Pelvic Pain - One Sided

[tshepherd121]

Hey Guys,

I posted a few months back and the post did not gain any traction unfortunately. I thought I would try again on behalf of all the pelvic neuralgia sufferers out there (hate the word sufferer).

The goal of this post is not to describe past trauma... we all know we've had that. Being in this position yields a high population of people that have been through the ringer. The goal is to shed some light on pelvic pain conditions. I would venture to say pelvic pain is in vogue now, but there are few discussions on this forum about it.

I have one sided pudendal nerve sensations. It doesn't move, but can cause a range of symptoms from pain while moving, sitting, urinary frequency/burning, sexual dysfunction/burning, anxiety, ect. Even on the best of tms facebook groups, pelvic pain posters are dead-set on Pelvic PT. They are convinced that combining PT and TMS work is the solution. Such thoughts really put me back in terms of TMS progress. I did PT for a couple years. I am mixed on the results as I was working 60-90 hour weeks and was dealing with a lot of life stuff that made doing the exercises difficult.

Thus, I gave up PT, not really seeing how light stretching and massage can solve such a complex issue. It seemed like just a bandaid that would be torn off later that day as soon as I went about my normal life. As a ex-collegiate soccer player, we never used foam rolling and massage to correct an injury, we used them as tools for injury prevention in warm-ups, to break down lactic acid and get us ready to move.

As such, is there anyone in the TMS community that has solved pelvic nerve pain issues with solely tms methods. I really want to get back to lifting weights (squats, deadlifts, compound movements). It was a huge part of my identity, and I've been dealing with pelvic issues for the better part of 18 years (4 being severe), I'm 27 now.

I look forward to any meaningful discussion we can all have!

 

[Mala]

I agree that we hear more about pelvic pain now but whether that is because there is a higher incidence or whether ppl are talking abt it more is not clear. There are many discussions not only here on the forum but I have listened to podcasts relating to pelvic pain on Curable, on Nicole Sachs website & there r many other links. Here’s one example.

https://www.listennotes.com/podcasts/the-cure-for/31-episode-31-pelvic-pain-gcwIS0bTPkG/

As for pelvic PT, it can help many in conjunction with TMS especially in the initial stages. Just hearing that ‘it’s just tight muscles’ can alleviate much anxiety for many ppl who think there may be something serious going on & be a very helpful tool in TMS recovery. As can meds.

Anything that can help reduce stress & alleviate anxiety in my opinion is useful & shld be used. Here’s a link to a story of someone who used other modalities along with TMS to cure pelvic pain

https://www.google.com.hk/amp/s/medium.com/amp/p/fac4cf66d1d7 (How I Finally Beat Chronic Pain and Got My Life Back)

TMS May be but one factor in pain . If pain has been for long then other factors come into play like neural pathways, & experts like Lorimer & Mosley take a larger biopsychosocial model of pain which is well researched & documented.

 

[tshepherd121]

Hi Mala,

Thank you for the reply and the very useful information!

I did pelvic PT on and off for 3 years and found that with nerve things, they wrap a lot of fear in the treatment. Could be just a me thing, but they immediately start to limit the activities you can do, which, for a chronic pain issue, can really set you back. I do agree that it can be helpful in the initial stages, they do provide lots of hope. However, they tout that it can take 1-2 yrs to see results, and that seems counter-intuitive to what PT should provide. A good PT should try and get you out the door as soon as possible.

I am just getting confused, because Sarno said PT should not be relied on because it puts to much emphasis on the structural. From my experience on Facebook forums and this forum, the other pain communities seem to grasp the concept of no PT a lot more than the pelvic pain communities. Just an observation, but I also rarely see a success story for Pelvic Pain on here... There are a few great ones, but they are older.

I believe the main thing stunting my recovery is that I cannot choose a side. Nerve damage is a constant fear of mine, as well as never being able to go back to the activities I love. Further, not being able to be in a relationship/make someone else happy due to the fact that it is hard to be happy with constant pelvic nerve pain, limited activities, and a loss of self.

