Hello, new here

[Balenul]

Hi Capricorn,

I had symptoms for about four months before I was somewhat informally diagnosed ---I helped the diagnosis process because I found this site. Then a couple of months later I was more formally diagnosed by a urologist who had done pn surgeries (but stopped doing them). And that diagnosis was based solely on symptoms---no block. (And my case is a little unusual because sitting doesn't usually create an increase in pain.) But, I did have a block later that reduced my pain. I had surgery about four years after my symptoms started.

I use the heating pad directly on the vulva. I wear bike shorts with the pelvic floor area cut out, so that the heating pad doesn't harm legs as much (but I do have discoloration on inner thighs even with the fabric of the shorts protecting that skin---but it's been getting better over the past couple of years because I need heat less often than in the past.) I use it as long as I have pain. Sleep is tremendously helpful, so I often wake up with less pain or in some cases no pain, but then if often kicks in later in the day. That can go on for 2-3 days. I just keep using it until the flare passes. I try to wean myself off of the heating pad if the pain is declining. When I have to leave the house and the pain is bad, I use ice or a tramadol. But I've only had a handful of those in the past year or so.

Have you found heat and ice helpful?

April

I asked in other post also....i wonder if the block helped with urinary symptoms....for me was a big No.Also no sitting pain

[Balenul]

But why you waited so much....your symptoms are a constant urgency all the time every day ? They also disturb your sleep ?

[April]

The urinary symptoms were not that extreme. I was able to manage those symptoms successfully with medication. The pain was extreme and because I controlled it with largely with ice (and some low-level medications), I eventually did damage to my skin, which also created (constant) burning pain that could only be blocked with ice (what a mess, right!). The pain did disrupt my sleep (though I think that was largely the panniculitis from the ice), so I had a mini-freezer in the bathroom by my bedroom to replace the ice when the pain woke me, so it was awful. But I wasn't sure that surgery would work. I didn't know if I had an entrapment. I'd heard lots of negative stories about surgery, so I just didn't consider it until after 3.5 years. I requested another MRI with the Potter protocol and it did show edema in the area where the SS and ST ligaments intersect on the left (exactly where I felt the pain may originate), so it was enough info for me to start looking into surgery. So, that is how it all happened.

Have you talked to a doctor about surgery? Have you tried medication for your symptoms?

April

[capricorn91]

Hi Capricorn,

I had symptoms for about four months before I was somewhat informally diagnosed ---I helped the diagnosis process because I found this site. Then a couple of months later I was more formally diagnosed by a urologist who had done pn surgeries (but stopped doing them). And that diagnosis was based solely on symptoms---no block. (And my case is a little unusual because sitting doesn't usually create an increase in pain.) But, I did have a block later that reduced my pain. I had surgery about four years after my symptoms started.

I use the heating pad directly on the vulva. I wear bike shorts with the pelvic floor area cut out, so that the heating pad doesn't harm legs as much (but I do have discoloration on inner thighs even with the fabric of the shorts protecting that skin---but it's been getting better over the past couple of years because I need heat less often than in the past.) I use it as long as I have pain. Sleep is tremendously helpful, so I often wake up with less pain or in some cases no pain, but then if often kicks in later in the day. That can go on for 2-3 days. I just keep using it until the flare passes. I try to wean myself off of the heating pad if the pain is declining. When I have to leave the house and the pain is bad, I use ice or a tramadol. But I've only had a handful of those in the past year or so.

Have you found heat and ice helpful?

April

Hi April, thank you for your reply!

That is good that you were able to get a diagnosis quite soon after your symptoms started, it's very good to hear that your symptoms improved a lot after surgery.
Yes, i have found that ice helps my symptoms more than heat, however its only usually quite temporary relief, so i feel that i would probably need a nerve block for longer relief of symptoms.

I have heard that some nerve blocks only give relief for a couple of hours and other nerve blocks can give relief for months, i guess it depends on the medications they use for the nerve blocks.

Recently i tried the drug Lyrica, and unfortunately it made my pain a million times worse, so i had to stop taking the drug after only one time.  I am currently considering maybe some alternative therapies like chiropractic treatment or acupuncture, maybe within the next couple of months.

