Hello, new here

[Balenul]

In your case the fact sitting affects you so much make me think is pudendal related.In my case i start to have doubts since i really like to sit.I guess in my case pudendal is not so much affected but i have other problems also.For exemple my urethra hurts and sensations are bigger if i caught etc ( i guess is something muscular also ).I am very confused tbh and very few doctors can have a discussion with me since i learned so much.I wish i could get in a super good hospital and just let them do all but sadly it seems is not possible.In my first year i was ok also with sleeping.

Hello,

Yes, i do believe my condition is pudendal related due to sitting making it worse. It sounds like your symptoms could still be related to the pudendal nerve because the gabapentin was helping you.

i also have very tight pelvic muscles all the time, which puts a lot of pressure on the pudendal nerve and makes my bladder symptoms worse.

Maybe you could try to find another urologist that could help you with your diagnosis and treatment.

Problem is very few know more than me and i don t want to brag or something but this condition in Romania made me read like a mad man.Yes 100 % is mainly neuropathic pain i agree but i think pudendal is not entraped so surgery won t help.Strange part is pudenda block did nothing for my urinary symptoms but i saw on forum sometimes they don t work on urinary problems , urethra pain etc so is very complicated.Other theory is i have more things damaged as you also , pelvic muscles , pudendal but also a bladder hypersensitivy ( sometimes you have this with no food problems but i feel i developed abit of problems latly )...Also at cistoscopy my bladder neck is tight so is damaging the bladder and prostate and the hypersensitiv bladder make the bladder neck even more tight etc so is a circle of problems.I have ideeas i have faith since internal therapy worked and gabapentin did wonders.I will order Tarlige - Mirogabalin from Asia and pray will hope.But i have ideeas for others steps also.In your case pudendal is 100 % affected more than mine and is a possible entrapment and tight pelvic floor could be from pudendal problems or sometime they are together for no reason but they start affecting eachother.

Anyway feel free to talk with me anytime since i know your symptoms good and only strong persons can handle them for years.

Ps: you also have moments when is very hard to urinate and sometimes is easy ? but sometimes urination is making you feel bad ? even worse then before or same but sometimes better ....is so strange.Also , your problems are in urethra no ? the sensations , pain etc and rarely bladder ?

[April]

Hi Balenul,

My pain does not increase when I sit. In fact, Hibner thought that my for people with a small pelvis like mine sitting might open up the area a bit, making it less painful.

April

[Balenul]

Hi Balenul,

My pain does not increase when I sit. In fact, Hibner thought that my for people with a small pelvis like mine sitting might open up the area a bit, making it less painful.

April

Hibner wants to do surgery next step.botox do zero and pudendal block is also useless.blocks just flare me.....i am not convinced about the surgery

[capricorn91]

[/quote]

Problem is very few know more than me and i don t want to brag or something but this condition in Romania made me read like a mad man.Yes 100 % is mainly neuropathic pain i agree but i think pudendal is not entraped so surgery won t help.Strange part is pudenda block did nothing for my urinary symptoms but i saw on forum sometimes they don t work on urinary problems , urethra pain etc so is very complicated.Other theory is i have more things damaged as you also , pelvic muscles , pudendal but also a bladder hypersensitivy ( sometimes you have this with no food problems but i feel i developed abit of problems latly )...Also at cistoscopy my bladder neck is tight so is damaging the bladder and prostate and the hypersensitiv bladder make the bladder neck even more tight etc so is a circle of problems.I have ideeas i have faith since internal therapy worked and gabapentin did wonders.I will order Tarlige - Mirogabalin from Asia and pray will hope.But i have ideeas for others steps also.In your case pudendal is 100 % affected more than mine and is a possible entrapment and tight pelvic floor could be from pudendal problems or sometime they are together for no reason but they start affecting eachother.

Anyway feel free to talk with me anytime since i know your symptoms good and only strong persons can handle them for years.

Ps: you also have moments when is very hard to urinate and sometimes is easy ? but sometimes urination is making you feel bad ? even worse then before or same but sometimes better ....is so strange.Also , your problems are in urethra no ? the sensations , pain etc and rarely bladder ?

[/quote]


Yes it definitely sounds like bladder hypersensitivity in your case and i agree that in my case it seems like nerve entrapment. I hope the medication works for you. Regarding the questions, my bladder usually feels more painful after drinking any liquids, like water, i think because it is stretching the bladder when it fills up. It's very hard to explain but i always feel a constant urgency as if my bladder is extremely full always, but my bladder feels this full even when it is actually empty.

i have extremely bad urgency that i have to go to the toilet like every half hour, sometimes hardly anything will come out of my bladder other times it is more. I do have pain in my bladder, and the pudendal nerve is always painful and my urgency is always there, not so much the urethra, it is more the pudendal nerve pain.

