Pelvic Pain - Healed

It took me about three years, though I did a lot of stuff wrong. You can probably look through all my old posts and see the struggle.

If you’ve ruled out all the serious stuff (infections, tumors, etc) then just forget about it and move on. Chronic pelvic pain treatments are full of half-baked ideas with shockingly little science behind them. If you notice any inconsistencies in the pain, take note of that (it will often appear to be consistent but falls apart under closer inspection). I used to rationalize my inconsistencies and make excuses as to why certain things would hurt and others would not.

I wouldn’t even recommend reading a lot of TMS stuff or consulting with TMS Drs and therapists. I have no idea which theory or expert is even correct anymore and I’m not even sure it matters. I think maybe for some of us we are just prone to somatization and constantly have to be on the lookout (Alan Gordon had made this point once before and I totally agree).

Don’t be surprised if, once you beat your pelvic pain, you start to develop something else- like some old problem you never had for years shows up. It sounds completely ridiculous but it’s happened to me and continues to happen.

I highly doubt pudendal pain is ever coming back. It’s lost it’s ability to scare me. Last time I had a flare I laughed it off and it disappeared very quickly.

Just some general advice too that really applies to everyone: Try to eat healthy foods, get regular exercise, and find a good primary care Dr you can trust (rather than running from one specialist to the next). This has all helped me too.

I hope this helps- I’m not a good writer lol

 

Fantastic advise!
Dont let tms become another distraction. It can super easily suck you in, especially if you realize that tms is the culprit and not some fictious diagnose like the PN bullcrap.
Thats what happened to me, i beat the PN pain 2 years back after a few weeks of reading sarno and coming here, Today I dont even remember how the PN pain felt like, although 2 years back I was wishing it to be cancer and not PNE.
Tms pain serves as a distraction, you need to take away its purpose and live a more balanced life. Excerise, healthy diet, emotional awareness, living in the moment and not jumping between the past and future.
Any thing that makes you positive and happy, even weed can help.. basically anything that makes you positive and gets your brain away from your pain reality.

 

Hi Jason,
I was looking through your old posts and saw that you thought that your TMS was probably more to do with sensitization than due to repressed emotions. Did you find that to be the case in the end? If so, what particular things did you do on a day to day basis that helped you the most to cure yourself? (I ask because I don't think I've got repressed emotions - I seem to experience them fully in my body without having to journal etc.) Thanks in advance.

 

Yeah I'm the same way- I feel if anything, I'm too emotional. In the early days when I first got into this I did exactly what Sarno said- journaling, etc. and it did absolutely nothing. Then I started reading Lorimer Moseley, Dr Clauw, etc. who talk about Central Sensitization, where the brain still processes pain even after an injury has healed. Elaine Aron's "Highly Sensitive Person" takes it even a step further and fit me well too (like with the sensitivity to bright lights, certain sounds, crowded cities, etc). But none of the sensitization stuff can explain why, for example, I developed terrible chest pain shortly after getting rid of PN. Or why, after the chest pain was evaluated and determind to be nothing, I then suddenly developed terrible headaches and vertigo (also evaluated and determined to be nothing). There must be some sort of strategy at work here to keep me distracted or afraid.

Some of my symptoms were clearly tied to an event but I didn't see it at the time- for example, five years ago when we moved into our new house, I developed terrible ear pain and fullness whenever I was inside. I insisted I must be allergic to something in the house. After the ENT could find nothing wrong and literally told me I was getting ear pain because I was probably stressed out and unconsciously clenching my jaw, it vanished almost overnight. I was clearly just stressed over the move, but I didn't see it at the time. Same thing this past June, when I developed dental pain right before a trip that I was worried about (it disappeared after the long flight was over). Even right now, I'm currently dealing with some allergy symptoms- is it really coming from our newly adopted pair of rabbits? Because we had a pet rabbit for ten years before that, and I never had symptoms. But maybe only certain animals can give me allergies. Or maybe the high levels of mold spores outside due to record rainfall. See? It always gives me something I can sorta buy into. The primary purpose seems to be fear.

