Hello, new here

[Violet M]

Hi Capricorn,

My recovery from surgery was slow which is typical for PNE decompression surgery. I was able to go off my pain medication at about 9 months post-op and I was able to start sitting quite a bit by 18 months post-op. I took it easy and didn't walk much for 5 months post-op and then I started walking 5 minutes a day and slowly increased it. Now, I can walk as much as I want and hike in the mountains.

My understanding is that if you truly have a nerve entrapment, managing it with drugs for a long time before getting the nerve released might allow more damage to take place. So, that might be something to ask your doctor about.

Violet

[April]

Hi Capricorn,

You asked which medication helped with my urinary frequency. I took tolterodine for that and it definitely helped. I took a different medication before that tolterodine that also worked, but I can't remember the name. (I switched because the insurance company asked me to try out tolterodine because it was cheaper.) I'm sorry you're having this pain. I hope your medications give you some relief. As Violet said, diagnosing is complicated. Doctors usually want to get fully history on how the pain started, where it is, and what your other symptoms are. Hopefully, the article Violet gave you will be helpful for understanding the diagnosis process.

Take care,
April

[capricorn91]

Hi Capricorn,

My recovery from surgery was slow which is typical for PNE decompression surgery. I was able to go off my pain medication at about 9 months post-op and I was able to start sitting quite a bit by 18 months post-op. I took it easy and didn't walk much for 5 months post-op and then I started walking 5 minutes a day and slowly increased it. Now, I can walk as much as I want and hike in the mountains.

My understanding is that if you truly have a nerve entrapment, managing it with drugs for a long time before getting the nerve released might allow more damage to take place. So, that might be something to ask your doctor about.

Violet

Hi Violet,

Yes, i have read that nerves are very slow to heal, it sounds like your surgery was very successful, and that you were able to gain massive improvement! That is good advice, however, i have already had PNE symptoms for seven years now, do you think this will make surgery any less successful for me?

I'm wondering if a surgeon might not even do the surgery until i have tried medications first? such as cymbalta and lyrica.

Also did your surgery help with urinary urgency and frequency symptoms?

[capricorn91]

Hi Capricorn,

You asked which medication helped with my urinary frequency. I took tolterodine for that and it definitely helped. I took a different medication before that tolterodine that also worked, but I can't remember the name. (I switched because the insurance company asked me to try out tolterodine because it was cheaper.) I'm sorry you're having this pain. I hope your medications give you some relief. As Violet said, diagnosing is complicated. Doctors usually want to get fully history on how the pain started, where it is, and what your other symptoms are. Hopefully, the article Violet gave you will be helpful for understanding the diagnosis process.

Take care,
April

Hi April,

Thank you that's helpful to know about the medication. That makes sense that doctors would want to do a thorough evaluation of symptoms especially before doing any surgery. Yes, the article Violet shared with me about Nantes diagnostic criteria was very interesting and informative. It definitely looks like a long and complicated process. I've just had the symptoms for so long now, it's very difficult, as you could imagine.
If you don't mind me asking, did you also have surgery? or do you manage your pain with medication?
Did you also have PN with or without entrapment?

[Violet M]

Hi Violet,

Yes, i have read that nerves are very slow to heal, it sounds like your surgery was very successful, and that you were able to gain massive improvement! That is good advice, however, i have already had PNE symptoms for seven years now, do you think this will make surgery any less successful for me?

I'm wondering if a surgeon might not even do the surgery until i have tried medications first? such as cymbalta and lyrica.

Also did your surgery help with urinary urgency and frequency symptoms?

It is best to have surgery sooner if you have a nerve entrapment, but there are people who have had surgery after many years and still get better. So, I think there is still reason for hope.

It might depend on the surgeon as to whether they would make you try medication first, but if they think you truly have an entrapment, I don't think most of them would require that you try medication first if they think that you are a candidate for a possible successful surgery.

Yes, surgery helped with urinary urgency and frequency symptoms but not completely, because I have a severe cystocele (bladder prolapse) that I have chosen not to have repaired because I don't want to risk having the severe PNE symptoms return.

Violet

[capricorn91]

[/quote]

It is best to have surgery sooner if you have a nerve entrapment, but there are people who have had surgery after many years and still get better. So, I think there is still reason for hope.

It might depend on the surgeon as to whether they would make you try medication first, but if they think you truly have an entrapment, I don't think most of them would require that you try medication first if they think that you are a candidate for a possible successful surgery.

Yes, surgery helped with urinary urgency and frequency symptoms but not completely, because I have a severe cystocele (bladder prolapse) that I have chosen not to have repaired because I don't want to risk having the severe PNE symptoms return.

Violet
[/quote]

Thank you, Violet, for your reply, that does make sense about the surgery, and a relief to hear that other people also had improvement after such a long time with symptoms. That's good to know that your urgency symptoms improved, and completely understandable that you wouldn't want to risk the return of your previous severe symptoms. Thank you for answering my questions!

I will try to continue to post updates throughout my progress during diagnosis and treatment, but for now there isn't anything new to share. Except that I'm considering taking Lyrica, but i don't think i will take Cymbalta/Duloxetine after all, just because i feel that the potential side effects outweigh the benefits for me.

[April]

Hi Capricorn,

I did have surgery (in 2018), and I do think it was entrapped b/t the SS and ST ligaments---that was Hibner's assessment before surgery and it looked like it when he was in there too. The surgery definitely helped, but I do still have pain, but I manage it almost always with just heat and ice. So, I'm in a much better place than before. I was on many medications before the surgery, and I also used ice all the time (until the last few months before the surgery when I discovered heat).

April

[capricorn91]

Hi Capricorn,

I did have surgery (in 2018), and I do think it was entrapped b/t the SS and ST ligaments---that was Hibner's assessment before surgery and it looked like it when he was in there too. The surgery definitely helped, but I do still have pain, but I manage it almost always with just heat and ice. So, I'm in a much better place than before. I was on many medications before the surgery, and I also used ice all the time (until the last few months before the surgery when I discovered heat).

April

Hi April,

I was wondering how long you had symptoms of PNE before you were diagnosed and before you had surgery? Were you diagnosed by nerve block or MRI?

That's good to know you had improvement in your symptoms and that the heat and ice gives you relief!

Do you use a heating pad over the pelvic area? and for how long do you use it and how long does it provide relief?

[April]

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

[Balenul]

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