Is this pudendal neuralgia or TMS? Can I heal?

I'm a 42 year old woman who is active, happy, and youthful, though admittedly I have had a very stressful spring/early summer

I am hopeful some of you can provide some insight to my situation. After a mid-low spat of back pain (brought on, I think, from doing some skipping in an exercise class, on cement while in bare feet), I developed a UTI, though it wasn't found to be bacterial. I took antibiotics for a week, it felt cleared up, but a week later seemed like it was back -- so I did another round of antibiotics.

During the second round (and my apologies, this is TMI), I developed a very sore/raw clitoris - I've never had this before and it took me by surprise. I suffered with it a few days, and then thought maybe it was a yeast infection concentrated in this one place (from the earlier antibiotics). So, I treated for yeast infection and I'm now satisfied I don't have a yeast infection (I have zero symptoms of one).

The clitoris pain is distracting, but what is far more alarming to me is that my entire vulva region (including the clitoris) seems "numb/dead" -- like I have no sexual arousal at all, and it seems like the clitorial nub has shrunk. Nothing in that area gets engorged with blood, arousal etc. and I'm having trouble feeling like my mind is connected to this part of my body.

My ability to urinate and my bowel control seems totally fine. I've done a lot of "active release" of the fascia around my hips, IT band, and am working on my piriformis.

I'm also able to engage my pelvic muscles, I think, though the little muscle or nerve that lifts the clitoris hood seems "dead" as well.

This is all scary for me and I don't know where to turn. I went to a chiropractor but she didn't really address the sexual issue.

My boyfriend is back this weekend from a long trip away and I'm sure we will want to have sex -- but I feel like my body is unresponsive and my vaginal muscles may be compromised as well. We've always enjoyed a great sex life so this is unexpected and I'm stressed that I may never bounce back.

I have a history of TMS symptoms and cleared a major spell of back pain/sciatic in my early 20s through Dr. Sarno's work. I've been trying to apply his methods to this situation,but it seems maybe different?

Is it just TMS and I should relax? Can "dead" clitorisis and sexual parts rebound and become "alive" again?

I don't want to get a diagnosis of pudendal neuralgia as having injections and surgeries etc are not a road I wish to go down.

My body is otherwise healthy and I have good movement and range, etc. Not a lot of back pain, maybe a bit in my left glute and low back/SI area.

Any insight people here can share would go a long way to help me.

Thank you,
Moksha Moksha

 

So, your bladder symptoms could be similar to what they call "interstitial cystitis" or the newer name, "painful bladder syndrome". It was once believed to be an autoimmune thing, but for most people, it doesnt quite add up. My long term bladder pain is definitely TMS, and so is my pudendal neuralgia. I've had all the sore feelings you describe, though not the "dead" feelings. However, i'm sure it can happen. So this might be controversial to the TMS crowd, but many people have negative thoughts on physical therapy. Honestly, i've had both positive and non-results. Like, my wonderful PT is able to loosen the tense muscles temporarily, but it always returns. That's because she's only addressing muscle tension, but not the pain signals that come from the brain. However i do know that a recurring spasm can cause some of the issues you speak of. One time i attempted to do my own PT, and i accidentally jabbed my finger right into the pudendal nerve from the inside. This set off a horrid flare that lasted days with no end. I went to my PT and told her i did something bad. She went in internally, and released a spasming muscle and i got immediate relief. I had no more pain for years. It returned almost a decade later from a different trigger. So if you have the means to see a pelvic PT, it may help. Worst thing is that you pay for something that doesnt work.
In the meantime, like many people with chronic pain, i shied away from activity because i worried "worsening" the pain, and instead, it did a bad detriment to my mental and physical health. I also avoided sexual activity. Now for the most part, i continue to do all the things i love (unless in a very terrible flare) because avoidance only reinforces the "i'm broken" signal in the brain. Keep in mind as you try new things, dont approach them with worry. You need to approach them with confidence and joy. Learning to do activity while not fearing pain after, is very difficult. You almost have to go against your own insticts. For me though, that's how i got much of my life back. i stopped the obsessive "before and after" care when i did things....i just did things as if i never had the pain in the first place.

 

Thank you so much for your support, Nicole. Can I ask ("woman to woman") if you ever had clitoral pain, and if so, did you feel it was effected by the nerve? Did it subside, and did you regain sexual sensation?