The trouble with PN was that once I was given the all clear, it didn't go away because I found the Pudendal Hopeless forum, all full of stories of people like me who were told there was nothing wrong with them and all the tests were normal. And then you read that PN doesn't show on tests and there are only a handful of smart Doctors and PT's who know about the condition- only they can help you and oh, by the way, none of them take insurance either. (Seriously stay away from that place, if you've ever been there). And I had an initial injury just like Ezer that could "explain everything" (again, TMS always tries to give me something that has a semi-plausible explanation).

So there has to be more at work than just a brain sensitivity issue. The idea that TMS is fear and distraction does seem to make sense. The best thing to do is get it evaluated (especially if its a serious symptom) and then ignore it if nothing is found. It's why I said to find a good primary care Dr- one of the things they're best at IMHO is figuring out whether something needs to be looked at by a specialist or whether its nothing to worry about.

So day to day, how I got over PN was basically ignore it completely. Don't even try saying "today I am NOT going to focus on my PN" because that's like saying "I do NOT want you to think of a red ball" - what's the first thing that just popped into your head now? LOL Trying to figure out the how and why just fuels it. As I said before, I think some of us have brains capable of generating symptoms. Is it genetics? Childhood trauma? I have no idea.

Also don't fall into the trap of thinking you're "too severe" to be TMS- last year I was in nearly 10/10 pain and looking at a lifetime of disability and now I've been sitting here typing this with zero pain...

Hope this helps.

 

Jason, Thank you so much! I love the example of the red ball. I was reading Claire Weekes and She talks about ‘floating’ and ‘accepting’ and how that is really different from ‘putting up with the pain’ and trying not to think about the pain(red ball). I think my outcome independence has become a lot better the past few weeks, but when my pain is still as high or even more after more sitting or activity I get really down again and into negative thinking (this is never gonna work, my life is over bla bla) May I ask, How did you deal with that? Thank you so much, it means a lot! Sarah

 

Thank you very much for your reply, Jason. Everything you’ve said is really helpful and supportive.

I always think that the way the symptoms pop up one after another is like the fairground game ‘whack a mole’…As soon as you beat a 'mole'/symptom down another takes its place. And you're right, the sensitization stuff doesn't explain why those symptoms suddenly pop up after other symptoms have disappeared and there has to be more to it - As you say, some sort of strategy at work to keep us distracted or afraid.

Yes, it certainly does. At another forum member's suggestion, I’ve recently been telling myself regularly, ‘I am safe’ (particularly when I realise something or someone is perturbing me) and I’ve been surprised how much better it’s actually making me feel during and after difficult situations; I seem to brush them off more easily and forget them more quickly.

Perhaps I shouldn't say this, but I do believe it is possible to develop an allergy to their dander and/or saliva, albeit it's probably not the case for you. My own experience of this is that we had pet cats and I was fine with them for years, but then I developed allergy symptoms and had skin prick tests and they proved positive for (tree pollen and) cat dander allergy (at the same time I was tested for a load of other possible allergies, so I didn’t know which skin prick test substance was which)…However, that said, I do absolutely understand and agree with your point about there always being something 'physical' of one sort or another that we can blame our symptoms on. Looking back, I've been doing that with all of my symptoms over the many years that I've had chronic pain and fatigue.

Unfortunately, a while back I did go to the ‘Pudendal Hopeless’ forum as I have pn-like pain (my nickname for it was similar to yours, i.e. the ‘No Hope’ forum). Fortunately, I too saw Ezer’s postings on there and, although the ‘feel your emotions’ approach that worked so well for him hasn’t (so far) worked for me because I do feel my emotions in my body intensely already, I saw that his voice was one of sanity and reason. The evidence he produced for why the decompression operations don’t work was overwhelmingly convincing imo (so much so that the administrator at one time banned him from the forum, as she strongly believes that her PN was cured by surgery).

It would be good to know why are brains are like that, wouldn't it? I had evidence the other day that my brain generates symptoms…I was reading someone’s description of their gut problems – and the next thing I knew I was experiencing the return of some of my stomach/gut problems.

That’s so good to hear – very encouraging, especially as I, not only have pn-like pain, but I also have so called ‘fibromyalgia’ and hurt and ache from head to foot.

Many thanks once again for taking the time and trouble in replying.

