as I'm so used to just Facebook etc, but I'll do my best!

I have PN after giving birth (19 months now) and around October of last year I was looking for a pain therapist and stumbled upon this wiki. I work with one of the awesome TMS therapists who was the first person to inspire me, give me hope, and suggest a mind/body connection. Let me tell you, I have been very stubborn about truly believing it was TMS, and it was so tempting to jump on the PN forums on Facebook and commiserate with my fellow sufferers. I was intrigued though, after reading many TMS books and noticing that an anti-depressant helped my pain - if pain decreased when my mood was better, surely that was suggestive?

I am still on a very long journey and I haven't recovered fully yet. However - last year I was in a wheelchair, and this year I am walking about and able to participate in life again, even though I'm not yet at the point of being able to sit. Hopefully this will come in time. The real changes came since really accepting the TMS theories and applying diligently the techniques. I hope I will be able to post a success story one day!

I should add too that I work with a wonderful PT. I know with TMS you're not encouraged to see a PT, but in this case I explained to her my take on the pain and she wholeheartedly agreed that it was trauma (from the birth) rather than anything physically wrong that was causing my pain. She noted that my feet were very cold and said possibly I had vascular constriction (which ties in with Sarno's thoughts about oxygen deprivation perhaps) and works on releasing the very tight fascia all around my pelvis and legs. It is her belief that the trauma has me on constant guard (tight fascia, muscles etc) from the waist down and that this is the main reason for my PN pain. I should add too that I have had pelvic pain my whole life, so the traumatic birth was just the icing on the cake.

I also want to add that I know there is some controversy about whether TMS can cause inflammation. Well, for me although no inflammation showed in my MRI my main symptom when I flare up badly is inflammation feeling. If I have TMS - which I feel I must do as since working on TMS strategies I've improved - then inflammation can definitely be part of it. Honestly, I think the mind is capable of really crazy stuff. I was watching yesterday a clip about a woman who has what used to be called a hysterical pregnancy. She wasn't actually pregnant, but her stomach had actually ballooned. She even felt the baby kicking and "heard" the baby's heartbeat on a Doeppler machine. She had been "pregnant" for over 3 years, but her symptoms were so real she was convinced she really was pregnant. Phantom limb pain is another example. If all that is possible, I'm sure inflammation is too - particularly if the muscles are constricted around the nerves.

Anyway, I wanted to add my story so far - which is far from over, and I still have a long way to go - simply to inspire some hope in PN sufferers who are out there and as desperate and confused as I was. To them I say...1) Get off the PN forums on social media. 2) Read TMS books 3) If you can, work with a TMS therapist - if not, complete Alan's course here, and 4) Keep thinking psychologically. This was a game changer for me, addressing my anxiety/depression as the priority, versus the pain as a priority. Meditation and gentle yoga has also helped.

Good luck everyone, especially those with PN diagnoses! It is ROUGH, but I believe you can heal.

 

Hi Plumshower,

So sorry to hear about your struggles with PN. As a nine-year sufferer of PN, I can relate. I have read that PN can actually develop for a while after childbirth, but that eventually it settles on its own. I never had children, so my PN is obviously due to something else. But this is how tricky the brain is: I got to a point where I lost the fear I used to have from all the flare ups of PN, and since April of this year my PN symptoms changed quite a bit (and they targeted my bladder a lot more, which is an organ I've had problems with since my 20s--I'm now 56). To me, this proves that the real culprit is TMS. No sooner did I learn to live with my bladder problems that my stomach issues made a comeback! Yes, I have LPR (laryngopharyngeal reflux) and I'm on a low acid diet, which made me lose about 12kg. I was already slim; now I'm super svelte, but I keep worrying that there is some horrid disease in there somewhere. I eat really clean and my diet is restricted, and yet the bloating, nausea, and constipation have made a comeback. I've also suffered with IBS for about 30 years but I don't even pay attention to it anymore; IBS has also started to make a comeback since I decided to ignore the PN symtpoms. So now I'm juggling these three conditions, plus panic attacks (I've suffered from anxiety and panic since my early teens)--and this has made a huge comeback too!

I got so fed up with it all that I'm now waiting to see if I live or die. If I live, it's TMS; if I die, it wasn't TMS--but at least I don't have to put up with the constant worry anymore. This is how far I've been pushed psychologically, that is to the point that I am losing my fear of dropping off the twig (as long as the suffering stops). Apologies, I don't mean to depress you; I just had to adopt a morbid sense of humour so I can laugh TMS off.