I believe we are all twisted and mangled in certain areas. Some of us just don't hurt. So I am starting to heavily lean on the learned nueral pathways camp that Dr. Schubiner resides. I fear that use of the TMS Forums and FB groups exacerbates and strengthens the learned pathway, as I am constantly inundated with individuals who are new to the process and utilize physical treatments.

 

[Mala]

There is no doubt that we have Sarno to thank for being steadfast in his conviction that pain is a mindbody disorder & that repressed emotions can cause consistent & persistent pain.

Sarno put a lot of emphasis on NOT doing PT, NOT taking meds, but I feel that this puts even more pressure on some who would not benefit from such a rigid approach as it almost feeds into their already perfectionist tendencies. Some ppl get better just by reading a book, for others it may be journaling, perhaps seeing a TMS therapist or just plain ignoring the pain. This does not however mean that meds & PT & massage do not have a place in Mindbody healing & its very sad that more ppl don't mention here what other modalities they have used in their healing journey.

Giving Sarno his due credit what Butler & Moseley have done is that that they have 'Explained Pain' by doing lots of clinical research and using multidisciplinary pain treatments which include medical options, looking at emotions, thoughts & lifestyle, patient history etc which has helped sufferers, clinicians and care providers to treat pain. Here's a talk by Moseley which talks about Pain, the brain & yr amazing protectometer, a must watch for anyone in pain.

Mala

 

[Lizzy]

Mala,
Thank you for that talk!! I've watched Moseley before, but had not heard this yet. I'm having a pain flare up that started at the beginning of covid arriving in my community. This information has gone right to the idea of the risk assessment my brain has done. My neighbor has three cousins that died and a friend of a friend, who was 60, died. My husband is 62. Is it any wonder my brain is convinced that the dangerous situation is super dangerous. Amazing addition to my understanding of what is going on with me right now.
Thanks, Lizzy

 

[Mala]

Lizzy surround yourself with as many SIMS as you can.

'We will experience pain when our credible evidence of danger related to our body is greater than our credible evidence of safety related to our body. Equally we won’t have pain when our credible evidence of safety is greater than our credible evidence of danger (Moseley and Butler 2015, pp14)'.

Here's a link on what to do

Good luck

Mala

 

[jamejamesjames1]

@tshepherd121

1-2 years????

I am thinking about starting PT in conjunction.

I've only been suffering for four months but seems like forever. I can't go two years!!!


I did have pelvic pain before and it seemed to fade after around 18 months but I never had competent physical therapy

 

[Vertigo22]

Hey just thought I'd chime in from personal experience about pelvic PT.

The tl;dr before the post -> pelvic PT didn't directly help (I doubt it can if it is TMS) but it had some indirect benefits for me.

I've been suffering from CPPS and associated symptoms for just over three years now and am thankfully in the place where I have more good days than bad ones (and recently went nearly a full month without symptoms before a flare up - woohoo).

I did pelvic PT for about a few months, roughly a year after I started having symptoms (so a year back) and making literally no progress at the time. I was lucky that I very quickly found Sarno's work and wanted to believe but was having major issues living with the knowledge of what he says is going on. I guess my grad student brain kept questioning it constantly and not having an easy time fully accepting it.

For me, part of the reason I went to PT was because I wanted there to be a structural problem that could easily be fixed (like I said, I constantly had doubts), but with my experience there it actually helped reinforce that it was TMS.

On the first session, my PT (who specializes is male pelvic floor pain and associated symptoms) drew a diagram with one part being "physical" and the other being "emotional/psychosomatic" and she explained that there is a whole range of cases that fall in one side or both, some fully physical, some fully psychosomatic, etc. The key is to figuring out where your case was.

She was able to explain to me very logically how emotions, often trauma, affect our bodies and can get pushed down into us where they cause pain. While she didn't use the words TMS she was blunt and said anyone who has had pain there for more than 3 months can pretty much count on it being either mostly or entirely psychsomatic. So it's more or less the same line of thinking.

While the PT routine didn't relieve the pain more than very short term (like for a day - which gave me a lot of false hope), it did help me understand my body a whole lot better and how things are connected.