[capricorn91]

Yes i have your symptoms.I know how they are....i am a 39 male and have them for 3 years.All my urinary symptoms are mostly in urethra , constant urgency that never go away , almost all the time i have difficulty in urinating but sometime i pee normal.I also have burning / foreign object , stinging in urethra etc.All symptoms get worse when i walk.I also had Pgad but now is very rare....no other type of pain.Had 2 blocks , 1 when i had urethral symptoms but did zero for me and second when i had mainly Pgad , this was with steroid and again did zero.No sitting pain or other pain.Many times this symptoms ruins my sleep....i saw so many doctors and i can say i know more than most sadly.Gabapentina helped my urinary symptoms 10 months but after Hibner did the botox and pudendal block for Pgad they returned.I also have a mesh in me after a rectal prolapse surgery....the more i know the more i see i still don t know much and doctors non stop praise me for my knowledge...is in vain i am very bad atm...my sensation are killing me.What i know for sure is my pelvic floor is very spastic and the presence of the absorbable mesh...more i don t know.I guess is also a neuropathic pain since gabapentin worked so good.I will meet the best doctor for bladder pain in my opinion he is from Hungary and i am Romanian.....my question is how did you endure all this years ? What other type of pain you have beside urinary ones and Pgad ? If you need more details i am available ...for me if i pee and go straight in very hot water and i don t move 30 min my sensations are ok....i dislike walking make all worse.....I am not sure is pudendal nerve entrapment i guess is pelvic floor that affect pudendal and pressure from my abdomen cause of laparoscopy scars....what the absorbable mesh did i don t know.....Hibner told me surgery is a step not sure about it.....i feel horrible this period can barely sleep but i am not confident in surgery sadly....i consider neuromodulation more atm i guess.I will see.....13 years like this i can t imagine really , for me is bad permanent when non in bath atm and abit after if you are same you are very very strong....if your sleep is also disturbed constantly you are a hero.....maybe in your case is only pelvic floor and pudendal nerve not even Ic / bps

Hello,

Thank you for what you said, you are also strong to go through this pain. It's pretty much the worst pain anyone could go through. Sorry to hear that the nerve blocks did not help your symptoms.
This is interesting that walking makes it worse for you, because i find that walking helps my symptoms a lot, especially if i go for a very long walk. My symptoms get much worse when i'm sitting down, so it is much better for me to be standing up or even lying down.

i have nearly all the same symptoms as you do, the burning, sometimes numbness, but the pain is the worst symptom and definitely feels like nerve pain, the nerve pain is like a constant dull aching pain, with a feeling like my bladder is so full, even when my bladder is actually empty.

i can also tell the difference between my bladder pain and nerve pain. My bladder symptoms get worse after eating and drinking water. You could be right, maybe the bladder symptoms could be because of pudendal nerve entrapment, i will have to get a diagnosis from a urologist to know for sure.
i don't know how i endured it for years, to be honest i didn't think there was much they could do for my bladder, but then the nerve pain was so much worse than the bladder pain.

Actually, my sleep is not disturbed by the pudendal neuralgia, but it is difficult to fall asleep in the first place, but luckily i usually stay asleep, unless i wake up to use the bathroom. Sorry to hear your having trouble sleeping, have you tried Melatonin or some sleep medication?

Your symptoms sound very similar to my symptoms, is the Gabapentin not working for you anymore? and have you tried Lyrica? Could you try something like Diazepam for spasms? I agree that surgery should be the very last treatment option, if nothing else has worked.

[capricorn91]

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.

[April]

Hi Capricorn,

Yes, heat and ice only relieve pain while they're in use, but it's a safe way to get relief:)!

So sorry to hear that Lyrica seemed to create an uptick in pain. Pn pain sometimes fluctuates in inexplicable ways, so if you got an uptick after just one pill, it's possible that it was just a fluctuation in the pain.

Most of the people I hear from on here do not get extended relief (months) from the steroid in a block. I did once hear a doctor say that one of his patients got extended relief, but I think that might be the only time I've heard about that. It is quite common, however, to get a flare from the steroid. But, the numbing agent does numb up the nerve for a few hours.

April

[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.

[capricorn91]

Hi Capricorn,

Yes, heat and ice only relieve pain while they're in use, but it's a safe way to get relief:)!

So sorry to hear that Lyrica seemed to create an uptick in pain. Pn pain sometimes fluctuates in inexplicable ways, so if you got an uptick after just one pill, it's possible that it was just a fluctuation in the pain.

Most of the people I hear from on here do not get extended relief (months) from the steroid in a block. I did once hear a doctor say that one of his patients got extended relief, but I think that might be the only time I've heard about that. It is quite common, however, to get a flare from the steroid. But, the numbing agent does numb up the nerve for a few hours.

April

Hi April,

Thank you, you could be right about the pain fluctuation, but unfortunately the pain was so severe for twenty-four hours straight after taking Lyrica, so i don't think i would want to try it again.

That is disappointing to hear the nerve block doesn't always provide long term relief, but i guess it is also an important part of diagnosing the pudendal neuralgia.

I am going to try some of the bladder drugs, possibly tolterodine, to see if it helps with my urgency symptoms, because i know you said it worked for you, so hopefully it will help my symptoms as well.

[capricorn91]

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.