 

yes, usually it felt like an annoying electrical pressure, or almost an uncomfortable arousal. Any part of my PN can get affected, from sacrum, all the way to the dorsal root. When the uncomfy arousal happens, i use my tens unit. I put the electrode on the pubic bone as low as i can, right above the "crack" if that makes sense. that blocks some of the uncomfortable feelings.

btw, i never had lack of sensation, if anything, i had "too much".

 

I know this post is old, but I have a similar story. Did you ever recover?

 

Moksha - I have been down a very similar road!! I developed what I thought was a UTI about a year ago...I held off going to the doctors because it was mild (no burning, mainly just frequent urination), but then it kept recurring. I was worried I was damaging something down there by letting an infection persist. When I finally did go into the doctor, no type of infection was found. Shortly after that, the discomfort ramped up again but this time it was very localized to my clitoris. I went to the doctor again, had tests for a yeast infection, STDs, BV, etc. and all came back negative. They had no answers for me.

My pain (sometimes I don't even think "pain" is a appropriate...more a sensation or discomfort...an awareness) appeared on a cycle. It would become very intense for a few days, then I'd have some reprieve, but it always came back. People who have not experienced clitoral pain/discomfort do not know how truly uncomfortable it can be. Something about it feels very deep and central in our bodies and it cannot be ignored. I felt like I was going to go crazy if I had to keep enduring that sensation. Eventually I started reading all about pelvic pain (the book A Headache in the Pelvis gave me a lot of hope), and I used that book to begin trigger point therapy, stretching, etc. I had fears of pudendal neuralgia, interstitial cystitis, even PGAD. But I was lucky enough to stumble onto TMS, and I learned through reading many books that those are all TMS equivalents. So even if a doctor diagnosed me, that did not mean I was incurable, even if they said I was. I stopped worrying about possible diagnosis.

Sorry to ramble about myself, I just know it's comforting to hear similar stories... through TMS work, I HAVE seen improvements. I 100% believe my symptoms are TMS, and I have faith they will continue to get better. The biggest jump in progress came when I finally let go of the physical treatments I was doing. That was giving credence to the symptoms being based in a physical issue. I also think practicing outcome independence has helped me immensely. I'm still on my journey, but I have seen progress and I hope that can give you some assurance that this will get better for you too.

One thing I use every day to make progress is to ask myself in any given moment if what I am doing (or not doing) is based on a fear that I have. If it is, I do whatever I've been avoiding, or stop doing whatever it is I thought was keeping the pain at bay. (e.g. I avoid going to the bathroom because I fear I'll have to go again right away - I also struggle with frequent urination; I avoid crossing my legs because I feel discomfort in my clitoris, I avoid tight clothes...I do the opposite any time I recognize these fear-based actions).

 

I am so glad to read your reply on this post! What you described is how I feel. It is an uncomfortable feeling in my clitoris and it sort of radiates down my right vulva and just aches. I also have weird electric shock pulsations that seem to happen mainly after I urinate or perform certain activities. This has led me to fear going to the bathroom, which is a major avoidance behavior for me. I also sometimes am afraid to even exercise or move after sitting for a while because I’m afraid I will feel that uncomfortable pulsating. It is not painful, just very unpleasant and scary. It all started months after being treated for a UTI, the only one I’ve ever had. I needed several antibiotics and it occurred during a traumatic time of my life, which also involved an emotionally abusive relationship. As in your case, all of my repeat cultures and testing were negative. I saw a urologist, gynecologist, and infectious disease doctor. Everyone said I was fine, yet I feel nothing like my old self. I did used to have urgency, frequency, and a full bladder sensation, but luckily, that all went away. I know my fear of never feeling normal again is probably perpetuating my remaining symptoms, but I am still afraid that I might have pudendal nerve damage or something else that is being missed. I still long for a magic pill I could just take to fix me back to how I used to be before the UTI. I feel like I am just a shell of my old self because of this. I’m in a wonderful new relationship, and I feel like I won’t ever be able to enjoy myself fully because this consumes my life. I wake up every day hoping it’s gone, and then I go to the bathroom and have a spasm, or I wake up and feel the aching begin. I feel it all day long and I don’t even remember what it’s like to not have to think about my private parts. I am glad to hear you are doing better. I think I still have to try harder to believe this is TMS, and maybe I’ll see an improvement. I just feel like it’s not that, as if I’m different than all the other success stories I have read.