Prior to PT, I had basically no understanding of my pelvic floor muscles, or how to visualize them or even understand what was hurting at times (some of my symptoms were more dull, vague pains than the usual highly specific burning sensations). I couldn't understand why some parts of my body hurt, because I didn't understand how they were connected. Going to see my PT helped me understand the connections not just between muscles but also my mind to them.

Now when I'm hurting, there's definitely WAY less fear and uncertainty about it. I can more confidently understand where I am hurting, know that it's the same related issue, and remind myself that yes in fact it's just old TMS acting up, and be less fearful of the pain and less fearful that it will be permanent or all the other things that keep it going on and on.

So, while PT didn't directly benefit me, the indirect benefits were very helpful. And getting over the uncertainty and fear was likely my biggest leap so far.

 

[tshepherd121]

Hey just thought I'd chime in from personal experience about pelvic PT.

The tl;dr before the post -> pelvic PT didn't directly help (I doubt it can if it is TMS) but it had some indirect benefits for me.

I've been suffering from CPPS and associated symptoms for just over three years now and am thankfully in the place where I have more good days than bad ones (and recently went nearly a full month without symptoms before a flare up - woohoo).

I did pelvic PT for about a few months, roughly a year after I started having symptoms (so a year back) and making literally no progress at the time. I was lucky that I very quickly found Sarno's work and wanted to believe but was having major issues living with the knowledge of what he says is going on. I guess my grad student brain kept questioning it constantly and not having an easy time fully accepting it.

For me, part of the reason I went to PT was because I wanted there to be a structural problem that could easily be fixed (like I said, I constantly had doubts), but with my experience there it actually helped reinforce that it was TMS.

On the first session, my PT (who specializes is male pelvic floor pain and associated symptoms) drew a diagram with one part being "physical" and the other being "emotional/psychosomatic" and she explained that there is a whole range of cases that fall in one side or both, some fully physical, some fully psychosomatic, etc. The key is to figuring out where your case was.

She was able to explain to me very logically how emotions, often trauma, affect our bodies and can get pushed down into us where they cause pain. While she didn't use the words TMS she was blunt and said anyone who has had pain there for more than 3 months can pretty much count on it being either mostly or entirely psychsomatic. So it's more or less the same line of thinking.

While the PT routine didn't relieve the pain more than very short term (like for a day - which gave me a lot of false hope), it did help me understand my body a whole lot better and how things are connected.

Prior to PT, I had basically no understanding of my pelvic floor muscles, or how to visualize them or even understand what was hurting at times (some of my symptoms were more dull, vague pains than the usual highly specific burning sensations). I couldn't understand why some parts of my body hurt, because I didn't understand how they were connected. Going to see my PT helped me understand the connections not just between muscles but also my mind to them.

Now when I'm hurting, there's definitely WAY less fear and uncertainty about it. I can more confidently understand where I am hurting, know that it's the same related issue, and remind myself that yes in fact it's just old TMS acting up, and be less fearful of the pain and less fearful that it will be permanent or all the other things that keep it going on and on.

So, while PT didn't directly benefit me, the indirect benefits were very helpful. And getting over the uncertainty and fear was likely my biggest leap so far.

Absolutely love your input here. I agree with everything you said.

I too got similar results from PT. Further, I had a PT tell me similar things about 'stress related tension.' I think the role of PT is just a round about way of getting the patient moving again and feeling safe. The added backing of a medical expert gives the patient the assurance that they are going in the right direction and are going to get better. All of the PT in the world will not work if the brain is stuck in the fear cycle however, and I think that is why I was having mixed results. Prior PTs prohibited physical activities and it made me feel scared and broken. I actually began to get worse in my second round of PT.

Since instituting the prohibited activities back in my life, things haven't gotten worse or better, so that gives me the assurance that I am on the right track. I am starting to see the inconsistencies in my symptoms. PT is definitely a good starting block to give you confidence moving forward, but it was more of a bandaid patch for me. The real work is the TMS route. Everyone is imbalanced and has tight muscles, they do not have to lead to nerve sensations and disfunction. Hell, from my time as a college athlete, I was always rolling out painful trigger points, but none of them disabled me or prevented me from competing in my sport. If i could go 18 years of competitive athletics, it makes sense that those issues were always there, but only decided to act up during a time of increased stress and life transition. Coming out of college, I was scared of the real world, lost identity due to retirement from sport, and not wanting to work in a corporate environment. Couple that with added life stressors (too personal to go into detail here), it is no wonder I was placed in such a position.