 

Hi Sarah,
Could you point me to the best place to read where Claire Weekes talks about 'floating' and 'accepting'; it sounds interesting and helpful.
Thanks in advance.

 

Oh trust me, I know that all too well. I had the exact same problem. Just remember that things can change rapidly in life, especially with health. I know someone with cancer who was given a very grim prognosis but is now in remission. There are stories all over the place (not just on this forum) of people who got out of chronic pain (and even things like paralysis) all the time despite very poor prognosis from Doctors. So just because it seems dire doesn't mean it really is.

Yes, I'm aware it is possible. Of course that's in the back of my mind- "What if I am allergic and we need to get rid of the pets?" Then my wife and kids will be really upset with me and I'll miss having our rabbits." If it persists, I'll get allergy tests. But I'm also aware that there's a high probability this is TMS as well. In my teens and early 20's I had allergies, asthma and an unexplained chronic cough... treatments never worked. This was before I knew about TMS, but one day I just stopped taking everything and didn't care anymore. Then my daily nonstop allergies and chronic sinus issues just... stopped. The only time I have problems is about a two week period in April when oak pollen is out. It's also very consistent, unlike what I'm dealing with now. We'll see how this goes. I should also mention that nearly everything I ever had started with an incident to explain it (even my tooth pain last June started when I bit too hard into a fork).

The entire three years I had PN I basically had no other symptoms. All the other stuff I had over the years (and I could fill up the entire post with this) was gone. There's probably old posts of me saying things like "oh all my previous stuff was TMS but THIS problem seems real because it won't go away!" or "Oh if only this would go away I'd be just fine!" Unaware of the game of whack-a-mole I'd be playing once I got rid of it. I realized the reason I had no other symptoms was because I was so focused on PN I didn't need them!

I do this too. I'm quite capable of generating symptoms on the spot like this. Speaking of gut problems, during the whole pelvic ordeal I'd also get IBS-type symptoms. I blamed it on my "damaged" pudendal nerve. I don't have this anymore either.

I posted on that site too debunking that surgery as well as PT and chiropractic. There are several providers on there who clearly post fake reviews posing as patients. Me and several others have called out the owner of the site on this before. She bans (or threatens to ban) anyone who is skeptical. One thing I'll say about the whole feeling your emotions thing- I did realize I had a lot of regrets in the past (things I wished I had done but didn't), and I would say things like "oh if only my pain was gone my life would be perfect!" That was actually not true at all. I don't know how much this affected things, but I did realize I wasn't nearly as happy as I thought.

 

Hi @BloodMoon. I'm not @SarahR but Claire Weekes outlines the Facing, Accepting, Floating and Letting Time Pass concept in her little book "Self Help for Your Nerves" , Chapter 5 onwards. Although she primarily addresses pure fear and anxiety I've found her writing is very helpful in dealing with the fear and anxiety generated by TMS pain.

 

Thanks very much for that, @westb . I'll get a copy.

 

Someone had written a nice response to me earlier but now it’s gone. Strange.

 

Hi Jason. Thanks for sharing your story. I have read all your old posts and I could see you struggle.
My pain started just 3 weeks after my wife was diagnosed with cancer back in 2015 .
I am talking about burning pain on my genitals , sometimes bladder pain, prostate pain , anyway deep inside. I have done all checks and I stopped to see doctors for a year.
Last month I drove my car 3000km to my home country having minimal discomfort . Then I have spent a month over there meeting friends and keeping my self busy.
The depression lessened and pain became a little discomfort . I was at one point 90-95% better. When was better I wanted to forget all my past I was on that state of mind I didn’t care of symptoms and I could see the world as same before being ill .On my way back to Ireland just 50miles away my depression kicked again because I am associating Ireland and my job with pain.
Sleeping become again a problem and depression / pain went on the roof again.
Reading your post was very encouraging, I am trying from my bottom on my hard to move with live .
I could see that you didn’t visit this forum for over a year and I understand it’s common for TMS ers to not come back and forget the past.
My problem right now is frustration that I was good and I am back on symptoms.
Please could you tell me based on your experience those breaks of pain/depression are signals of being on the right path to recovery?
Thanks a lot and all the best!

