Pelvic Pain or Pudendal Neuralgia... seeking Understanding and Support...

syriaka

syriaka

Newcomer
My Story
My name is Jean-Yves, I am 44 years old french guy, and I work as a front-end developer (mostly remotely) from a small town near Paris. Since last August, my life has been turned upside down by a series of physical and emotional events that have forced me to reconsider my daily routine. Before this, I had an active and fulfilling life: sports, cycling commutes, and quality time with my family. However, everything changed after a fall while skateboarding, which triggered unexplained physical symptoms.

Symptoms and Pain
Following this fall, I experienced progressive pains:
  • Discomfort / burning in the urethra.
  • Perineal tension.
  • Some difficult pooping at some times....
  • Urinary difficulties, accompanied by pain in the glans when feeling the urge to urinate.
  • Frequent and painful urination urges.
  • Involuntary erections.
These symptoms, coupled with growing anxiety, plunged me into a spiral of stress and anguish, with thoughts that were sometimes very dark. Each painful crisis reignites the feeling that I will never recover.

Medical Tests and Journey
Between August and September, I underwent several medical tests, all of which came back normal:
  • MRI (lumbar spine and pelvis).
  • X-rays.
  • Ultrasounds of the urinary tract.
  • Lumbar spine CT scan.
  • Urinalysis (ECBU).
Despite these results, the pain persisted. My general practitioner, noting the frequency of my consultations and tests, suggested I might be experiencing delusional hypochondria. She also prescribed an antidepressant (escitalopram) to help manage my anxiety, but I had to stop this treatment because it amplified my suicidal thoughts. Ultimately, she acknowledged the complexity of my situation.

After extensive research and consultations, the probable diagnosis is pelvic myofascial syndrome (or maybe CPPS ?), linked to muscle tension without direct nerve damage.

For a long time, I have had a background of hypochondria / anxious minded that has marked several phases of my life. In 2010, I went through a similar crisis with diffuse muscle pain, leading me to self-diagnose fibromyalgia, ankylosing spondylitis, or Saddam syndrome. At the time, these sensations were not linked to an accident but caused significant distress. More recently, since September 2023, I have experienced:
  • Real panic attacks.
  • Spasmophilia.
  • Gastritis.
  • Palpitations.
These symptoms led me to consult various specialists (gastroenterologist, cardiologist), but all investigations returned normal results. I began seeing a psychologist in 2010, initially referred by my physiotherapist. I saw this psychologist intermittently over the years and resumed therapy in 2024 after my fall to work on my emotions and better understand the origins of my crises.

A Heavy Personal and Family Context
These health issues are part of an already challenging context. For the past three years, I have single-handedly managed family responsibilities (housework, shopping, organization). In 2021, I had to handle the funeral arrangements for my bipolar sister, who tragically passed away in a fire. This loss, compounded by my elderly mother's fragile state, was a significant ordeal.

Additionally, I am the sole stable income in our household, with a mortgage to repay. Last June, we canceled the purchase of a house because I did not feel capable of taking on this project alone. We live in a small, quiet apartment, but this space weighs on me. In July, after returning from vacation, I felt a growing anxiety about coming back.

Finally, my relationship with my partner has been strained by my insomnia. She now sleeps on the couch, a situation that makes me feel deeply guilty.

Current Management
To move forward, I have implemented several strategies:
  • Physiotherapy: Weekly sessions focused on stretching and muscle relaxation.
  • Psychotherapy: Regular sessions to address my emotions and anxiety.
  • Journaling: Writing to explore the connections between my pain and my experiences.
  • Medication: Occasional use of Xanax to manage crisies.

My Questions and Hopes
Despite these efforts, progress is slow. Journaling, although freeing, brings up difficult emotions, sometimes exacerbating my depression. I question the balance to be struck between physical and psychological treatments. Nevertheless, I hold onto the hope that sharing my experience will help me find answers and support... and hopes to finally find a total relief in some weeks / months.

Thanks a lot to all the readers... sorry for this long post :/
 
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Hello @syriaka
You are do g many things to help yourself, and you have great awareness that you have many traits of people with TMS.
May I ask what kind of psychotherapy you are using?
My friend in Paris had TMS, (before we knew what it is!), his wife is even a psychotherapist! He took EMDR therapy because there is a mind/body component to it, and he is much better, even now when suffering some real physical issues, he is not overly worried about it. Now he is back to traveling the world and playing music. His anxiety is still fairly high, but much much better, and he is more in touch with all emotions.
Physiotherapy may or may not help you. If you are using it to get back to general health and with s mindset that it is not going to “fix” your TMS then it might be ok for you. If it increases your focus on what you can not do, how “I’ll” you are or physical discomforts or you still believe it will “fix” you, then it may not be your best choice. Focus more on your mindset and the psychological than the physical. Think about it.
Claire Weekes books are so helpful for anxiety. You may want to try and read them.
Insomnia is another TMS symptom. Call it out! Tell your brain you understand what is going on - simply a distraction from the difficult emotions that this situation is bringing up with relationships etc.
Remind yourself you are FINE, your body and brain are just interpreting there is something “wrong”.
Slow progress is progress. You may need to slow yourself down and look at how you have learned to think about yourself and how much pressure, expectation, perfection you are expecting. Meditation can really help with this (so can Claire Weekes).
Keep working on things while at the same time living life. You are progressing and that is very good!
 
