Hi I'm New

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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Belle67
Posts: 5
Joined: Fri Nov 11, 2011 9:18 am
Location: South West U.K

Hi I'm New

Post by Belle67 »

Hi
I'm new to forums and such like so I hope i'm doing this right.
I was told about this site by a very kind lady in America, I suffer from PGAD and at the moment I am finding it really hard. At first after reading the symptoms of P.N i thought that it wasn't a part of what I have but after spending today trying to get my medical history down on paper and remembering a lot more than previously, I think maybe it is. :(

I am off to London tomorrow to see a Dr Goldmieir who has written papers on PGAD, I have decided to go private because the waiting list is 16 weeks long and at the moment that seems like a life time ( well thats what credit cards are for ;) ) I have to get the train and I know its not going to be pleasant especially as i've had a bad day today.

I just want to say thank you in advance to anyone who has already posted, finding this site along withe the pgad support group has kept me going over the past week since i found them.

Belle
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Hetty
Posts: 25
Joined: Tue Nov 01, 2011 10:58 am
Location: ireland

Re: Hi I'm New

Post by Hetty »

Hi Belle
I am new here too and it is a great website.
Hope your visit to London is a success and the journey is not too painful.
Hetty
Have had 3 nerve blocks and am nearly pain free !
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Belle67
Posts: 5
Joined: Fri Nov 11, 2011 9:18 am
Location: South West U.K

Re: Hi I'm New

Post by Belle67 »

Hi Hetty and Thankyou

My trip to London went ok, except for I passed out on the train on the way there. Mornings are always bad for me and such an early start didn't help but the train staff were amazing.
Dr Goldmier explained a lot and too be honest it was such a relief to talk to a doctor who understood what i was saying and didn't just dismiss what I have been feeling.
He has diagnosed PGAD and feels I may have P.N as well so I will be having an MRi as soon as it can be arranged on the NHS. He has also started me on Vanafalaxine and told me about Mindfulness which i am downloading as i type and I will be listening too later. He also talked about seeing a pelvic physio at some point.
So although the journey was stressful and I am now suffering, I feel it was worth it.

Thankyou again
Belle
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JeanieC
Posts: 198
Joined: Tue Sep 21, 2010 11:47 pm

Re: Hi I'm New

Post by JeanieC »

Hi Belle,

Welcome to the forum, but sorry for your reason to be here. You have found an excellent resource a for information and supportive people. I am interested in mindfulness too, and went to a lecture on it last week (sitting in my zero gravity chair) Could you tell me what you are downloading?

Best wishes,

Jeanie
Diagnosed with left side PN by Dr Renney, March 2010, after over 2 years of searching for help
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain
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deBBieW
Posts: 162
Joined: Tue Oct 25, 2011 2:59 am
Location: Milwaukee, Wis

Re: Hi I'm New

Post by deBBieW »

Hi Belle,
I hope your "flare" goes away quickly, I so know what you mean about talking to anyone, doctor or otherwise, that understands! When I first met my physical therapist, a pelvic floor therapist, I just wanted to kiss her! she got a hug instead.
I have only been on this site about a month, but I cannot tell you how much I have learned, and I see very caring people here, so welcome!

Debbie
Vag pain, leg burning 3/11, SIJ inj 7/11, Pelvic PT, Chiro/acupuncture,
2-CT pudendal blks 11/2012, did help, less deep vag pain
Potter MRI 04/2012 - Scar tissue/thickening at SS/ST, scar in Alcock canal -bilateral,
Hibner 6/12 suggests Botox (didnt do), 8/12 more pelvic PT w/ dry needling
Gabapentin 1800 mg, Lyrica 200 mg, 5mg valium, vicodin as needed
Trying to get rid of central sensitization burning pain in my legs, Valium seems to be helping
Looking into more mindfulness options. . . . .
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Hetty
Posts: 25
Joined: Tue Nov 01, 2011 10:58 am
Location: ireland

Re: Hi I'm New

Post by Hetty »

Hi Belle
Good to know you've found someone who understands and is listening :)
I've not hear of "mindfulness" is it some form of relaxation ?
Would love to know more ! Am going to a hypnotist this week to see how that can be used as part of pain management.
Take care of yourself
Hetty x
Have had 3 nerve blocks and am nearly pain free !
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Belle67
Posts: 5
Joined: Fri Nov 11, 2011 9:18 am
Location: South West U.K

Re: Hi I'm New

Post by Belle67 »

Hi Everyone

Mindfulness is a type of meditation and I downloaded Mindfulness for beginners from iTunes it was around £7.00, but it is available through Amazon at around the same price.
I started last night and found it relatively easy and will do some more later today.
I also started the Venafalaxine last night 75mg but woke up feeling so sick in the middle of the night and very wobbly this morning...does anyone know if this is normal with this medication as i'm dreading taking it again tonight.

Belle
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Violet M
Posts: 6714
Joined: Mon Sep 06, 2010 6:04 am
Location: United States
Contact:
Contact Violet M

Re: Hi I'm New

Post by Violet M »

Hello Belle,

Welcome to the forum. You may find this thread helpful. http://www.pudendalhope.info/forum/view ... =48&t=1590

Take care,

Violet M
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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carolynm
Posts: 465
Joined: Fri Jul 22, 2011 4:25 am
Location: CO

Re: Hi I'm New

Post by carolynm »

Welcome Belle! You are amongst friends................

cari
PN after using pickaxe doing yardwork 6/11
Potter MRI: Scar tissue abutting L pudendal.
Hibner consult 10/11 w/ plan: 2 mo. PT
No meds work for me
PRF X 3 times in Denver ( was pain free for 5 months after second)
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Hi I'm New

Post by helenlegs 11 »

Hello Belle,
Welcome. Waving at you from the north east of England :) . There is a very good Dr. in the Bristol area for Pn btw if that would be an easier journey for you? there is also a list of physios for UK and Ireland on the home pages. I have not heard of Dr Goldmeir, I take it this is him? http://www1.imperial.ac.uk/medicine/people/d.goldmeier/ You have added a new name to PN aware/diagnoser to the list already. Good one.
I hope that physio or whatever other conservative treatment and medication you undertake helps you.
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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