I Published A Book to Bring Help Awareness to PNE on Amazon

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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby helenlegs 11 » Wed Oct 10, 2012 4:26 pm

Hi Leilaa,
Your acceptance can be viewed as a positive approach, which can be applauded but I hope it will not limit you. The other fact remains that there is hope for improvement and a cure.
You have to remember that many people do recover, partially and fully and then disappear from the forum. They would return if they needed any more help, and don't. There are too many people to name who may be in this category.
If you read Violets signature you will see 80% recovered and although calluna still needs additional treatment, a previous surgery has helped.
Many, many people who have tight pelvic floor muscles can get wonderful therapeutic help and eventual cure from good pelvic physiotherapy, and that's all that is needed.
The next stage may be injections, steroid or botox and there are many newer treatment options to consider too, thankfully.
I would especially say that those with a PN problem without a history of 'trauma' have an excellent chance of recovery. The other good news is that these treatments are usually easily available and less costly.
Hope you can find your own road to recovery soon.
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.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Leilaa » Fri Oct 12, 2012 3:51 pm

... thnx.. u say there r many who partially and fully recovered... surely old members will know who they r... y not drop the links to spread some motivation? Im sure only 1 or 2 recovered members will give more hope to those who r in pain ...this will b better then people saying they improved and in other poles complaining about other symptoms.. u know what I mean? its like going around in cirlcles... Don"t get me wrong when I ask this but ... Are some of u here getting paid for this forum? I"m just wondering.

Also like I said in the other pole I tried mobic and it worked 99% with my pain including rectum and vaginal region... y is it that those who have sex problems not using this painkiller? or if this med does not stop nerve pain y r u guys even taking other similar painkillers.. what is it that u guys r trying to achieve?
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby helenlegs 11 » Fri Oct 12, 2012 8:32 pm

There is a section of success stories Leilaa, and Larry's story on the home page. http://www.pudendalhope.info/node/87 that you can take a look at. Larry was one of those who DID come back to let everyone know that they should not give up hope. I can think of John, Rochelle, Charlie, Fiona and they are just the British people I can think of off the top of my head who have had to have surgery and are feeling a lot better for that.
There will be many, many others who have not even have had to go to the necessity of surgery and are cured or VERY much better.
Some of the people who hang about longer usually have a very difficult presentation of problems and symptoms and therefore take a lot longer to get anywhere near a cure. Their recovery is often a lot more difficult once they have undergone any necessary surgery. Some people have multiple pelvic problems and it can take some time just to try and work out if there is one problem that has set things off or if they have problems that run along side each other. It sometimes can get very complicated unfortunately
I would say that because you have found such fantastic relief from the medication you have taken you would never have to put yourself into the 'difficult presentation' category, which is great :) . I think that as Calluna pointed out if this anti inflammatory drug has given you such good relief the problem may not be PN. I don't know all of your symptoms, but I suppose tissue inflammation could cause a PN pain as a secondary problem. This great result from the medication would mean that the nerve is not actually entrapped as once the inflammation is taken care of the PN symptoms stop . Which is a fabulous outcome :)
No one is getting paid on Hope btw. Many of the other people who hang around (and are much better due to their treatments) just want to help as there is still a struggle to get this PN problem noticed. Thank goodness for them, they work SO hard for us.
Take care,
Helen
Sorry if we have come across as all doom and gloom ;) but there are a lot of success stories and even some fun stuff too.
Helen
Last edited by helenlegs 11 on Sat Oct 13, 2012 1:15 am, edited 2 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.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby calluna » Fri Oct 12, 2012 10:14 pm

Helen is right. And nobody gets paid, not at all.

I am still in pain after this last surgery, yes, and still taking tramadol every day and oxycodone a fair bit as well. But! - I am a heck of a lot better than I was when I found this website! And I am optimistic that I will improve still further, with time.

You ask, why are people taking similar meds to Mobic if it does not help with nerve pain - I don't think they are, actually.

What are we trying to achieve - well, I think that the words on the home page of this website say it very neatly.

"HOPE is a charitable organization that offers support and information to patients who have pudendal neuropathy (PN), pudendal neuralgia (PN), or pudendal nerve entrapment (PNE). If you have come to this website it is probably because you are in pain or you know someone who is in pain. Our goal is that after coming here you will be able to develop a plan of action that will help you get your life back."

We're trying to get our lives back. :)
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Leilaa » Sat Oct 13, 2012 2:46 am

Calluna... actually some people here r taking similar painkillers But Im sure u already know that.

I wasnt asking the purpose of this site soo nevermind


And that link didnt explain a full 100% recovery... U said theres many who fully recovered and partially ... I dont want to know of partial recoveries for now... 1 or 2 links of full recovery... who can sit workout ... have sex... play ... just do normal stuff...

U may be working or not on this site .. u may b even trying to help people here for some time.. but theres people here with real pain seeking urgent help who also cannot make accurate searches to specific links.. so please dont answer the questions saying.. as someone stated already... or if u read ...this or that... I think if people can pass the logging Im sure that most can also read.

Ok I also gathered few of u r pretty good friends . Thats all very nice but real people with real pain
sometimes prefer to ask certain questions .. if u get my drift
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Karyn » Sat Oct 13, 2012 4:58 pm

Leilaa wrote:Ok I also gathered few of u r pretty good friends . Thats all very nice but real people with real pain
sometimes prefer to ask certain questions .. if u get my drift

Hi Leilaa,
I don't get your drift. Could you please explain?
calluna wrote:Helen is right. And nobody gets paid, not at all.