Physiotherapy - if this is to purely relax and you’re doing it to feel good, continue it but if it’s to address your “physical” issues, I would stop. You’re only telling your brain that there’s something wrong with your body.

You seem to have a structure and routine. I can tell by your lists and the way you write. Understand that by doing too much or trying to be perfect with your healing may enrage your subconscious. Something to keep in mind. I’m very similar and am learning to let go of perfection in everything that I do.

What have you done fun recently? Something for yourself unrelated to healing? I’ve read many success stories and observed a large chunk of people get rid of their symptoms by not focusing so much on the symptoms and simply start engaging with life again. Yes sometimes it’s that simple.

I also agree with @Cactusflower about mindset.

You can do this and best of luck.
 
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Cactusflower said:
Hello @syriaka
You are do g many things to help yourself, and you have great awareness that you have many traits of people with TMS.
May I ask what kind of psychotherapy you are using?
My friend in Paris had TMS, (before we knew what it is!), his wife is even a psychotherapist! He took EMDR therapy because there is a mind/body component to it, and he is much better, even now when suffering some real physical issues, he is not overly worried about it. Now he is back to traveling the world and playing music. His anxiety is still fairly high, but much much better, and he is more in touch with all emotions.
Physiotherapy may or may not help you. If you are using it to get back to general health and with s mindset that it is not going to “fix” your TMS then it might be ok for you. If it increases your focus on what you can not do, how “I’ll” you are or physical discomforts or you still believe it will “fix” you, then it may not be your best choice. Focus more on your mindset and the psychological than the physical. Think about it.
Claire Weekes books are so helpful for anxiety. You may want to try and read them.
Insomnia is another TMS symptom. Call it out! Tell your brain you understand what is going on - simply a distraction from the difficult emotions that this situation is bringing up with relationships etc.
Remind yourself you are FINE, your body and brain are just interpreting there is something “wrong”.
Slow progress is progress. You may need to slow yourself down and look at how you have learned to think about yourself and how much pressure, expectation, perfection you are expecting. Meditation can really help with this (so can Claire Weekes).
Keep working on things while at the same time living life. You are progressing and that is very good!
Click to expand...

Hello, and thanks a lot for this supportive message, @Cactusflower, really kind.
I'm following a classic psychotherapy. Just speaking and searching in childhood or more recents difficulties.
This therapist followed me since my firsts real hypocondriacs problems, in 2010.

Speaking about PT... i don't really know... I get to a first one in Paris, he is well known for his skills working on my kind of problems, and he sounds very professional. For him, my tension comes from my fall, my body entered a "protective mode" and stay in that mode (for me it is about my pelvic muscles being spasmed and not able to get back to normal tension again)...

So those muscles must irritate the pudendal nerve... He was doing internal and external therapy (i mean he works in my anal cavity releasing trigger points). His approach was very near the wise-anderson protocol in my opinion.

But he was WAY to far from my home, i got to do 1h30 train to go and to come back for only 30 minutes of treatment... it was too much to handle for me... so i've to find a new PT nearby my home.... and i found one. But this one seems less competent... but both of them encourage me to go back to my usual activities, and i get a better mood since i begin to do it again..

I'm always trying to tell me, everyday, that i'm not broken, that everything gonna be fine, i'm always trying to act like if "everything" is normal... but it is not... really...

There always is a part of me keeping thinking that i've got something wrong physically... and that's what give me anxiety and more depression...

Even if there is "no abnormality" on all my imageries... the worst case scenario that "it will last forever" is always there somerwhere in my mind... And it get worses when i do not sleep well or when I have a flare up of the bad symptoms in my penis...

And, to finish on this: my skeptical mind always tell me that this sarno's theory is totally out of this world... i mean how my so real symtoms could come from my mind ?

I read a lot about the AHA moments... but i do not live a clear one for now... or maybe on or two times when i told my mind to stop the pain and it seems to work... but the neural pain pathway is always stronger and here i'm in the loop again...

How can i believe ? How can i live like that ?
 
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Hi and thanks for your support @HealingMe.

