I recently asked my Pain Management counselor if i could break my patient confidentiality with her in order that she might put me in touch with someone else locally who has a vulva pain problem like i do.
She agreed to this and this week told me that she has another patient interested in contacting me - this person is just thinking about it a bit more at the moment but i am hopeful that something will go ahead.
This idea to break confidentiality came from Her Majesty on here - i wouldn't have thought of it myself - now i may have the chance not to feel so alone with this pain and this person may feel the same also. There are no support groups advertised at the pain management clinic and you just become an individual going to different appointments on your own crusade.
Just thought i would mention it on here as others may want to try to do the same - and Thanks to Her Majesty for the idea.
Rosemary
Meeting others
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purplequest
- Posts: 2
- Joined: Sun May 19, 2013 7:40 pm
Re: Meeting others
Rosemary,
If you go to the vulval pain society (uk based) website and click on 'further help' and then 'support groups', you can hopefully find a group that meet in your area. While they don't just cover PN issues, they do have people with PN issues, too, so could be worth going to?
http://www.vulvalpainsociety.org
Good luck.
If you go to the vulval pain society (uk based) website and click on 'further help' and then 'support groups', you can hopefully find a group that meet in your area. While they don't just cover PN issues, they do have people with PN issues, too, so could be worth going to?
http://www.vulvalpainsociety.org
Good luck.
Re: Meeting others
Thank you Purplequest - nothing definite in my area shown but i will follow up one lead from that list next week.
Rosemary
Mon am - No joy i'm afraid but gives me some incentive now to start up a support group.
Rosemary
Mon am - No joy i'm afraid but gives me some incentive now to start up a support group.
Re: Meeting others
@rosemary- i'm in london, I go to those meetings as well.
tiny bartholin infection triggered vulvar nerve pain.
Diagnosed vulvodynia Sept '13 (no burning but electric shocks, paresthesia, aching, buzzing)
Feb 14- Taking 50 mg Ami/Elavil
May 14-pain free with 50 mg Amitriptyline and 300 mg Pregabalin. Back to normal
Dec 15- weaned off all medication, pain free, wearing skinny jeans
April 17- pain returned, Amitriptyline 50 mg. Something doesn't make sense in my diagnosis.
Currently treating depression and anxiety
Diagnosed vulvodynia Sept '13 (no burning but electric shocks, paresthesia, aching, buzzing)
Feb 14- Taking 50 mg Ami/Elavil
May 14-pain free with 50 mg Amitriptyline and 300 mg Pregabalin. Back to normal
Dec 15- weaned off all medication, pain free, wearing skinny jeans
April 17- pain returned, Amitriptyline 50 mg. Something doesn't make sense in my diagnosis.
Currently treating depression and anxiety
Re: Meeting others
Hi Mary Jane
Glad that you have a support group nearby.
I am now in contact with someone locally in a similar situation to myself - it makes a big difference to know someone who understands - both help each other to cope with it.
I had a small Bartholins cyst and an anal operation together at the same time which i think may have contributed somewhere to my now vulva pain.
Hope today is a better day for you. Take care
Rosemary x
Glad that you have a support group nearby.
I am now in contact with someone locally in a similar situation to myself - it makes a big difference to know someone who understands - both help each other to cope with it.
I had a small Bartholins cyst and an anal operation together at the same time which i think may have contributed somewhere to my now vulva pain.
Hope today is a better day for you. Take care
Rosemary x
Re: Meeting others
@rosemary
did you lance the bartholin cyst or did you have it removed ? the darn gland is innundated by the pudendal nerve branches...this is why mine is causing me PN symptoms/pain
did you lance the bartholin cyst or did you have it removed ? the darn gland is innundated by the pudendal nerve branches...this is why mine is causing me PN symptoms/pain
tiny bartholin infection triggered vulvar nerve pain.
Diagnosed vulvodynia Sept '13 (no burning but electric shocks, paresthesia, aching, buzzing)
Feb 14- Taking 50 mg Ami/Elavil
May 14-pain free with 50 mg Amitriptyline and 300 mg Pregabalin. Back to normal
Dec 15- weaned off all medication, pain free, wearing skinny jeans
April 17- pain returned, Amitriptyline 50 mg. Something doesn't make sense in my diagnosis.
Currently treating depression and anxiety
Diagnosed vulvodynia Sept '13 (no burning but electric shocks, paresthesia, aching, buzzing)
Feb 14- Taking 50 mg Ami/Elavil
May 14-pain free with 50 mg Amitriptyline and 300 mg Pregabalin. Back to normal
Dec 15- weaned off all medication, pain free, wearing skinny jeans
April 17- pain returned, Amitriptyline 50 mg. Something doesn't make sense in my diagnosis.
Currently treating depression and anxiety
Re: Meeting others
Hi Mary Jane
I had antibiotics at the time for the cyst - my vulva in general is still painful though and around the Bartholins - muscles at the back of the vulva quite tight too -i can't sort the woods from the trees anymore as to what is going on now.
The thought of a possible Bartholins operation within weeks of my anal op caused me a lot of stress at the time and i rubbed my vulva quite hard which has given me some of my nerve irritation problems now. Too much down there that you can't see when it comes to having an operation - afraid i just didn't hack it.The anal op may have upset some nerves - having the cyst may not have helped - who knows ?
I am taking Nortriptyline and Gabapentin for the pain.
Rosemary x
I had antibiotics at the time for the cyst - my vulva in general is still painful though and around the Bartholins - muscles at the back of the vulva quite tight too -i can't sort the woods from the trees anymore as to what is going on now.