You probably missed April's question in another post, but she asked you what did Hibner say to you about why the nerve block didn't work for you?

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[capricorn91]

My pain does not increase when I sit. In fact, Hibner thought that my for people with a small pelvis like mine sitting might open up the area a bit, making it less painful.

April

Hi April,

That's interesting that sitting doesn't make it worse for you, i use an inflatable donut cushion to sit on and it helps a lot, my pain is much worse if i sit down without the cushion. I also tried the Tolterodine drug and unfortunately it made my frequency, urgency and pudendal pain much worse. The medications all seem to make my symptoms worse which is very frustrating and disappointing. I'm considering trying acupuncture to see if it will help with my pudendal nerve pain.

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[April]

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

[capricorn91]

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

Hello April,
Thank you, yes, it's very frustrating, i agree it's worth trying many different treatments, especially when specialists have long waiting lists. In regard to your question, i think Balenul said that the nerve block didn't do anything for their pain.
I'm not one hundred per cent sure, hopefully he can give you an answer.


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[adelphos2]

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...).

[capricorn91]

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,

Do you have PN or bladder symptoms also?

I haven't had a cystoscopy, so i am unsure about the conditions that i have, because I've never received a diagnosis, but it definitely sounds like it could be bladder pain syndrome. It makes sense what you are saying, although i definitely feel like it is more nerve pain for me.

I can actually tell the difference between the nerve pain and the bladder pain. I had only the bladder pain for about seven years before i developed the nerve pain so this is why i can tell the difference.

i have all the symptoms of Pudendal Neuralgia like having pain between the pubic bone to the tailbone, but more internally if that makes sense, and my nerve pain is more in front of the bladder or below if that make sense? It's like a constant dull aching pain, but also burning, numbness and sharp pain sometimes.

My nerve feels like it is trapped and crushed and sitting causes so much pain and makes it worse, then my nerve gets kind of numb after sitting, but it's always extremely painful and the pain is constantly there. And stretching helps a lot. Maybe i have both conditions, because i definitely have a lot of bladder symptoms as well as pelvic pain.

I started getting pudendal pain when i abruptly stopped taking the tricyclic antidepressant amitriptyline.

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[Balenul]

Ic can mimic Pn and vive versa...sometimes are both is complicated .No April the block failes but was done in Romania to relive my urinary symptoms did zero but sadly from what i read even on this forum for some the block fails in helping urinary symptoms.I wonder if your block helped your urinary symptoms April maybe you told me but i don t remember sadly.Hibner did not say much about the failed block and urinary symptoms cause Gabapentina reduced them greatly and when i saw him i had mainly Pgad.He did steroid blocks of pudendal and dorsal branch and botox in pelvic floor but both failed and in 2 months urinary symptoms returned ....i should still had the steroid and botox in me but they returned so i don t know what to say if pudendal give me this constant urethral pressure ( is a pain to be clear , my pressure is a pain that sometimes is helped by urination but sometimes urination makes more sensibility there )....i think there are several disfunctions , nerves , mucles , bladder.....maybe pudendal also but he don t respond to blocks regarding Pgad and urinary symptoms ....don t know what to say really , Hibner also is abit lost.He told me in his opinion we could try surgery but i don t know every block failed and uroligists say are pelvic muscles and bladder pain....like i said i think is a mixed and i also think pudendal is involved but is not responding to the blocks at all....But THE BIG NEW SYMPTOMS IS PENIS PAIN ON THE RIGHT SIDE ONLY , BURNING ETC...this is new and is worse when i strain and is also present in my feet especialy down , near the little finger and like 20 cm more in the direction of the heel.lateral pain basicly only ....this sounds like pudendal / sciatic pain.Also i have big pain in the sacral area especialy on right.....this are new symptoms so imo show clearly a nerve problem also...

I think u will try few more less invasive things and i will consider neuromodulation at doctor Van Buyten in Belgium is clear my nerves are not function good anymore sadly and me , doctors are not sure what to do....i could risk a pudendal surgery now with this new pain but not sure if is a right move if i have no response and helps from pudendal ocks.....my case is not simple at all...let s not forget i had a pitutary apoplexy that was BRUTAL , i barelly survived and i also had a rectal prolapse surgery laparoscopic with mesh ....i think my autonomic nervous system was damaged by the surgery i had the Hpa axis so ye is not simple....i know medicine regarding this problems like i did a new university but is in vain i am worse and worse

Capricorn in your case i guess is both bladder pain syndrome and some pudendal involvment and ofc also muscles.....but in time with chronic pain our brains start to not work good and we develop central sensitization etc and this must be adresses also.Gabapentin working i agree show mainly nerve dmg but gaba also work on bladder syndrome...is not easy at all.

In 3 days i will have a meeting with Nucelio Lemos i am curious what he will say.Will write back and update you all

PS : sry for exprimation and writing bad some words i am in big pain and with low morale