 

I promise you that I felt that exact same way - that my situation was different from everything I was reading on TMS. I've noticed it's almost a rite of passage in the TMS community to fear that you are the one that is different and that will not get better. Persevere...step 1 is doing what you need to believe this is TMS. It also helps to change the way you think about this and recognize that what you're doing is an incredibly difficult thing and it will take time, patience, and persistence. We are trying to change habits of thought, associations, and fears that we have so mindlessly acquired over the years.

I also had that pulsating, and fasciculations all over my body but primarily in my vulva area. AND that particularly sensitive area to the right of your clitoris - I've had that too...to varying degrees. I'm right there with you.

It also sounds like you have some emotional traumas in your past that may be contributing to your TMS expression. Making sure you behave counter to your fears on a daily basis can also be applied to your thoughts. Is there something that makes you really uncomfortable to think about? Thoughts that scare you? Dig into those. You say you wake up every day hoping you wont feel the discomfort. Try waking up and saying "even if I feel it again today, I can still have a good day." Give it less power.

Most importantly for me, and what I think will help you, is to do the things that make you feel like yourself. When I went through all of this, it was also as I was getting out of a traumatic phase of my life. I already didn't feel like myself. It really has only been the past few months that I'm recognizing that I'm back to cooking, reading, working out, being able to calm myself enough to enjoy a night staying home and watching a movie. My life is getting fuller again and I still fixate on my symptoms when they're here but it's less every time. I think many of us get stuck thinking that our pain/discomfort needs to go away before we can start living our lives again, but the opposite is the path to recovery. We need to start living our lives and we will start to heal.

I'm so sorry you've had to deal with this, and I'm glad my similar experience can provide some solace.

 

It is so nice to have someone to talk to that actually has similar symptoms to my own. I have had a few pretty good days. I wish I could be more thankful for the progress I have made, but I still keep getting angry anytime I have a relapse, no matter how minor it is. For instance, I have gone several days without feeling the pulsating sensation. I still had the ache in my vulva and clitoris, but it’s definitely tolerable. It’s just very uncomfortable like you said. I can’t seem to get my mind off of it because I still feel like I need to figure out why it’s happening. Surely there has to be a tight muscle or something inflaming my tissue that’s making it ache. I do feel like I need to focus more on re-programming my brain to just not feel the sensation, regardless of the cause. But I have always been a problem-solver…and it does not help that I’m a nurse. I try to look for proof that it’s TMS— for instance, today at church I was thinking about how I used to have spasms when I would stand up in my pew. As soon as I thought about it, I had a spasm! I know that has to be a big indication that my mind is so powerful it can create the symptoms I fear. And it seems like when I get up to go to the bathroom sometimes in the middle of the night if my cat wakes me up, I don’t seem to have any symptoms, because I just go lay back down and go to sleep. I even feel like I empty my bladder better at those times, probably because my muscles have been relaxed in my sleep. It is like I am constantly body scanning myself in my subconscious while awake, even when I’m trying to stay busy and not think about it. But when I’m sleepy, and not focused on it, it does not seem to happen as often. (It does sometimes, though)! That’s what makes it so difficult, because there is no rhyme or reason to this. Sometimes I’ll have the ache and no spasms, other times I feel a light burning sensation but no aching. It just keeps changing. I guess more evidence that it is TMS. How is your progress coming along?

 

I know how you feel! Whenever the discomfort returns - either clitoris/vulvar discomfort and/or urinary urgency and frequency - my very first thoughts are always fear based and doubtful - is it worse? Is it here to stay? Maybe this time it actually is a UTI or I injured myself. Every time without fail, I catastrophize a little.

I’m recognizing that every step seems to be about acceptance in one form or another. I started to accept that those thoughts are inevitable, but that doesn’t mean that I can’t reject them, or rationalize and reach a more positive mental state on those days. My favorite “mantra” is ‘healing is not linear, I’m getting better every day’ … I find myself saying that a lot because it helps me remember that a bad day doesn’t erase progress, negative thoughts, a flare in symptoms…they’re OK. You’re not back to square 1 even though it feels that way sometimes.

I know what you mean about being unable to get your mind off it, it’s in the background no matter what. I’ve only recently started to feel like sometimes I forget these symptoms are a reality for me. Engaging in things I enjoyed and having something to look forward to really helped…have you tried meditating? For people like us, I think it helps because it’s the practice of sitting with your discomfort and letting it be, emptying your mind. Even if my symptoms are still there after I meditate, I almost always feels better mentally and emotionally.