I now believe it was my brain trying to keep my safe from the anxiety (fear of a false future) and fear. In my current state, and during the duration of my PT, I was not living the quality of life I wanted. Always in fear of getting worse, tracking symptoms and remaining absent from my favorite activities. That is not the life I want moving forward. I am only 27, things will get better!

 

[jamejamesjames1]

I know mine is mostly somatic as I am able to get the pain to completely vanish most of the time when I meditate...after about ten minutes or so. It always comes rushing back as soon as I'm done.

I'm going to a PT on Wednesday just to hear what she has to say. Maybe if there are trigger points it can accelerate the healing.

I think my main sticking point is fear. Not fear of their being something wrong with my body but fear that these sensations are awful and how can I live a normal life and enjoy anything. And if it's tms that doesn't help much if I can't rid myself of it. I feel guilty about not enjoying an otherwise great life.

So yeah, not sure if mine is more emotional based, just not feeling safe with life, conditioning, or what have you.

 

[Vertigo22]

"I think the role of PT is just a round about way of getting the patient moving again and feeling safe. "

I definitely agree. It was seriously important for me to hear a professional authoritatively tell me that it was not-life threatening, not one of those other 100 things it could be, and that is not permanent, etc. That was definitely the first fear "hump" that I had to overcome.

"Not fear of their being something wrong with my body but fear that these sensations are awful and how can I live a normal life and enjoy anything"

^^ and this fear right here has been the harder one to overcome, to grow through. "Why can't I enjoy things like everyone else?" is often the first question that'll pop up into my head and start the spiral and by the end of the day or next day start me into a flare-up. But really, this is an unfair question to be imposing on myself -> I am enjoying life, it's just that little voice that says I cannot.

One other thought: I do feel that the other most important part of the process is to be willing and able to change. Our personality (could be workaholic, perfectionist, goodist, lots of other traits - certainly was in my case) are a major factor (if not the main) in what caused our body to pull the breaks on us. We can't just think "let's get over this quickly and go back to the way it was" because that attitude and the way it is caused this. It can be tough, but accepting when we're in pain and that it's a benign way of pushing us to change and then actually making changes to our life is the better way to go (and helps us stop fearing the fear). But of course, pain is scary by default, so it won't be a brief process.

 

[jamejamesjames1]

Oh boy! So I had my first Pelvic floor PT session yesterday and the muscles she hit (all external for this session) really did hurt quite a bit!

Was this your experiences as well @Vertigo22 and @tshepherd121 ?

I am in a confusing place in regards to how to proceed because I know obviously that stress / TMS is causing the tight muscles, but the tight muscles are probabally what's causing the pain?

I am inclinded to think to treat both, but many TMS folks seem to say not to do PT as it is a distraction and can make it much harder to heal and gives a way out for your brain, etc.

I'm sure my brain can eventually dissolve that tension without massage and stretching, but I don't know why I wouldn't do both to help that process. The TMS work is to help it stay away and prevent symptom imperatives of which I've already had some.

 

[Vertigo22]

Oh boy! So I had my first Pelvic floor PT session yesterday and the muscles she hit (all external for this session) really did hurt quite a bit!

Was this your experiences as well @Vertigo22 and @tshepherd121 ?

I am in a confusing place in regards to how to proceed because I know obviously that stress / TMS is causing the tight muscles, but the tight muscles are probabally what's causing the pain?

I am inclinded to think to treat both, but many TMS folks seem to say not to do PT as it is a distraction and can make it much harder to heal and gives a way out for your brain, etc.

I'm sure my brain can eventually dissolve that tension without massage and stretching, but I don't know why I wouldn't do both to help that process. The TMS work is to help it stay away and prevent symptom imperatives of which I've already had some.