The thought of a possible Bartholins operation within weeks of my anal op caused me a lot of stress at the time and i rubbed my vulva quite hard which has given me some of my nerve irritation problems now. Too much down there that you can't see when it comes to having an operation - afraid i just didn't hack it.The anal op may have upset some nerves - having the cyst may not have helped - who knows ?
I am taking Nortriptyline and Gabapentin for the pain.
Rosemary x
Re: Meeting others
rosemary,
My pain was caused by this stupid gland, and trust me, you do NOT WANT IT REMOVED! This gland is innervated by the pudendal nerve, some women actually got pudendal neuralgia as a result of the gland excision.
if it hurts you at the bartholin gland opening ( like in my case), I think it's called vulvar vestibulitis, where the gland becomes chronically inflamed or similar.
I'm telling you this gland is from hell! Even when you have a super small cyst, it can be pea-sized, you can still get STABBING PAINS !
My pain was caused by this stupid gland, and trust me, you do NOT WANT IT REMOVED! This gland is innervated by the pudendal nerve, some women actually got pudendal neuralgia as a result of the gland excision.
if it hurts you at the bartholin gland opening ( like in my case), I think it's called vulvar vestibulitis, where the gland becomes chronically inflamed or similar.
I'm telling you this gland is from hell! Even when you have a super small cyst, it can be pea-sized, you can still get STABBING PAINS !
tiny bartholin infection triggered vulvar nerve pain.
Diagnosed vulvodynia Sept '13 (no burning but electric shocks, paresthesia, aching, buzzing)
Feb 14- Taking 50 mg Ami/Elavil
May 14-pain free with 50 mg Amitriptyline and 300 mg Pregabalin. Back to normal
Dec 15- weaned off all medication, pain free, wearing skinny jeans
April 17- pain returned, Amitriptyline 50 mg. Something doesn't make sense in my diagnosis.
Currently treating depression and anxiety
Diagnosed vulvodynia Sept '13 (no burning but electric shocks, paresthesia, aching, buzzing)
Feb 14- Taking 50 mg Ami/Elavil
May 14-pain free with 50 mg Amitriptyline and 300 mg Pregabalin. Back to normal
Dec 15- weaned off all medication, pain free, wearing skinny jeans
April 17- pain returned, Amitriptyline 50 mg. Something doesn't make sense in my diagnosis.
Currently treating depression and anxiety
Re: Meeting others
@ Rosemary
what kind of pain do you have in the vulva? is it stabbing, electric shocks ?? I have that, but zero burning. I am on 20 mg Amitriptyline and the pain has FINALLY, after 9 long weeks, calmed down 50%. I can wear knickers again ! But I'm scared it will come back
I have a vibrating feelling in my right buttock and sore muscles everywhere
what kind of pain do you have in the vulva? is it stabbing, electric shocks ?? I have that, but zero burning. I am on 20 mg Amitriptyline and the pain has FINALLY, after 9 long weeks, calmed down 50%. I can wear knickers again ! But I'm scared it will come back
I have a vibrating feelling in my right buttock and sore muscles everywhere tiny bartholin infection triggered vulvar nerve pain.
Diagnosed vulvodynia Sept '13 (no burning but electric shocks, paresthesia, aching, buzzing)
Feb 14- Taking 50 mg Ami/Elavil
May 14-pain free with 50 mg Amitriptyline and 300 mg Pregabalin. Back to normal
Dec 15- weaned off all medication, pain free, wearing skinny jeans
April 17- pain returned, Amitriptyline 50 mg. Something doesn't make sense in my diagnosis.
Currently treating depression and anxiety
Diagnosed vulvodynia Sept '13 (no burning but electric shocks, paresthesia, aching, buzzing)
Feb 14- Taking 50 mg Ami/Elavil
May 14-pain free with 50 mg Amitriptyline and 300 mg Pregabalin. Back to normal
Dec 15- weaned off all medication, pain free, wearing skinny jeans
April 17- pain returned, Amitriptyline 50 mg. Something doesn't make sense in my diagnosis.
Currently treating depression and anxiety
Re: Meeting others
Hi Mary Jane
Sorry that you have had this Bartholins op and are in pain as a consequence.The op does not look pleasant -certainly spooked me just looking on the internet about it.
My pain varies from burning, often one sore spot around the Bartholins, shooting pains up through the vulva to the mons pubis, a feeling like a knitting needle sticking in me (around the Ischial spine) , itching, generally feeling inflamed and tight muscles in that side of the vulva.
An acupunturist i saw said that pains can sometimes come from just having a Bartholins cyst.
I have been attending a pain clinic and have had some pain phsycology sessions which have helped me a lot to get things in perspective and cope with it.
I only wear underwear if i have to - trousers are now out. I am 58 and postmeno which i don't think helps everything either.
Glad that you are feeling a bit better - Take care
Rosemary x
Sorry that you have had this Bartholins op and are in pain as a consequence.The op does not look pleasant -certainly spooked me just looking on the internet about it.
My pain varies from burning, often one sore spot around the Bartholins, shooting pains up through the vulva to the mons pubis, a feeling like a knitting needle sticking in me (around the Ischial spine) , itching, generally feeling inflamed and tight muscles in that side of the vulva.
An acupunturist i saw said that pains can sometimes come from just having a Bartholins cyst.
I have been attending a pain clinic and have had some pain phsycology sessions which have helped me a lot to get things in perspective and cope with it.
I only wear underwear if i have to - trousers are now out. I am 58 and postmeno which i don't think helps everything either.
Glad that you are feeling a bit better - Take care
Rosemary x