Health Organization for Pudendal Education

Hi ,
Oh well,i had three pt sessions already,not big flare ups,but i am having some pain.
My physical therapist found out that my hips are misaligned,the left one ,and also very tight muscles in left side of the pelvis,she told me this
past wednesday that i might have PN/PNE ,because she said that my muscles were more relaxed when she touched them and worked them that day,and if that was my problem(muscular) i should be feeling better.
Made me feel so sad,since on the first visit she tought my problem were muscular ,but now with the pts and muscles there being more loose ,and still in pain,she thinks is PN/PNE.
My left leg hurts,as well as the hip,so now she is treating me,hip misaligment,muscular disfunction(left side only),and nerve.SO SAD.
Next pt ,on tuesday and thursday,I always try to be positive but this is getting me very depressed.

Lara.

Lara,

I know how depressing this condition can be; we all do. I'm sorry you've heard bad news from your PT. Just remember, even among the experts, there is so much unknown. I think it's important to listen to your body and your pain levels. If doing PT increases your pain, maybe you will want to back off a bit, or even stop. I think sometimes it's best to focus on "doing no harm."

Keep your spirits up! I pray your body will find a way to heal.

I'm sorry Lara, it is a sad condition but for many people there is life after PNE. You just have to keep searching for the right treatments and keep fighting. In the end, it makes you a stronger, more empathetic person.

Lara dont be depressed please, we are all there in the fight, as violet said it makes us a stronger empathetic person. Try all treatments available along with life style changes.

Than you ,i was diagnosed with Pn/pne yesterday by Dr Adashek,he thinks that where the hemorrohoid was removed
it may have grew scar tissue and is pulling the pudendal.He wants me to see another colo-rectal dr,ordered a C-T scan,,some blood tests(he thinks i am still young for not having periods,i am 43),he also found my uterus tilted,and it might e pressing on my rectum and not helping at all.
He prescribed Neurontin i will start with 100 mg a day for 4 days ,then 100 mg twice a day for 4 days,then 300 mg once a day and so on until reaching 900mg.
The only thing that is still confusing to me is the misaligment that i have in my left hip.I am not goiing to continue with pts ,they make me pretty worse,but i don't know where to go with this problem on my hip ,i have one leg shorter due to the hip,should i go to see a orthopedic ?or do i ait for the CT SCAN results?
what makes me even more confused is how if is scar tissue the problem,how will they remove it without creating more scar tissue? and how will they find out if it is scar tissue my main problem ?
I am very confused,for now no more pts(at least during the holidays).


Lara.

Lara,

The Potter MRI would show the scar tissue. Have you been to a good manual PT to get your alignment issues straightened out? Those would be my recommendations.

Hope you have a low-pain day.

cari

Carolyn,
How do i get that mri done ? i am so lost....
God help me!

Lara,
The Potter MRI information is found off the home page by going to the list of doctors, north america., New York and the Hollis Potter has the info and the script your doctor should fax to the office. The appointment may be months away and would require a trip to new york city.
Janet

Janet,
My pcp didn't want to give me the MRI order,i will try with Adashek.
How long did it take neurontin to decrease your pain level? 100 mg are like chewing gum,no diference in pain.
I'LL start 200 mg friday.and by next tuesday i will be in 300 mg.
Hugs.

Lara

Lara,
forr the neurontin I first noticed that it took a monkey/cloud from my back/overhead and I was not as stressed and overwhelmed. I was not sure it was working for pain until one day I was feeling pain and thinking about taking a pain killer and I was ready for my neurontin and taking that helped so I skipped the pain killer. I don't know how long or what level that happened but others may info for you. I am now at 1500mg per day but due to side affects I took a break between the 900 and 1500 and my pain guy said to not go any higher although others I think say it takes more to get the benefit. Everyone again is different. Hugs to you, too. I hope it kicks in a bit for the holidays! FYI my PCP is mostly hands off from this ailment and with Dr Marvel not much past initial recovery I found Adashek to fill the gap, I see him January 3rd for more Government paperwork.
Janet