New here, 18 and extremely worried

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.
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Violet M
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Joined: Mon Sep 06, 2010 6:04 am
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Re: New here, 18 and extremely worried

Post by Violet M »

Tension or spasm of the psoas muscle can cause abdominal symptoms too.
Just one more thing to consider.

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.
travelisdangerous
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Joined: Fri Oct 10, 2014 6:15 am

Re: New here, 18 and extremely worried

Post by travelisdangerous »

Had this for nearly a month now and sitting pain is definitely getting worse. Going to another GP soon now they have ruled out infection, hopefully things will get moving a bit more.

Also out of interest, if I decrease my sitting time and be careful with the nerve e.g no weight lifting or anything that would tense pelvic muscles, could this possibly sort itself out? I haven't seen any stories on the forum where this has happened but I know there are people and doctors that say this can heal after a while. Or am I being too optimistic?

This is completely ruining my university experience, can't believe this happened three weeks after getting here!
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Violet M
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Re: New here, 18 and extremely worried

Post by Violet M »

Lifestyle changes work for some people but if it is a nerve problem, you just have to remember that it takes time for the nerves to heal. One of Dr. Antolak's recommendations to PN patients was to make lifestyle changes. There was a guy on our old pudendal.info forum who improved significantly from lifestyle changes. You can also read KrisG's story on this forum. He recently posted in the success section of the forum. http://www.pudendalhope.info/forum/view ... =74&t=6221

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.
travelisdangerous
Posts: 35
Joined: Fri Oct 10, 2014 6:15 am

Re: New here, 18 and extremely worried

Post by travelisdangerous »

I really hope my story can end like Kris's story!
Just thought I'd post a quick update, just seen a gp at my university city and she was brilliant! Had never heard of pudendal neuralgia but listened very carefully to my symptoms and when I mentioned PN she straight away googled the symptoms and started to read them. She then wrote 'pudendal neuralgia?' In her notes.

I'm having some sort of scan done and she's also referred me to a pain clinic where Dr De mello works. My urinary symptoms seemed to have improved but my pain and discomfort is definitely getting worse. I think also the fact this has been going on for a month now also helped prove my point.
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ezer
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Joined: Sun Sep 19, 2010 6:53 am

Re: New here, 18 and extremely worried

Post by ezer »

travelisdangerous, I don't know why you are fixated on pudendal neuralgia which is a very low probability. If your GP does not know pudendal neuralgia it is because it is pretty rare.
The bulk of pathologies that should be checked first are in the urological realm and should be reviewed by an experienced urologist. Have you mentioned non-bacterial or bacterial prostatitis to her? azythromicin will not kill the bugs in the prostate. Only the quinolones (levaquin, cipro) will because they penetrate the prostate.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
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Amanda
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Re: New here, 18 and extremely worried

Post by Amanda »

Hi travelisdangerous

Im sorry to hear of your pain and disruption to what should be an exciting time with University life etc.
You have been given lots of very useful information from others here, it is a difficult time and I agree that relaxation is the key here as tense muscles etc are not good at the moment.
I was pleased to hear that your new GP has referred you to Dr W. De Mello, he is an excellent doctor who specialises in Pelvic Pain. He heads up a multi disciplinary clinic - meaning they have all disciplines of medicine available. So you should be able to get great advice in Urology etc.
If you look up his website you will find his approach to pain is very broad spectrum, he is definitely a caring doctor who will try to help you out.
In fact normally patients would have to wait a long time to get to the stage you are at in the UK so you were lucky to find this GP.
I have been to him several times and also met him in Nantes a few years ago. I am currently in the UK so if you would like to pm or email me, I can give you more details about this doctor.
Take care.
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
travelisdangerous
Posts: 35
Joined: Fri Oct 10, 2014 6:15 am

Re: New here, 18 and extremely worried

Post by travelisdangerous »

Hi, just thought I'd post here again because I'm really not sure what to do. My pain is definitely getting worse and I'm assuming all the sitting I'm doing at university isn't helping. Feeling pretty hopeless at the moment and not sure what to do.

My gp has sent me to a neurologist but have not heard from them yet so not sure what is going on. I just really want to know if this can actually heal, especially as my nerve can't have been irritated for long? Anyway feeling very down about this, I thought it may have gotten better in two months.
Bertie
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Joined: Sat May 24, 2014 8:50 am

Re: New here, 18 and extremely worried

Post by Bertie »

Hi......appointments can take a while to come through, ring your GP and check it has been sent and to whom, you can then ring up the uros specialist secretary and see if she can give you an idea of when you will get your appointment. The maximum wait is I belive 18 weeks. But I would be off to Dr Baronowski soon as. If it helps I am hugely better than I was in January this year, sitting is no good for you at the moment, do you have long lectures? Try sitting on your leg if that makes sense, so the side that hurts sit on your ankle, if it is both sides that hurt then a special cushion, but I understand at your age at uni you might be embarrassed. You also have to remember that a lot of uros don't know about nerves, also I have read recently that gynacologists are starting to see men as they are the ones that no about pelvic pain more, although most of those don't know a lot about nerve pain as believe it or not unless they choose to do an extension on there medical degree they also are not taught about nerves. Absolute madness.
travelisdangerous
Posts: 35
Joined: Fri Oct 10, 2014 6:15 am

Re: New here, 18 and extremely worried

Post by travelisdangerous »

I do a course involving computers, the whole course involves sitting, its only three times a week but one of the day's I'm sat from 9 til 4:30. I really don't want to have to quit uni or anything.
Bertie
Posts: 49
Joined: Sat May 24, 2014 8:50 am

Re: New here, 18 and extremely worried

Post by Bertie »

Is it possible to stand for part of the long lectures, I am hugely better than I was but I would never be able to sit that long even before all this PN stuff, sitting for long periods is so bad for us. I can do two hours now pain free tops, but I won't push my luck with any longer.
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