The first few sessions of pelvic floor PT for me were quite possibly some of the most painful moments I have ever endured lol. It was like that whole area was on fire and the heat just got turned up to 11 (and I was sore as hell the next day). For the rest of the week, the pain symptoms went down slightly, which was nice, but I do agree that it can be a major distraction (like having a donut cushion, being careful how you sit, etc.) sine it's easy to get stuck in "it's only physical" mode and not address the root causes.

As for the pain, it's definitely a loop. It was lots of repression that caused it but now that it's there it's going back and forth - we clench because we're pulling in our stress / fear / anger, which causes pain to the sore muscles, and the sore muscles cause more fear and stress, which causes us to clench, etc.

My therapist did mention, as Sarno and others did in their books, that all the PT in the world won't make a difference if we don't make changes to our lifestyle and attitude - our personality, emotions, stress, mental state, all that is the root cause of pelvic floor pain and massaging it, while giving some nice relief and hope, doesn't address the root problem. I've made some changes in the year since - going on more vacations, not pushing myself so hard in my projects / work, accepting I don't need to be the best at everything, letting myself feel anxiety when I'm anxious, etc. and I am slowly changing.

That said, from my experience, I would still recommend people with these symptoms see a specialist like I did - especially one who understands the connections between the physical and the mental / emotional (like knowing this isn't just some sports injury that can quickly heal with a few stretches). While I haven't been back for sessions in about a year, it was the talks that we did at the start of each session that stayed with me the most - like knowing it's not dangerous, it will go away as I make changes to myself, I'm not alone, there are tons of other men in the same situation (many of them making progress), it's a very normal condition that's causing the symptoms, etc.

Also, if you haven't been to a therapist / psychoanalyst, I would strongly recommend that. Sarno and others have pointed out that in the case for some of us (myself, certainly), we won't be the ones where a quick realization about the condition clears everything up - that there's a lot of stuff shoved really deep down inside of us. I for one had no idea that a number of traumatic things that had happened to me were in fact trauma. I just repressed it all and had been carrying it with me for years, but seeing a therapist really helped me realize a lot and get some of it up to the surface (such as feeling emotions tied to them).

 

[jamejamesjames1]

@Vertigo22

Thank you for your feedback. I feel like I'm not alone in my experiences and that there is hope (although even though I know the symptoms aren't dangerous it really gets me worked up at times).

Given your name is Vertigo22, did you experience that as well? That was my very first TMS symptom and the only one other than this CPPS that scares me and lasts more than a few days.

 

[Vertigo22]

@Vertigo22

Thank you for your feedback. I feel like I'm not alone in my experiences and that there is hope (although even though I know the symptoms aren't dangerous it really gets me worked up at times).

Given your name is Vertigo22, did you experience that as well? That was my very first TMS symptom and the only one other than this CPPS that scares me and lasts more than a few days.

I actually used to have vertigo when I was young, haven't in years but I must have been thinking it when I made my account name lol. I actually had a whole slew of other TMS symptoms before this one that I never put together. I had carpal tunnel for years that eventually just went away because I stopped worrying about it and then forgot I had it. I also had / still have to some extent IBS and was getting peptic ulcers too. It's very common for men with pelvic pain and related issues to also have a whole slew of other ones before it reaches this point, with CPPS as something of a peak TMS symptom - because it's so annoying and distracts us so well.

Having been working through these symptoms and the associated emotional / stress parts for a few years, I can tell you that you will get better. It's hard, slow and it's scary and I still get moments of feeling helpless and like everything is crashing down, but there have been measurable improvements. Initially, it was 24/7 - first thing in morning last thing at night, and it was like a 6-7/10 pain + irritation. I thought my life was over. It was awful. Now, I get moments of 5-7/10 but they're not the majority. Most of each day I am actually alright, and it only really comes back when I remember it and get some fear almost as a gut reaction. You get to a point where those rare good moments become good days and the good days eventually outnumber the bad. And when you realize you've been sitting on the porch for twenty minutes just feeling happy and there's nothing but a distant itch, well moments like that are proof of what it is and that you're moving in the right direction.