Hang in there, and all will be well. I so totally relate to the Facebook PN support groups. They have to be one of the most depressing and horror-striking set of forums I've ever had the misfortune to discover. In any case, I've long been suspecting that PN does not exist; even if the pudendal nerve was irritated during childbirth, that injury is now long gone and your brain simply developed a brain map for chronic pain from that area. I now believe PN is just a term used very loosely these days. I've been corresponding with a doctor who specialises in chronic pain and getting rid of it through neuroplasticity (or bioplasticity, as he calls it). The brain is a powerful tool and it can do many things--ever unlearn pain (which is what TMS is also all about). Another person I communicated with told me that some call PN "the fibromyalgia of the pelvis". I think PN is like IBS now--a total mystery, wrapped in an enigma called TMS

 

Hear, hear! I suffer pn-like pain. I'm not on FB but, for a while I was a member of the Pudendal Hope forum...or as I now call it the 'Pudendal No-Hope' forum - being on there was the pits - so absolutely depressing!

 

Welcome here, Plumshower@! A traumatic birth, I am so sorry! You say that you had pelvic pain before. This sounds to me like the birthgiving has aggregated a condition that was there already before. And pelvic pain is most often TMS. I don’t think that there is a real inflammation, though micro inflammations might be possible.
You are absolutly right, do not consult the PN forums, they only keep you in the sick role. You are very brave and take your measures to get better, that’s good! Maybe you could find a therapist you can work with?
Your nervous system has to calm down and the tense muscles have to relax.
Syl@ you seem to be in a very fatalistic mood. If you really think that you might have a serious disease in the stomach or bowels you should see a doctor. But maybe the morbid sense of humor helps you?

 

I see Syl, I did it noticed that you had IBS for so long. As long as your mood helps you. Although I have found out that I used a strategy that was not helpful to get better. I alsways thought I should not force it, I should not to drastic things, basically I thought I could by I interpreting things in a different way. Of course I tried diets and yoga etc. But not self guidance. I think in the background lures the disbelief that I change this. This is deeply engraved into me by my family: you can not control what happens - therefore my father is constantly going to doctors as an anxiety reaction. And my mum ist just fatalistic. But it starts to dawn to me that I can get better and that I can do something for it.
Wonderful that you are a creative person! I hope your mood changes to optimism now and then ...

 

Hi there. We have this in common. My parents were from the generation whereby whatever the doctor said, they did it. My father was more like this than my mother, but they too rushed to the doctor for every little thing, and they always thought the worst, too. I guess that passed onto me and my brother. That is, thinking the worst. The only area where we differ from our parents is going to the doctor. My brother avoids doctors like the plague, and I only go to my doctor simply to discuss health issues (when I am fully armed with information). So in actual fact, it is I who tell the doctor what my diagnosis is. These days, I know so much about the body and how it works that at an intuitive level I usually know what is wrong with me. I always believed one should be proactive with their health; after all, we know our bodies best. I did some studies in nutrition when I was younger, too, and I always believed the body has the ability to heal itself--this is why I never agree to invasive tests or invasive methods (whenever possible). I know there is a place for modern medicine in this world--and doctors can do a wonderful job with certain conditions, eg. heart transplants, mending broken bones, separating twins that are born fused together, etc. But when it comes to chronic or degenerative conditions medicine is still in the dark ages in many ways. The fact that doctors don't look at the patient as a "whole" anymore, and only look at the part of the body that's ailing is a big mistake. Anyway, I truly believe each of us has the power to heal--it may take a short time or a long time, but we can do it. And if we can't do it, then I guess our time has come to pass on. After all, one day we all have to go, right? So that's my fatalistic side, which is actually quite realistic--we all die at some point.

My mother ingrained in me the thought that my health was "delicate". Don't ask me why, but from the time I was young she always used to say to me, "You have delicate health. You're very sensitive." Unfortunately, at some unconscious level I believed this due to the conditioning I received from her. This has been a difficult pattern of thought to break; and to this day, it sometimes rears its ugly head.

By the way, it was I who diagnosed myself with pudendal neuralgia, and I only went to see the specialist to have it confirmed, which he did. But prior to this I went to a few other doctors and they had no idea what was wrong.

As for my moods, they are always up and down; one moment I'm in the depths of despair and the next I'm in high spirits and ready to take on the world. This has always been my personality. But then again, they don't call creative people temperamental for nothing