CPPS or PN

[Alessandro76]

Hello to everyone,

first of all,
happy new year, hoping it will be....

I am writing to you because I have more doubts than certainties, maybe YOU COULD HELP HIM to find some of this answers

ok lets start,
I have been suffering from chronic pelvic pain for about 10 years, the first years were devanting, nobody knew what I had, 2 years to understand 2 years to have a diagnosis, in the meantime, I lost my job, the work I have always loved ,and with this, all my dreams and my hopes, I was in the prime of life...things that you know, all of you, unfortunately

I was not diagnosed with a PN but a CPPS, After this I started to fight it , I wanted my life back, because I did not know and still I never understood why, or which had been the cause ( everything was negative)

so I started to looking for the best doctors in Italy, anfter that ( was not easy to find some doctor able to understand this disease
when i found it and after diagnosis and a cure (muscle relaxants, benzodiazepines) I realized was not enough the physiotherapy was the key, and I did it for years, standford protocol

after years I had no more symptoms, I picked up my life, I FORGOT EVERYTHING, I DELETED from my mind EVERYTHING, about this disease,
i left milan and i move to london and i became director for one of the most important architectural firm in the world
Meanwhile the years pass, and I was happy, I resumed going to the gym, (always trying to be careful), I did it for years, until without any reason or trauma or surgery, I began to feel a foreign body in the rectum and coccyx pain sacrum. the tension radiates towards to the buttocks.
no pelvic problem, or anal pain (perhaps a little burning around the anus)
no problem sitting, no electric shocks in the pelvic area and no post-ejaculation pain, or tingling
but as you can imagine
if you type on google these words
coccyx pain / tension , foreign body in the rectum/tension to the sacrum / buttocks,
the result is :pudendal neuropathy
in comparison with CPPS is a trivial flu

imagine my mood
i called the all doctors with which i was in touch, the neuro urologist ( prof. Pesce from Rome ) has excludes neuropathy, he told me it was a relapse of my previous problem
my fear was that the symptoms that I had,were more like to PN
btw after a 4 or 5 sessions of physiotherapy everything returns to normal, and i decided to cancel all appointment booked with Dr.bautrant and other doctors of half europe

but after an year agai 2 days ago my problem is get back, and now I'm scared again, what make me angry is I do not know what may have been the reason that triggered everything yet

my symptoms are tension to the coccyx which radiates towards the pririforms
It seems like someone kicked me in the ass
sometimes I notice the stretching in the buttocks or around the anus, or in the both legs from the buttocks
I've been sitting for an hour to write these few words to you guys, and I do not feel any problem ( at the moment) and if I have understood, the main symptom or one of the main symptoms is the pain from sitting down
the sensation I perceive is like having a closed rectum, but not like a foreign body in , what I would like to do is,to enlarge the rectum , it means try with my hands to take the ischiums and open them


and I have already booked a visit with bautrant ( i have sent an email today, i hope some of his staff will reply me soon, but i know already that i have to wait months and moths, in the maintime i booked for a 3-Tesla magnetic resonance imaging (3T MRI) exams

i really want to understand what i have I can not be asymptomatic and do everything I want, and then, I do not know why, maybe for some reason have these problems again.
and i hope that someone of you try to help me, i know that we are not doctors and we can not do diagnosis, but for sure, guys you have the experienc, and maybe you can advice me or suggest me.

hope that someone of you will reply me.

thanks in advace

Alessandro

[Violet M]

Hi Alessandro,

I am so sorry to hear of the struggle you have been through, including losing your job. It's interesting that you had significant improvement after you had 4-5 sessions of PT. Are you able to go back to the same PT now that your pain has returned? Maybe it will help again. It is less invasive than surgery and much cheaper.

The one thing I can tell you about Dr. Bautrant is that if he doesn't think you have a nerve entrapment he will not do surgery. My guess is that he will most likely do an anal exam and press on the pudendal nerve at the ischial spine and the Alcock's canal to determine if you have pain at those sites. Do you have a PT who can give you a preliminary exam while you are waiting for your appointment. I understand how difficult the wait is for an appointment. It can seem like forever.

I think the relationship between pudendal neuralgia and chronic pelvic pain syndrome is not as simple as just having one or the other. I think that if you have an irritated pudendal nerve (pudendal neuralgia) it can cause chronic pelvic pain. There are different causes for an irritated pudendal nerve and the real trick is to find the root of what might be causing that irritation. You may have musculoskeletal anomalies that predispose you to pudendal nerve irritation. I think you are smart to have a 3TMRI but don't be too disappointed if it doesn't give you definite diagnosis because it won't necessarily show all of the musculoskeletal anomalies that can lead to PN. According to the Nantes criteria for determining if you have a nerve entrapment, pain is predominantly experienced with sitting. So since you don't have pain with sitting, hopefully you don't have a nerve entrapment. You may just have pudendal nerve irritation that can be calmed down again like it was before for you.

Violet

[Alessandro76]

Ciao Violet,

thank you for your prompt reply.

I have already started a PT path, with a Pelvic Pain specialist in Italy, (I tried someone here in London but they did not convince me at all)

if I have to be honest with you I think he has already tried to do this test,
I can tell you that I have triggers in periurethral area and in the obturators, anyway I will ask him to do it this pudendal test again next time, (i will keep you posted) unfortunately i have to wait the end of this month.
we had decided to have one session per month, because in the last year I was practically asymptomatic, or I had small relapses that lasted a few days.

You know it's very strange, I try to be very careful about what I do, and I would say that I always do the same things, ( eat, gym workout (NEVER LEGS or BUTTOCKS)ET ETC ) I can even go to the gym every morning, and nothing happens then i can do the same thing, and i do not know why, same thing happens, I can not understand what the reason is, I feel muscle tension on the buttocks, on the pyriforms both), and on my coccyx/ sacrum.

I must also say that yesterday I get back in London after my Christmas holidays from my hometown, I've been sitting on the plane for 2 hours and I did not feel any pain ( sometimes a bit of tension on buttocks)but absolutely i can't call it pain.
I think, if i follow Nantes criteria it will mean something? what do you think about it?

thanks in advance for any kind replies

Alessandro

[Violet M]

Ciao Alessandro,

Well, I understand the frustration of not being able to figure out the exact triggers and what causes a flare-up. I think that's a good sign that you didn't have pain sitting. I didn't fit the Nantes criteria exactly but I think you can use it as a rough guide to determine whether you have an entrapment -- especially with the major criteria. The one that I didn't fit was that the pain doesn't keep you awake at night or wake you up. For me it did because I would have nerve shocks at night that kept me awake or woke me up.

Violet