Health Organization for Pudendal Education

My lumbo sacral Mri is not great but this morons in Romania have no ideea how this can impact my urethral symptoms.Hibner said he don t know to interpret a lumbi sacral Mri good also.Problem is if my new penis pain on right side and sacral pain of from my back or from my pelvic floor and abdominal pressure is complicate since i also had that pain on right side near the finger.A sacral roots block i think is worth trying.

Sacral roots block can relieve pain very good also i read some time ago but i have like 2k saved pages so hard to find them....

I like adelphos2 knowledge he knows many things.

adelphos2 wrote: ↑Mon May 20, 2024 5:10 am Capricorn,

I don't see anything in your description that makes me think you have PN (i'm sure there is more to your story, just going off what I know). I assume by now you have a had a cystoscopy which was negative, and you don't have IC. In that case, consistent with your description, you have bladder pain syndrome. As it has been present so long, the affected areas of pain have expanded more widely into the pelvis. Medications can help, but you will need a program that also addresses the effects of chronic pain on your nervous system (education about chronic pain, training on how to regulate your own nervous system, etc...).

Hello.I like your posts , you are well informed , i am curious what you think about my case also.I posted bellow a update on my condition.

April wrote: ↑Mon May 13, 2024 5:53 am Hi Capricorn,

Yes, most pn patients use a cushion. Oh, yes, that sounds frustrating--so sorry. My pt did a little acupuncture but it didn't seem to make a difference on me, but I think it is important to try a lot of different treatments, especially when they don't have side effects like acupuncture.

Hi Bale,
Did you say that the block (done with imaging) temporarily reduced your pain? That is one of the diagnostic tools that surgeons use to determine if the pain is coming from the pudendal nerve. Surgeons also look holistically at the history of your problem and symptoms to determine if you're a good candidate for surgery. I'm assuming he did that too?

April

April blocks did zero.I writed more in another post.Hibner insist with another blocks he is kinda lost in my case sadly....he can t respond to many questions i have.I feel i need a doctor with more overall knowledge that s why i will talk with dr Nucelio Lemos

capricorn91 wrote: ↑Thu Apr 18, 2024 2:24 pm

Balenul wrote: ↑Sat Apr 13, 2024 6:20 pm But why you waited so much....your symptoms are a constant urgency all the time every day ? They also disturb your sleep ?

Yes, my symptoms are constant urgency all the time every day and night, it never goes away. The same as your symptoms, sometimes it is hard for me to get to sleep, but other times i can fall asleep really quickly if i am very tired, and i can usually stay asleep for a long time, unless i wake up to use the bathroom.

The reason i waited so long to get a diagnosis was because the drug amitriptyline or endep actually caused my pudendal pain, and i thought that every other drug was just going to make it worse.

So, i thought there was nothing else that doctors could do to help me, i didn't understand about nerve blocks or surgery for this condition, because it took me a long time to even work out what this condition was, now i am absolutely one hundred per cent sure that i definitely have pudendal neuralgia.

I also decided to cancel a urologist appointment years ago, because i thought they could only help with the bladder, and i didn't understand that they would be able to diagnose the nerve pain as well.

Hmm but i am amazed your 24/7urgency don t get you up all the time.for mw is waking me non stop when i am very bad but i ignore it and go only 3 , 4 times since i know is fake but is ruining my sleep ...but is not a real urgency is a pressure i feel like pain

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Balenul i have read your other posts, sorry to hear the pain has gotten worse for you. Yes, it's very strange that the urgency and pain does not wake me up, although it is sometimes difficult to get to sleep. Did you ever have a cystoscopy? Neuromodulation sounds like a good option in your case.

I definitely feel like it is pudendal pain in my case, i'm almost one hundred per cent certain, although i have not yet been diagnosed. The nerve pain and urgency are even worse than the bladder pain for me.

i also have the heavy feeling and pressure in the bladder/pelvic area.

I recently tried acupuncture and it helped so much, it took the nerve pain down by half, about 50 per cent, it also helped with pgad symptoms, but unfortunately it only lasted for about 12 to 24 hours before the pudendal pain came back again, and sadly did nothing for my bladder pain and urgency symptoms.

I don't understand when people say about central sensitisation, is that because the brain has gotten used to being in this state of pain for so long? and how would that be treated?


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I see, Bale. So sorry that Hibner isn't able to figure it out. Let us know how it goes with Dr. Lemos.

April

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Hi April,

I was wondering if the surgery helped with your bladder urgency symptoms? and i also have the same question for Violet as well.

I think Balenul wanted to know the answer to this question as well in one of the previous posts. I can't remember if you had already answered this previously.

Also, i have heard about acoustic shockwave therapy for PN and radiofrequency ablation or cryoablation, also neuromodulation, what are your thoughts about these treatments?

Do you think they would provide long term relief?

Thanks April.



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capricorn91 wrote: ↑Wed Jun 05, 2024 11:16 am

I don't understand when people say about central sensitisation, is that because the brain has gotten used to being in this state of pain for so long? and how would that be treated?


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A simple way of saying it would be that your nervous system becomes super sensitive. One of the symptoms I experienced was that my nervous system was so much on edge that jus hearing the phone ring would make me jump.
For a scientific explanation you can read this article. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2750819/

There are various ways of treating it, such as medications to reduce your pain levels, or pain management strategies like neuromodulation. For me, having surgery to release the pudendal nerve compression allowed the nerve to heal and slowly over time, the nervous system calmed down.

Violet

Hi Capricorn,

The surgery did reduce the bladder urgency symptoms. I do still get that urgency (in a mild form) when I have pain. They seem to go together. When I have heat or ice on, though, the urgency goes away. And the urgency isn't nearly as problematic as the pain. It's just a small nuisance. Back when my pain was greater, it was a bigger problem though.

I have not tried those therapies myself. I almost did cryoablation but did not, and I'm glad I did not. I was reluctant to try them because of the inconsistent info I was getting about their effectiveness. But I don't know that much about them. The treatment I did strongly consider was a stimulator. Back when I was doing research on treatment options, that was the one that seemed to have the strongest success rate. And pain doctors also seemed to know more about it.

Anyway, I hope that helps a little.

April

Violet,

Thanks so much for the article, that is very good to know that your nervous system was able to become less hypersensitive after surgery, i also feel that surgery would be the best option for when it truly is a nerve entrapment.

April,

Thank you for your response, it's very reassuring to hear that your urgency symptoms improved with the surgery, i also didn't know much about the other treatments, but i have read about the peripheral/sacral nerve stimulator being a good option where surgery has failed or if people are not candidates for surgery.

I found some interesting information about diagnosing and treating pudendal neuralgia/entrapment, i will post the link below in case other people want to read it also.

https://www.ncbi.nlm.nih.gov/books/NBK544272/

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