 

I didn't get cured and then left the forum. I got cured because I left the forum. I look at it like this- it's not pelvic pain, it's TMS. For whatever reason, we have brains capable of generating physical symptoms and will likely be a long struggle. I'm in my mid-30's and looking back, I've had TMS since I was a teenager. Spending all day reading TMS books, articles, forums for that one crucial piece of advice that's gonna somehow fix it all is counterproductive. I did that too and it never helped.

I think treating TMS is very similar to OCD (which I also had years ago). The treatment for OCD is to not fuel it- if you have intrusive thoughts, the goal is to just let them be and not ruminate or do compulsions- in other words, don't ever engage it in any way. Trying to logically figure out something that defies logic is a waste of time. If you've been checked out by mainstream Doctors and they find nothing wrong, then there's nothing to worry about! You've already noticed major inconsistencies where the pain is almost completely gone. That happened to me too- way back in the fall of 2014 I was nearly pain free for weeks at a time. But I was still obsessed over why it would come and go, what's the pattern, etc. Of course it came back even worse then! I was so depressed when it came back. The trick is to lose the fear of it- even when I was pain free I was so worried it would come back. Now I don't even care if it comes back, because I know its not a real structural problem. Which is exactly why it probably won't- that symptom has completely lost its ability to scare me now.

Hope this helps...

 

Thanks a lot. I have learned a lot from you !
You are 1000% right !
I am using the forum when feeling very depressed and re-reading success stories over and over again .It’s not easy and you know that.
I want to thank you very much again for your valuable reply !
All the best for you and your family!

 

I do hope that it won't turn out to be an allergy and you'll be able to keep the rabbits.

Yeah, I saw those reviews; they were for a chiropractor with a big practice in London, weren't they?

That's happened to me too. I had a gallstones attack (15 hours of vomiting and diarrhoea and horrendous stomach pain) after which I suddenly got an excruciating pain in my right thigh (the latter being attributed to electrolyte disturbance caused by the vomiting and diarrhoea). The pain in my thigh was horrendous; I couldn't walk or weight-bear, so it rendered me bedridden for a month and even in bed it was hell as I simply couldn't move my leg without the pain sending me through the roof. When I gradually (and literally) got back on my feet, my pn-like pain had gone, but at the time I just thought that it was the imposed rest that had allowed my pudendal nerve to heal; I never dreamed that it had disappeared because my brain had been focused on my gut, gallbladder and thigh...The pn-like pain eventually returned again - many months later - and, so far, hasn't left me.

How did you deal with that realisation? Was it enough to purely experience the 'uh ha' moment or did you have to change things to help enable you recovery?

 

Congratulations Jason and great discussion. I have been pain free for close to 4 years now. In addition for close to a year now, I had no "new symptoms" or "symptoms imperative" manifestations.

If only the pudendal ghouls could take notice and not dismiss us as fraudsters.

 

Adyxon, you had a long painfree period. You will be painfree in the long run. You feel frustrated, but your body simply reacts to the emotional stress you experience. In a way our bodies are just accurate!

 

@ezer I saw your story on Pudendal Hope and I found my way to this forum about 6 months ago thank you but this is my first post. I am female and have MRI showing mild inflammation and enlarged veins around Pudendal nerve but nerve itself seemed ok (as well as Pelvic Congestion Syndrome and Pelvic Floor Hypertension). Does TMS still apply to me? If so, why do I have inflammation? Do the enlarged veins mean nothing? Not pressing on nerve? Since I had no improvements since reading the books and trying to feel emotions (I am slightly worse), makes me think this is not for my situation?

If anyone else has information, please comment, I very much need help.

 

Almost a year pain free now!

@BloodMoon
The allergies are gone too- it most definitely was not the rabbits.

@Clarity
Of the very limited knowledge I have, I had read that pelvic congestion syndrome is another one of those things like herniated discs- many women have it show on an imaging test but have no pain from it. What type of test did you have- was it one of the "pudendal" MRI's from Filler or Potter? If so, I'd ignore that and ask your primary care Doctor what they think.

 

That's wonderful on both counts! I'm so glad you're doing so well and that the rabbits won't be needing a new home.