Dr. Echenberg, Bethlaham, PA

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shana
Posts: 121
Joined: Sun Mar 03, 2013 6:24 am

Dr. Echenberg, Bethlaham, PA

Post by shana »

Has anyone treated with Dr. Echenberg and get results? I want to try everything within reason before I decide to do surgery, though I find such intense therapy, as it sounds like Dr. Echenberg is all about, very stressful and I have enough stress. If it works I would try it but I didn't find the people I spoke to at his office very promising, they were actually very vague. I also don't believe that his treatment can work for all forms of pelvic pain/PN/PNE as they made it sound.
Any input would be appreciated
Shana
'08 diagnosed with vulvar vestibulitis
'09 vestibulectomy-Dr. Goldstein-failed
'11 right labral repair and release-Dr. Coleman
2/10-8/12 severe depression, minimal dr appointmen
4 different physical therapists '08-'12 no improvement whatsoever
'13 pudendal nerve blocks-Dr. Chapman
More PT
Dr. Conway officially diagnosed PN/PNE 7/13
9/13 Bilateral hip repair Dr. Coleman
10/13-5/14 Major Depression, no dr appointments
More PT
6/14 Dr. Hibner confirmed diagnosis
Looking for help..hoping for answers
JMIL
Posts: 30
Joined: Mon Mar 25, 2013 3:43 am
Location: Pennsylvania

Re: Dr. Echenberg, Bethlaham, PA

Post by JMIL »

Hi Shana,
I am new to the sight. I have been on it for years, but just finally registered. This is my first post, so I pray I don't make a fool of myself answering your question. I also had a vulvar vestibulectomy by Dr. Goldstein. It was far from successful. He had to do a revision of the original. My burning pain intensified beyond belief. He did not diagnose me with pudendal neuralgia. In fact he completely disagreed it was even a possibility. Thankfully, after years of disabling pain, I found Dr. Echenberg in Bethlehem, Pa. He is a very kind and compassionate man. After around five or six months of pudendal nerve blocks, he referred me to Dr. Conway in New Hampshire. I had my surgery in July 2012. I am still in tremendous amounts of pain and unfortunately now have tailbone and SI Joint pain, but the surgery was worth it because my pudendal nerve was severely entrapped. I need to figure out how to enter all of my history, but until then I wanted to let you know I think you would benefit from an appointment with Dr Echenberg. He is extremely thorough. I was there just over 4 1/2 hours for my initial visit. There is so much else I'd like to say, but for now I hope I've answered your questions. Please feel free to contact me directly. My email address is in my profile. I'd be happy to answer any specific questions you may have. In the meantime, I will try to maneuver my way around to tell my story. Like so many others, it is long and complex. To date I do not have a happy ending, but regardless feel confident you may want to consider seeing Dr Echenberg. It's a 2 1/2 - 3 hour trip for me one way. I need to lie in the back of our vehicle to travel as it's the only way possible. I hope you are relatively close to his office.

Take Care,
Jen
Vulvar burning '06; Dr Goldstein 2 vestibulectomys '09 & '10; 6/09 hysterectomy resulted in 3 add'l surgeries for hemorrahaging; Dr. Marvel diagnose PN recommend surgery; Dr Echenberg '11 diagnose PNE & IC treatments unsuccessful for PNE; Dr Conway TG PN Decompression Surgery in 7/12 still intense vulvar burning & tailbone/SI Joint pain; Dr Santo 3/13 MRI arthritis in SI Joints, SC Joint injection SI Joint Injection 4/13; Dr Gordin Hershey Medical Center 4/13 intrathecal pain pump?
User avatar
helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Dr. Echenberg, Bethlaham, PA

Post by helenlegs 11 »