This is true.
Leilaa wrote:but theres people here with real pain seeking urgent help who also cannot make accurate searches to specific links.. so please dont answer the questions saying.. as someone stated already... or if u read ...this or that... I think if people can pass the logging Im sure that most can also read.

There's a lot of information available on this site. As you pointed out, "if people can pass the logging I'm sure that most can also read". When I first came aboard this site, I would read everything I could. I printed pages that were of significant interest to me and made notes on those pages. This way, I had a little background before asking questions and it helped to minimize the redundancy of topics that had already been discussed. You may also find it helpful to click on "View new posts" upon visiting the site. It may help you to keep up with the sheer volume of information put forth on a daily basis.
As Calluna pointed out:
calluna wrote:"HOPE is a charitable organization that offers support and information to patients who have pudendal neuropathy (PN), pudendal neuralgia (PN), or pudendal nerve entrapment (PNE). If you have come to this website it is probably because you are in pain or you know someone who is in pain. Our goal is that after coming here you will be able to develop a plan of action that will help you get your life back."

Leilaa wrote: I dont want to know of partial recoveries for now... 1 or 2 links of full recovery... who can sit workout ... have sex... play ... just do normal stuff...

I think it's important to understand, Leilaa, that it's uncommon to JUST have PN or PNE. So, "full recovery" is sort of a loaded term. The recovery time from surgery and other neuropathic conditions, combined with the fact that quite a few members don't come back to report their results makes it difficult to directly point to full recoveries.
Kind regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby calluna » Sat Oct 13, 2012 6:48 pm

Leilaa wrote:Calluna... actually some people here r taking similar painkillers But Im sure u already know that.

Actually no I didn't know that, and I'm not quite sure what you are implying when you say you are sure I already knew that - but let's not go there. I did not mean to deliberately mislead you.

So that we can try to help you better, do you feel that you could tell us a bit more about yourself and the pain? - how long have you had it? - do you have any idea what might have brought it on? - has your doctor been supportive? And how is the pain today?
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby catherine a » Sun Oct 14, 2012 8:36 am

Leila,

I have come across people (men and women) who have had this pain resolved after 2 years of Phsyiotherapy and pain management. However, they do not wish to come to our forums any more because they'd rather move on with their lives and forget the awful years of painful genitalia. One of them I met in Sydney. He was being treated by Sherin Jarvis. i'll see if I can find his email address for you. perhaps you could email him yourself. Can't remember his name.

It is possible to get better 100%. google Vanessa Frank's name and read her online book. It is possible that your nerve is compressed and not entrapped. If it is, then there is a good chance you'll get 100% better. Unfortunately not many people come back once they get better. Celeste who is a member of this site is also 100% better.

Don't give up hope that one day you too will be cured. Most people here because they're in tremendous pain and looking for information and support from those who understand.

Catherine
2004 PNE following vag. hysterectomy and A & P repair. 2007 TIR surgery France. severe entrapment at Alcocks canal & SS ligaments . Have my life back. 90% cured.No longer have medical appts.or physio.Some pain remains but is tolerable. 2012 Flew from Australia to the UK without pain flare. Very manageable. Almost back to normal. Now hold support group meetings at KEMH Subiaco Perth WA. Every 2nd Sat. of the month. Still pace my activities. PN doesn't dominate any more.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Leilaa » Sun Oct 14, 2012 2:54 pm

KARYN THANK YOU FOR RESTATING EVERYTHING I WROTE.
...oki doki Calluna ... prff

I honestly can"t see the "positive" vibe in this forum. So far (in general) I read what u guys can"t do. And If asking specific questions pple seem to write lame stuff.

For those who r in pain (newbies) after 2 wks I do feel better so maybe people shouldn"t panic so much or be loaded with info as though its a permennt condition (thats depressing) . my vaginal region stopped hurting and my butt has some light pain together with my tailbone which seems to be getting better. The joints feel stiff however the stabbing feelings went away so I hope in few weeks time it"ll b all good..

I had all the symptoms u guys mentioned and cried my eyeballs out thinking Im to b like this forever... I think u guys should keep it down abit. Seriously it only makes people feel depressed and sad.. blocks... surgeries.... years of pain... this is too much for a newbie ... Im just saying... I have no intention to upset anyone ... u guys say things doctors supposed to know.. a new person at this site can flip after reading the info.

U guys mention Amy Steins book ... did any 1 of u try the exercises ...everyday? Well I"ve been doing the stretches everyday 3 times and cardio 30 min & massage.. I dont know if its due to all that but my pain is more like a light back pain now so Im doing well.
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Re: I Published A Book to Bring Help Awareness to PNE on Ama

Postby Karyn » Sun Oct 14, 2012 4:08 pm

Leilaa wrote:KARYN THANK YOU FOR RESTATING EVERYTHING I WROTE.

YOU'RE VERY WELCOME! :D This is how we communicate here to minimize confusion in regards to responses.
Leilaa wrote:...oki doki Calluna ... prff

What does this mean?
Leilaa,
I'm glad you're feeling better and that you've only experienced your pain for 2 weeks. However, most of our members; newbies included, are chronic cases.
If you feel this site is depressing and/or unhelpful, maybe HOPE isn't for you. Please be aware that you're not obligated to visit.
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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