HealingMe said:
Physiotherapy - if this is to purely relax and you’re doing it to feel good, continue it but if it’s to address your “physical” issues, I would stop. You’re only telling your brain that there’s something wrong with your body.

You seem to have a structure and routine. I can tell by your lists and the way you write. Understand that by doing too much or trying to be perfect with your healing may enrage your subconscious. Something to keep in mind. I’m very similar and am learning to let go of perfection in everything that I do.
Click to expand...

There would be soooooo much to say about my need to "control" everything in my life (but the worse is about my health...)... And ai can't just "let go"... my routine is nearly extreme when i think about it... I'm using an app to be sure to do all the things I've to do... since some month before now i began writing list of things to do on a daily basis... but i think... well that's too much... I never had a moment for me...

And the moment i take for me (but for my beloved 7 years old son too), i fall on my back and broke myself... and loose all that control...

I understood you when you say that going to PT says to my brain that something is wrong with my body... but i'm sooooo afraid that things goes very wron if i don't see no PT or doctors... Because i still believe that something is bad with me... and i need to be healed...

At first, my doctor told me that i was on a "giant hypodoncry crisis"... i was so mad about her... but now, reading the mind-body connection, thinking about what i've been trough since 2023 till now... i'm thinking she was a bit right about this...

But know... what can i do...

HealingMe said:
What have you done fun recently? Something for yourself unrelated to healing? I’ve read many success stories and observed a large chunk of people get rid of their symptoms by not focusing so much on the symptoms and simply start engaging with life again. Yes sometimes it’s that simple.

I also agree with @Cactusflower about mindset.

You can do this and best of luck.
Click to expand...

I'm trying to not focus on those symptoms... but it takes me almost the majority of the day thinking about it i think...

Recently i've been to a gig, a birthday, see some friends at home, been to the christmas market... do some bike again... but there always is a moment where i want to pee... and the pain shows up... I'm trying to tell me that everything is ok, that the pain is real but that's a way for my mind to treat some emotional problem, that's i'm not brokent, etc.... the crisis is already there... i can't avoid it...

That's why i'm soooo desesperate... and began searching some success stories about that kind of condition...

That's what makes me come to speak here... i feel so lonely, so in pain, so feared about the feature...
 
I would suggest that traditional talk therapy is not working for you, and Dr. Sarno, and more current TMS doctors say it does not work for TMS.
If you have been going for so long but have increased symptoms, then it is not working. It can be hard to leave a therapist you trust, but sometimes all your work with that person is finished. They just don’t offer the skills you need and you must make changes.
I agree with your physio that your fall triggered this episode of TMS but your anxiety and emotional repression and hyperfixation (obsessions) are the cause. Have you read any books by Dr. Sarno or perhaps Gabor Mate? These would be helpful.
 
Cactusflower said:
I would suggest that traditional talk therapy is not working for you, and Dr. Sarno, and more current TMS doctors say it does not work for TMS.
If you have been going for so long but have increased symptoms, then it is not working. It can be hard to leave a therapist you trust, but sometimes all your work with that person is finished. They just don’t offer the skills you need and you must make changes.
I agree with your physio that your fall triggered this episode of TMS but your anxiety and emotional repression and hyperfixation (obsessions) are the cause. Have you read any books by Dr. Sarno or perhaps Gabor Mate? These would be helpful.
Click to expand...

I read "The mind body description" by sarno and i did not know about Gabor Mate, do you have a book in mind ?

For my psychologist, i think i'll try someone who can do EMDR or Sophrologist... i dunno... i'm a bit lost...

You see, today's was a good day, i reached my daily goals etc... But i flared up just now sitting on a chair making my son's homework... i did not get the point... i tried introspection... but nothing really stop the flare up... only getting on my feet....i did not understand what is the emotion that makesnme feel so bad just now... but all that pain for 30 minutes... totally wiped out all the rest of my day...

And the only way for me to get my mind working again is taking .50mg of Xanax... and it makes me feel very guilty... and when this flares up comes... i feel totally dipressed and i'm thinking how i'll manage going back to my work by the beginning of january... and i think i'm going to loose all in my life...

I feel so lonely during those phases... and fear comes...

i'm sorry for those bad feelings coming out right now...
 
