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
can someone suggest pain relief
Re: can someone suggest pain relief
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
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
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: can someone suggest pain relief
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
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
-
helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: can someone suggest pain relief
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
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
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.
Re: can someone suggest pain relief
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
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
Last edited by Jackson on Mon Jul 09, 2012 1:55 am, edited 1 time in total.
Re: can someone suggest pain relief
Ooooooh! Mine certainly did. Kinda makes sense, though with all the poking around an already irrated structure.Jackson wrote:Just as a matter of interest, did your pain get worse after the cystoscopy?
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.
Do you have access to portable ice packs?37light wrote: i still need help for you know where do the ice story but what do you do when you not home.
Kind regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: can someone suggest pain relief
Hi Karyn,
Regards, Jackson
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.Karyn wrote
Ooooooh! Mine certainly did. Kinda makes sense, though with all the poking around an already irrated structure.
Regards, Jackson
Re: can someone suggest pain relief
Yes, Jackson. That's a very good way to describe it. Luckily, this symptom significantly improved for me after surgery.Jackson wrote:I think the cystoscopy was causal and it's never settled but changed in nature to some extent.
Kind regards,
Karyn
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Re: can someone suggest pain relief
Hi Karyn,Karyn wrote:Yes, Jackson. That's a very good way to describe it. Luckily, this symptom significantly improved for me after surgery.Jackson wrote:I think the cystoscopy was causal and it's never settled but changed in nature to some extent.
Kind regards,
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.
Re: can someone suggest pain relief
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.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?
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.