Could this be it?

Many physical activites such as sports, pelvic surgery, etc can all contribute to PN
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Johannats
Posts: 1
Joined: Fri May 09, 2014 1:13 am

Could this be it?

Post by Johannats »

Hello everyone, I need to find some peace on what Ive been feelig lately.
About two weekd agoI started feeling a weird sensation in my perineal area started out as a slight burning sensation.
This started ti intensify as days passed. When seating I feel as my buttocks and perineal area hurt and are burning and if i touch the skin, It doesn't really hurt. Sometimes i cjeck the area to see if its red or if it has a lesson, nut nothing.
I feel much better in the morning, but as the day passes the burning feeling sometimes turns into pain, witch is relived somehow when I stand up. I sometines get like a sciatica on my feet at night. Sometimes the pain extends to my tailbone. If I seat in the toilet there is a relief.
I have not had any accidents or medical conditions, otger than having hemorrhoids (that were treated 8 months ago) . I am driving myself crazy because this is also very embarrassing for me. My husbands thinks this is all in my mind, could I be causing this? Im miserable: (
I would really appreciate feedback.
Positivepoppy
Posts: 174
Joined: Mon Feb 24, 2014 2:49 am
Location: uk

Re: Could this be it?

Post by Positivepoppy »

I am no expert but I will say listen to your body, there is a reason you are in pain and its certainly not in your mind. Your symptoms do not sound unfamiliar and I was diagnosed with PNE but life is never that simple. Not sure where you are based but try and find someone that understands this condition.
I wish you lots of luck and best wishes
Laramarie

Re: Could this be it?

Post by Laramarie »

Hi Poppy
Can you tell us how your experience was with physiotherapy yesterday? As you know, I am 5 months post op left side TG surgery and had to stop physio 3 months ago because I was experiencing terrible pain. What did the physio do for you and how are you feeling today? I am booked for 2 nerve blocks in 3 weeks with Dr Hibner and then I restart physio the beginning of July. Hope you are feeling well.....

Lara
Laramarie

Re: Could this be it?

Post by Laramarie »

Poppy
I read your physio update under "Uk and Ireland".... Thank you for posting that. Can I ask you where you ordered the Tens and what the price is? Is your flare any better today?

Lara
Positivepoppy
Posts: 174
Joined: Mon Feb 24, 2014 2:49 am
Location: uk

Re: Could this be it?

Post by Positivepoppy »

Bought the TENS on EBAY for £26-99
My pain has intensified throughout the day but I've probably overdone things, back on settee with ice bag but always am. How are you doing how's your pain at the moment any progress? I have booked to have some massages and some AMATSU sessions, had these prior to surgery and did help a little
Positivepoppy
Posts: 174
Joined: Mon Feb 24, 2014 2:49 am
Location: uk

Re: Could this be it?

Post by Positivepoppy »

Bought the TENS on EBAY for £26-99
My pain has intensified throughout the day but I've probably overdone things, back on settee with ice bag but always am. How are you doing how's your pain at the moment any progress? I have booked to have some massages and some AMATSU sessions, had these prior to surgery and did help a little
Laramarie

Re: Could this be it?

Post by Laramarie »

Hi Poppy
My pain is still burning in the perineum but it is getting a little better. My surgeon thinks the nerve block will target the perineal nerve and help to calm it down and relieve the pain so it can continue to heal. I am sorry that your surgeon isn't offering you any type of help for you pain? I have been started on Topamax and I think that is starting to help as well. If the blocks aren't successful, I can also try some IV infusions of lidocaine.
Where exactly do you place the Tens? How often are you supposed to use it?

Lara
Positivepoppy
Posts: 174
Joined: Mon Feb 24, 2014 2:49 am
Location: uk

Re: Could this be it?

Post by Positivepoppy »

Hi I'm glad you are receiving treatment and hope and pray it works for you.
With regards to the TENS the physio is going to show me actually where to place it during next session. It is my understanding that it is placed each side of the spine middle and bottom but will post more when I know.
Take care
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
Location: United States
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Re: Could this be it?

Post by Violet M »

Johanna, it's common for physicians and family members to blow this off and make you feel like it's in your head but don't let anyone tell you that. Maybe you can ask your husband to read this letter on the forum and hopefully he will understand better. http://www.pudendalhope.info/forum/view ... =25&t=4874

If it's possible for you to get to one of the physiotherapists trained in treating people with PN that might be a good place for you to start.

Best,

Violet
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.
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