I actually have recognized multiple times where my thought of the symptoms preceded them, and it’s so annoying! The other day I randomly was worried about a UTI…just because my mind is dumb sometimes and decided to be anxious about that for no reason. I had the worst symptoms I’d had in a long time that day. The next day, completely better, my anxious mind had moved onto something else. To me, it is frustrating, but only more proof.

Overall I really have been doing well. Time really is on our side here in my opinion because every time the pain comes and goes again, every time I managed it without too much doubt and fear, it’s evidence that soon enough I’ll feel ok again, even on the bad days. I’m starting to trust the recovery more… the symptoms actually flared recently. I think due to a potential big life change I am nervous about.

Definitely hold onto how you feel when sleeping. I’m the same way, no symptoms when sleeping or when waking up at first. In the earlier days, that was some of my main proof that this was TMS. I thought the same about muscle tension being lesser at that time. What made me confident that wasn’t the case for me was the significant progress I had after I stopped the trigger point release therapy and daily stretching. If my problem was muscles, my symptoms very likely would’ve worsened but I believe they improved after that because I spent less time focusing on them.

I also wanted to say, try thinking about reprogramming your brain to be OK with the sensation rather than not to feel it. The latter goal will mean any sensation feels like failure to you. If you focus on being ok with it, realizing it is not so bad after all, then your placing the parameters of success in your mind, not your physical state…if that makes sense. Something I’m definitely still working on myself. We will both get there!

 

I admit I do struggle with the consistent emotional work...I have begun working on it multiple times but it seems harder for me to keep up with than other work like meditation, outcome independence, somatic tracking, etc. I have always been a very non-reactive person...skilled at minimizing those feelings or distancing myself from them enough to function. I know that is a quality many of us on here share, but I have found that deeply engrained tendency I have in response to my emotions makes it difficult to even access my emotions enough to begin to identify, feel, and process them. I have tried journaling, but I always feel far too self-aware and that my mind is still dictating what I write more than how I actually feel. That is not an excuse, and you're 100% @JanAtheCPA, something I need to work on more to heal.

What particular methods have you found most successful? I need to find a way to get past the literal "shut down" I experience when emotions begin to surface.

 

Some suggestions:
When trying to journal look for words that don’t trigger a “shut down” that you tell yourself what journaling is. “Emotions” might trigger it, but perhaps “I’m gonna write down what pissed me off” doesn’t.. in other words, find a way to make it less of a deal to your mind.
Your default protection mechanism is to shut down - it’s simply mis-guided fear from the brain. I imagine it like a lever that some invisible cartoon force won’t allow to shut down. What happens when we watch a cartoon and the character gets foiled over and over? We cheer him on! Sometimes we just laugh with and smile his stick-to-it-ness (totally a cartoon word) to try and try again!
Try taking the heaviness out of the equation. Congratulate yourself every time you pick up the pen and paper no matter what happens.
When an emotion comes up and you sense it, even if for a second ANY emotion: don’t label it, just mentally give yourself a high five!!
Then after awhile (days, weeks, months..) see if you can notice more often, or that you notice they hang out longer. Begin to notice, lightly and briefly with a sense of curiosity, if you can notice any physical sensations with the emotions. A tightness of throat, clenching of hands, a change in temperature, the feeling of your skin flushing can be subtle, but if you aren’t used to recognizing them, you don’t notice. Just welcome these and again, congratulate yourself for noticing.
You are basically desensitizing your mind to feeling these things is safe.
Have fun with it! The day I internally high fived myself for getting (internally) angry at my husband for leaving cupboard doors open AGAIN sent me into fits of laughter afterwards! I just stood there and felt the physicality of being frustrated and “hot headed”, over something so ridiculous.. in the past I would have judged that anger.
It’s still not easy, but if every once and awhile I sense an emotion it’s better than never noticing.

 

Thank you for the guidance! I think I struggle sometimes with what can feel like opposing concepts of trying to "do something" when the idea of TMS recovery is letting go/acceptance. Your feedback makes sense to me because more than anything, the primary 'goal' is to simply notice more, and be accepting rather than judging.

I struggle sometimes with feeling very 'dark'. It's the only way I know to describe it. Like danger is looming/inevitable, the world is a scary place, and I am weak. It is a sort of backdrop to my reality at that given point in time, more than an identifiable feeling. But I know when I feel that way, it is an indication of exactly what you said -- I am overly sensitized to danger, I need to regain a feeling of safety in my own mind and with my own emotions. Sometimes nothing is even wrong, I even tend to feel it when something exciting is going on...I'll work on this. Thanks again.