Hi Jen,
Welcome to hope (even tho you have been here ages ;) ) It's great that you can share this information and even better that you can say such positive things about Dr Echenberg. Doesn't it make such a difference when someone who can make a difference does understand and tries to help. . . . It's a shame that you have not had a better outcome from the surgery. I will not ask you questions here and go off topic but if you would like to tell your story, which I'm sure will help others but is often surprisingly cathartic, as lets face it, the journey through this problem has obstacles and pitfalls peppering the way; putting it all down may even help somewhat.
The welcome centre is designed especially for that, we would love to hear about what has happened and I'm sure the your information will be helpful for others too. I do wish that yours had a happy ending but hopefully that is still to come.
Take care,
Helen
Last edited by helenlegs 11 on Mon Mar 25, 2013 2:38 pm, edited 3 times in total.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
JMIL
Posts: 30
Joined: Mon Mar 25, 2013 3:43 am
Location: Pennsylvania

Re: Dr. Echenberg, Bethlaham, PA

Post by JMIL »

Hi Helen,

Thank you for welcoming me. After all of these years and wanting to reply to so many posts, I'm glad I saw Shana's because it gave me the encouragement I needed. I am sorry...I don't mean to stray from Shana's topic, but I'm wondering if you can guide me to where I go to tell my story and list all of the treatments, procedures, diagnosis', etc. I have always noticed below most responses (such as yours) there is a history of your journey current with where you are today. As many years as I've been visiting your sight, I have never registered, but would like to tell my story now.

I hope I can answer more specific questions Shana has about Dr. Echenberg. Although, she may also get many answered once I tell my story. As so many others, it is a long one, but I do not want to leave out any details.

Thank you for your kindness Helen. I only regret not registering sooner.

Jen
Vulvar burning '06; Dr Goldstein 2 vestibulectomys '09 & '10; 6/09 hysterectomy resulted in 3 add'l surgeries for hemorrahaging; Dr. Marvel diagnose PN recommend surgery; Dr Echenberg '11 diagnose PNE & IC treatments unsuccessful for PNE; Dr Conway TG PN Decompression Surgery in 7/12 still intense vulvar burning & tailbone/SI Joint pain; Dr Santo 3/13 MRI arthritis in SI Joints, SC Joint injection SI Joint Injection 4/13; Dr Gordin Hershey Medical Center 4/13 intrathecal pain pump?
User avatar
helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Dr. Echenberg, Bethlaham, PA

Post by helenlegs 11 »

Well tbh Jen it always surprises me when people come along and have actually made headway without 'chatting' to others on the forum. I know the only way I have found any useful answers is from sites like this, but this one in particular, I have to say.
Anyway, if you take a look at the top of the page here you will see Goto home page, in red. That is where you will find all of the information about symptoms, diagnosis etc. OOps don't think you meant that. . . as to your signature at the bottom of posts and reply's it couldn't be easier, although I am guilty of not updating mine :oops: and wiil do so now you have reminded me.
Go to User Control Panel, just below Board index above, when underlined click on it. This takes you to Overview and Profile etc; you want to be in Profile. Edit signature is in that section on the left. Obviously the signature can be updated (reminder to self ;) )
One tip, if you are writing a longer post or have taken some time getting it all down, copy it before sending as sometimes the system can have signed you out. You will then be instructed to sign in but all of your text sometimes gets lost, very frustrating!!. (I'm sure it's not just me :oops:)
Of course you can do it in stages too, whichever suits best.
Thanks for offering to share your particular tale.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
shana
Posts: 121
Joined: Sun Mar 03, 2013 6:24 am

Re: Dr. Echenberg, Bethlaham, PA

Post by shana »

Jen thanx for your response. What does Dr. Echenberg do different than other PT and nerve blocks as Ive done both. I really have no interest in doing more PT as I've been there done that and had enough it does not help me at all and see no point as going through that any more. I have a relatively local dr doing my nerve block which was successful last time so my question is what does Dr. Echenberg offer that I haven't already gone through
'08 diagnosed with vulvar vestibulitis
'09 vestibulectomy-Dr. Goldstein-failed
'11 right labral repair and release-Dr. Coleman
2/10-8/12 severe depression, minimal dr appointmen
4 different physical therapists '08-'12 no improvement whatsoever
'13 pudendal nerve blocks-Dr. Chapman
More PT
Dr. Conway officially diagnosed PN/PNE 7/13
9/13 Bilateral hip repair Dr. Coleman
10/13-5/14 Major Depression, no dr appointments
More PT
6/14 Dr. Hibner confirmed diagnosis
Looking for help..hoping for answers
Bobby
Posts: 64
Joined: Wed Nov 02, 2011 3:53 pm

