Health Organization for Pudendal Education

Hi All,
Would like to thank the people responsible for this web site.It has being my life line to sanity.Can some one please help me ,i did read that vitamine e helped someone with female genital pain.Is there any help this is the area that is driving me up the wall.
Thank You
Pain Help

Hi 37light,
Welcome to HOPE! Glad you found us. Vit E may not be your best defense against pain relief. Could you please tell us a little bit more about yourself and your symptoms?
Do you think you have PN(E)?
Kind regards,
Karyn

Hi Karyn,
I had been treated for bladder infection for appromxately 11months.By Feb 2012 i had been on 13 courses of antibiotics, Had a cyscoscopy in Nov 2011,in March 2012 had a pelvic ultrasound and cancer test,during this time i had excruciating pain,espically when i urinated.I used to spend days in bed due to severity of pain.May 2012 was hospilzed due to pain down there and loss of use of one of my legs.On the 4th May 2012 had mri scan ,no abnormalities were found,Dr Van der Merver a neuro surgeon was brought on board to ascess me,on the 8th May 2012 i was diagonised with pudendal neuralgia.I was informed the treatment was nerve block with no gurantees i would probaly need 2-3 nerve blocks with no gurantees!Thus my research began.It has been quiet a struggle i live in South Africa and it has been a challenge finding medical assistance except for the nb, as pn is not a condition that is known.My research on this site has enpowered me.Iam currently on lyrica 2x a day and gen pyne to supplement on very bad days.i need to get my life back.After much reasearch i found a phiso who has done a course on female pn,she has treated one other person so here goes i will be number 2 i start treatment on Monday the 9th May.Having said all this i still need help for you know where do the ice story but what do you do when you not home.

Thank you for responding
pain help

Hi and welcome 37light,
Glad you got your PN diagnosis, that must have been a relief but as you say no guarantees unfortunately.
Most people find that pacing 'activities', sitting as little as possible and an anti depressant say cymbalta can help. You are already doing the rest it seems although I have heard that omega 3 may be beneficial it won't cure pain. I take it but more for all round better health reasons than PN.
I hope that the physio works for you. Many people find it a great help.
Let us know how you get on with it.
Take care,
Helen

Hi 37light,

Just as a matter of interest, did your pain get worse after the cystoscopy?

Because it was after a cystoscopy that I got pain and by the third week was very distressed. Before the cystoscopy I'd not had penile pain of this sort.

I've tried Lyrica and Gabapentin without benefit. But a pain specialist has told me my dose of 900mg daily of Gabapentin was too small to be of any benefit. He wants me on 2800 mgs a day. I only mention this in case the Lyrica dose you're on doesn't help: you may need a higher dose. But I'm not an expert. I'm fairly new to this site as well as still learning.

Cheers

Jackson wrote:Just as a matter of interest, did your pain get worse after the cystoscopy?

Ooooooh! Mine certainly did. Kinda makes sense, though with all the poking around an already irrated structure.
Please keep us informed, 37light about how your treatments are going. I hope you are able to gain benefits and lose some pain.
Regarding the nerve blocks: They're mainly used for diagnostic purposes and not a cure. They may be helpful for someone who has nerve irriation ONLY. But it's important to try determine the cause for the nerve pain.

37light wrote: i still need help for you know where do the ice story but what do you do when you not home.

Do you have access to portable ice packs?
Kind regards,
Karyn

Hi Karyn,

Karyn wrote
Ooooooh! Mine certainly did. Kinda makes sense, though with all the poking around an already irrated structure.

So did the cystoscopy pain ever settle or is it still at the same level? For me, I think the cystoscopy was causal and it's never settled but changed in nature to some extent.

Regards, Jackson

Jackson wrote:I think the cystoscopy was causal and it's never settled but changed in nature to some extent.

Yes, Jackson. That's a very good way to describe it. Luckily, this symptom significantly improved for me after surgery.
Kind regards,
Karyn

Karyn wrote:

Jackson wrote:I think the cystoscopy was causal and it's never settled but changed in nature to some extent.

Yes, Jackson. That's a very good way to describe it. Luckily, this symptom significantly improved for me after surgery.
Kind regards,
Karyn

Hi Karyn,

I just need to nail this cystoscopy issue. Are you saying that your increased level of pain from a cystoscopy lasted right up until your bilateral TG surgery with Dr. Conway?

Cheers Jackson.

Jackson wrote: Are you saying that your increased level of pain from a cystoscopy lasted right up until your bilateral TG surgery with Dr. Conway?

Well, it certainly felt that way. It may have just been the progression of condition. All I know is that in my case, the PN was directly responsible for my bladder pain and dysfunction.