Vulvodynia

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Re: Vulvodynia

Postby helenlegs 11 » Thu Oct 18, 2012 12:05 am

I have heard such a lot of similar comments about Dr Filler Janet, but I have got to say that the man is very nice.
When he examined me, he did it thoroughly and did know what he was doing and what he was talking about.
He didn't do any Gynaecological type of examination however and I think really to get a good pudendal examination, especially if the problem is pudendal only, there needs to be a gynaecological examination. However my main problem IS with my piriformis muscle and the nerves entrapped at that muscle so he did all that was needed for me, in my opinion. He may do a gynaecological examination for patients who only have pudendal nerve problems, I don't know for sure though.
I did not have his imaging or a Filler MRN. It wasn't available in London then.

The scan I had was not very good one, only a 1Telsa and done through http://www.umediagnostics.com/ in Harley Street London. I did not know that there was any thing better than this scan at that time (over 2 years ago). This imaging may have improved now but again I don't really know, sorry.
There are quite a lot of doctors who don't accept that imaging is very much help with a PN diagnosis, that is the trouble.
You could end up spending a lot of money and not get any answers. However, with what is available a Hollis Potter scan in New York or a Filler MRN seem to be the best on offer.
I think that Dr Filler would usually want a patient to have a nerve block to help further diagnose an nerve problem but at least he does any block guided with his MRN imaging (so I have read) But it is always the patients decision to have a block or not of course.
I am so sorry that you have had this problem from the nerve block in Italy and can understand the reason why you wouldn't want another.
I have no idea how much the scan and examination is from Dr Filler or when his next clinics are but you will be able to find out from http://www.nervemed.com/
I have also heard that Dr Filler tends to diagnose piriformis syndrome all of the time too. He did with me, but for me, he did get it right, as all of my follow up treatment (botox and physiotherapy) have confirmed.
It is a very difficult thing to advise anyone about mainly because of the bad press that Dr Filler does get. All I can say is that he is very nice and did seem to know what he was talking about, for my problems at least so I can not fault him.
I would definitely recommend him without hesitation, if the cost wasn't so high but I think it is very expensive, so I must reserve judgement.
The only thing to add is that at least you will get a scan AND an examination based upon the scan findings with Dr Filler. This is where the other scans (like Hollis Potter) are not so good or so complete, as they only rely on what can be seen (sometimes nothing) But a good clinical ' hands on' examination (especially with additional help of imaging) is very much the best way to try to find the problem . At least you do get this from Dr Filler. You will be able to find out about how long the Filler scan and examination will take on the nervemed web site. They will also be able to give you costs. I have heard that you can 'haggle' the price down too ;)
It will be difficult for you even after an examination, as most doctors would wish to follow this with a diagnostic/theraputic block.
The only other thing I could suggest is looking at this presentation by Dr Antolak. http://www.perineology.com/files/ics-gl ... gnosis.pdf
He does say in this presentation that diagnosing PN is easy now and he does not use imaging. I am sorry if this just confuses things more. I am sure that Dr Beco (Belgium) does a similar examination for PN diagnosis. I think that Professor Robert in Nantes France uses a gynaecological examination alone as well and at the moment there is no imaging that the Nantes team think is useful.
Dr Tibet in Turkey is another to consider perhaps, although he is a lot newer to the decompression surgery and I am not sure that he has been tried and 'tested' quite enough yet.
I am just trying to go through other options for you.
I can understand your dilemma and your need to find some answers. Sorry I can not help more. There is no 1 good answer :(
Have you been to any really good pelvic physiotherapists at all?
Let us know what you decide to do. I hope everything works out well. Let us know.
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: Vulvodynia

Postby andres123 » Sun Jul 02, 2017 2:22 am

Hello, the vulvodynia as you describe it is an uncomfortable pain and uncomfortable at the level of the pelvis this is due to many factors among them we can emphasize: infection by fungi, irritation by chemicals like intimate soaps, laser treatments, diabetes, among others.
Each of the causes of this disease have a different treatment, it is important to seek information about it, in this website I got very important information about this disease https://infotratamiento.com I hope it is your help
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Re: Vulvodynia

Postby Violet M » Mon Jul 03, 2017 1:59 pm

Andres, I don't know who sponsors that website you linked to. Instead of clicking on your link, I opened it in sandboxie since you have only posted once on this forum and I wasn't sure if it was a safe website. I discovered that it is in Spanish so I put it into google translate and this is what it says about the causes of vulvodynia.

"The exact causes are not known precisely, there are several theories that suggest a multifactorial origin, that is to say, there is not a single cause that would explain the vulvodynia. Vulvodynia has features that make it similar to chronic neuropathic pain, although there is no injury to the nerves. In chronic neuropathic pain, the nerves in the nerves responsible for pain are affected and transmit the pain signal more intensely than it should. Other researchers believe that there may be a psychological explanation, in which the personality of the woman linked to certain emotional experiences would affect the perception of pain...."

Similar to neuropathic pain although there is no damage to the nerves? Psychological due to the personality of the woman? Sorry, but I don't believe those explanations. At least for me and many other women, neither one of those are correct. I'm fine now after having the nerve released from entrapment and it had nothing to do with anything psychological. One of the reasons I stay on this forum is to help dispel those types of myths.

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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