Re: Dr. Echenberg, Bethlaham, PA

Post by Bobby »

http://www.pudendalhope.info/forum/view ... =35&t=4792

Nuff said

btw PT is useless without first correctly pelvic floor dysfunction. I explain why in that post
http://www.pudendalhope.info/forum/viewtopic.php?f=35&t=4792&p=35398#p35398
Read this post, it will likely explain everything.
shana
Posts: 121
Joined: Sun Mar 03, 2013 6:24 am

Re: Dr. Echenberg, Bethlaham, PA

Post by shana »

Bobby thank you...been there done that. Just read your post and I've done years and years of pelvic floor therapy I know hiw to relax my pelvic floor and everything else. I'm happy you found something that works for you but its not the same for me. My symptoms did not improve with PT nor did it worsen when I stopped and I went to the best of the best....
'08 diagnosed with vulvar vestibulitis
'09 vestibulectomy-Dr. Goldstein-failed
'11 right labral repair and release-Dr. Coleman
2/10-8/12 severe depression, minimal dr appointmen
4 different physical therapists '08-'12 no improvement whatsoever
'13 pudendal nerve blocks-Dr. Chapman
More PT
Dr. Conway officially diagnosed PN/PNE 7/13
9/13 Bilateral hip repair Dr. Coleman
10/13-5/14 Major Depression, no dr appointments
More PT
6/14 Dr. Hibner confirmed diagnosis
Looking for help..hoping for answers
JMIL
Posts: 30
Joined: Mon Mar 25, 2013 3:43 am
Location: Pennsylvania

Re: Dr. Echenberg, Bethlaham, PA

Post by JMIL »

Shana,

I understood exactly where you are coming from, believe me. Do you have a post with your story? I'm still learning my way around the site. Although I've followed it, I just recently registered. Please forgive me if it's obvious where it's posted. If you'd like you could pm? I'm looking forward to talking with others to see how they manage their pain, etc.

You are exactly right when you said what works for one person may not work for another. I've always believed that. There is no right or wrong when it comes to treatment. If a treatment doesn't work for one of us, it doesn't work, we just move on. I'm going to look for your story to see what therapy and treatments you've already had. I don't want you to waste time commuting if you are currently or have already done the same thing Dr Echenberg offers. You should check out his website as it may be helpful in making your decision. His website is: www.instituteforwomeninpain.com

I hope you find this helpful, but please pm if you'd like.

Take Care,

Jen
Vulvar burning '06; Dr Goldstein 2 vestibulectomys '09 & '10; 6/09 hysterectomy resulted in 3 add'l surgeries for hemorrahaging; Dr. Marvel diagnose PN recommend surgery; Dr Echenberg '11 diagnose PNE & IC treatments unsuccessful for PNE; Dr Conway TG PN Decompression Surgery in 7/12 still intense vulvar burning & tailbone/SI Joint pain; Dr Santo 3/13 MRI arthritis in SI Joints, SC Joint injection SI Joint Injection 4/13; Dr Gordin Hershey Medical Center 4/13 intrathecal pain pump?
bamboo
Posts: 21
Joined: Sat Apr 30, 2011 4:23 pm

Re: Dr. Echenberg, Bethlaham, PA

Post by bamboo »

I was wondering if anyone knows if Dr. Echenberg's main concentration/treatment for the pain of p.n. is physical therapy. I've been debating on getting an appt. with him but if that is his main emphasis I've been thru that too many times to know that it's not the answer. Plus there is no one close enough that I could go regularly anyway.

I've seen Dr. Whitmore in Philadelphia and that's my other option - to get Botox done by her. Dr. Echenberg sounds like a very nice, compassionate doctor but after all this time, I need some options for pain control and/or more capacity to live my life more fully.

I would appreciate any and all advice or answers from anyone who has seen Dr Echenberg, as to whether he was able to help them, either with nerve blocks, botox, pain meds, etc.

Thanks in advance for any replies.

Wishing a better day for us all.

Bamboo
Last edited by bamboo on Sat Apr 06, 2013 5:45 am, edited 1 time in total.
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