SAD

Welcome to HOPE. We have tried to provide a place for newcomers to make their introductions. We will try our best to make you welcome and guide you through our website and Forum and assist you as best as we can through any questions you have regarding Pudendal Neuralgia.
Lara

SAD

Post by Lara »

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.
susibee
Posts: 60
Joined: Wed Mar 16, 2011 4:12 am
Location: New Hampshire

Re: SAD

Post by susibee »

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.
Vulvodynia diagnosed '01; symptom was occassional vulvar itching/rawness after sex.
Autumn '10, localized clitoral and left labial burning after sex
March '11, new left buttock pain, worsened clitoral/left labial pain/burning.
May '11, increased sitting pain.
Summer '11, pain decreased/plateaued to 0-4/5.
Treatment: 75 mg nortriptyline nightly, definitely helps; PT x 4, didn't really help.
Consults with Hibner and Dellon, left me with questions.
Next step: MRI in NYC or VT.
User avatar
Violet M
Posts: 6679
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:

Re: SAD

Post by Violet M »

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.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
sam
Posts: 98
Joined: Sun Mar 06, 2011 5:43 pm

Re: SAD

Post by sam »

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.
Lara

Re: SAD

Post by Lara »

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.
carolynm
Posts: 465
Joined: Fri Jul 22, 2011 4:25 am
Location: CO

Re: SAD

Post by carolynm »

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
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
Lara

Re: SAD

Post by Lara »

Carolyn,
How do i get that mri done ? i am so lost....
God help me!
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: SAD

Post by janetm2 »

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
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Lara

Re: SAD

Post by Lara »

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
janetm2
Posts: 987
Joined: Sun Jun 12, 2011 10:54 pm
Location: Maryland

Re: SAD

Post by janetm2 »

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
2007-08 pelvic muscles spasms treated by EGS. 6/27/10 sat too long on hard chair- spasms, EGS not work Botox help, cortisone shots in coccyx help, still pain, PT found PNE & sent me to Dr Marvel nerve blocks & MRN, TG left surgery 5/9/11. I have chronic bunion pain surgery at age 21. TG gave me back enough sitting to keep my job & join in some social activities. I wish the best to everyone! 2019 luck with orthotics from pedorthist & great PT allowing me to get off oxycodone.
Post Reply

Return to “WELCOME CENTER”