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Once again,
Never be sorry for your bad feelings. Accept them, recognize that this is where you are right now, but it is temporary.
You no longer have to feel lonely because everyone on this forum understands you. On Facebook there is also a French TMS group that might be of great comfort to you. Our own @ChronicVince can tell you more.
TMS psychotherapy suggestions are Mind/Body not for relaxing, not for focusing on physical ailments but for recognizing the physical sensations our emotions give us. For sitting with them without fear, and knowing that the sensations and the emotions pass within minutes. Learning to tolerate the discomfort they bring because it is normal and human to feel those sensations. We fear because we fear being stuck in these sensations, but they are only chemicals in the body and they pass through us. You want a type of therapy that the psychologist helps you to sit with those feelings and allow them. EMDR, Somatic Experiencing, ISDTP (which not many psychotherapists are trained in), and Emotional Awareness Therapy (also, not many trained in this one yet). I would avoid any other types of therapy which are not recommended by TMS specialists.
"I reached my daily goals etc".
I suggest you drop the idea of "daily goals" -this is would fall into perfectionist tenancies that many of us with TMS have - you had a good day..why? Because of no physical symptoms? That is focusing only on the physical. How about working on changing your mindset to finding a good day when you can put less pressure on yourself to have "Perfect" days. For me a good day is a day I might have symptoms but I still manage to find joy through that day, or perhaps I may have a flair up but I don't freak out or don't worry about it or don't let it ruin my day. I may instead say "Aha, a flair up. What am I feeling emotionally that might contribute to stress and tension"...such as "I am having a good day and now I am stuck helping my son with homework and I HATE that! I'd rather be watching the football game!". This is exactly why we journal.

My question then is how do you journal?
Do you write about your day? Do you keep comparisons from day to day about your symptoms? Do you write about your symptoms and pain level? Do you keep this journal and the pages in it, or do you throw them away every time you write?

Your thoughts and worries about your pain and going to work are only thoughts. One of the big parts about learning about anxiety is that thoughts are not truth. They are only thoughts, only ideas of the mind to keep you safe. Your brain is only scaring you to keep you small, at home, huddled up where nothing can "get" you. You need to learn effective anxiety strategies and you can begin doing this before going back to work.

Read any book by Claire Weekes or listen to her books on Audible (maybe on other places). She has several small books and all are excellent. Old fashioned but her advice is exactly what the most advanced anxiety therapists use today: https://books.google.com/books/about/Vivez_bien_avec_vos_nerfs.html?id=yWwTngEACAAJ (Vivez bien avec vos nerfs)

Gabor Mate has a new book out (or will soon) but a good one is The Body Keeps Score - it will help you learn what to look for in the development of your thoughts and personality as to why you may focus on your physical pains and help you focus on the psychological aspects of TMS therapy.

Please excuse me in asking, I am not assuming you are ignorant, I just don't know how easily and quickly reading English comes to you. If you are comfortable with translating in your head on via Google, then you might want to try our free program here The Structured Educational Program. However, before you begin, I also suggest reading Dr. Sarno again. For many of us, it takes many readings to grasp all he has to say. With TMS the mind will avoid and resist the things we need to do the most, and so we often miss or don't fully understand what Dr. Sarno has to say.
Here is the program. You do it slowly. One day at a time at the MOST, you can go even slower but do not try to rush through it all. It is not about just reading the information, it's about allowing the mind and the heart to let you work through the program with vulnerability. With being able to tolerate the hard things that come up, by slowly learning that you can get through this difficult time in your life. https://www.tmswiki.org/ppd/Structured_Educational_Program (Structured Educational Program)

Know that the most important part of your journey is something you already understand: that the mind, and the emotions play a huge part in what is going on with you. Many people don't want to face this hard truth, but you are right there working on it.
 
Thank you for sharing your story, @syriaka. I understand the frustration and worry you're experiencing. As someone who has gone through similar challenges, I can assure you that you're not alone in this struggle.

Here are some thoughts that might help:

1. Your body isn't broken. The normal medical exams prove this. Your nervous system has simply become hypersensitive following your fall and the stress that ensued.

2. Traditional talk therapy may be insufficient for chronic pain syndrome. Consider exploring more targeted approaches like EMDR or cognitive-behavioral therapy could be a good idea, but double check before that your therapist totally embraces the MindBody Syndromes.

3. Physiotherapy can be beneficial if it helps you relax and regain confidence in your body. However, avoid excessive focus on physical "repair".

4. Give yourself permission to let go of perfect control. Your need to master everything may be fueling anxiety and symptoms.

5. Continue engaging in enjoyable activities, even if it's difficult. This helps rewire the brain to break the pain cycle.

6. Reading books on chronic pain syndrome, like those by Dr. Sarno or Alan Gordon (latest translate in French), and Schubiner, could provide valuable insights.

7. Be patient and kind to yourself. Recovery takes time, but it's entirely possible.

Remember: your symptoms are real, but they don't mean your body is damaged. With perseverance and the right approaches, you can overcome this and regain a fulfilling life.

I'd like to add that there are free resources available on my french website www.soulagerdouleurs.com, including a guide and booklet. I also offer a weekly newsletter in French where I share advice and learnings from the people I coach as a TMS specialist.

Stay strong on your healing journey, and continue to share it and accept supports, this forum is a goldmine !
 
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