May I have PN?

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kimberly
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Joined: Sat May 18, 2013 2:20 am

May I have PN?

Post by kimberly »

Hello,
my name is Kimberly,
thank you for accepting me in your forum and sorry for my poor English
I have a long history to share with you.
When I was a child I used to make horseriding since I was 9 years. I used to do it 3 months per year,during the summer until the age of 17.
When I wa 9 years old i started to suffer from recurrent cystitis. The urinoculture were all negative but i took some antibiotic to treat them as i felt a los of pain.I noticed that i had pain during sex intercourse since the first times when I was 17. I have been suffering from Vulvodynia for many years. I used to have cystitis,specially after sexual relationships and I have always felt pain during sexual intercurse,specially in the pelvis and in the vulva. Pain at penetration into the vulvar zone ( vulvodinia) and the sensation of jais. It is terrible. Five years ago I started to have irritable bowel disease and hemorroids.Few time ago I made a test of pudental which said that I have pudental nerve impairment in the fiber for clitoris and vagina.I don't know if this was a sperimental test because in my country there is not the possibility to make specific exams like in other countries.After that I made a treatment for Vulvodinia similar to the electrical nerve stimulation one with a fisiotherapist.I belive i made something similar to FEAS too.During this short treatment ( 2 weeks ) I started feeling syntoms I have never had in all my life: sensation of a foreign object in the rectum , itching, sensation of elettrical shocks in :the legs, arms, pubis,vagina,clitoris and anus, thigs, pelvis and back.Furthermore I have a lot of pain ,pins and needles specially sitting cause of the anus pain while before i just feel unconfortable when i used to wear jeans or during sex intercourse.Do you think the treatment with elettrical stimulation could have damaged or irritate the pudental nerves? I used to make horseriding when i was a children but only in the summer and i neve had accident or something like that. I only do a colonscopy cause of the irritable bowel disease I have.
I don't know what's up with me but after that treatment I have the sensation of elettrica shock almos everywhere in my body . There are days in which I can't sit down,for example 15 days and 20 in which i can do even if I feel pins and needles.Do you think I could have pudental nevralgia? My actual doctor says I have a pudental neuropathy but not a nevralgia.I can stand for a lot of time and during a lot lof days but then it start all again. Do you have syntoms everey day? Every day i feel pins and needles and irritation in the vulva. I also don't have lubrification since I did that treatment whith elettrical stimulation. It was told me I also be a lot of contraction in the pelvic flor.
I also have had problemes with urination since it started the irritable bowel disease so i retain part of the urine. Do you think i have pudental nevralgia ? Could that treatment be the responsible of the syntoms ? People who suffer of PN have syntoms everyday day or they can have perioda like 20 days without no syntoms? Before I made that treatment with electrostimulation i coul sit everywhere for a long time and that treatment last only 14 days.Before to do that treatment i could effort a travel of 24 hours sitting with no pain just 15 days before the treatment. Could it be the beginning of the PN ?
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helenlegs 11
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Re: May I have PN?

Post by helenlegs 11 »

Hello Kimberly, welcome to HOPE.

It could be pudendal symptoms that you are experiencing, although symptoms that are beyond the pelvic and pudendal area will not be. These symptoms otside of the pelvic and pudendal area could be due to an 'over sensitisation' of the central nervous system which could be caused initially by pudendal nerve problems.
From what you have written, it may be a good idea to get the problem with your tight pelvic floor sorted out through some PN aware physiotherapist. I would also suggest some pain management therapies which will hopefully resolve the 'over sensitisation' issues as well as help cope with the pelvic pain too.
What about medication? have you anything in place?

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.
kimberly
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Joined: Sat May 18, 2013 2:20 am

Re: May I have PN?

Post by kimberly »

Hello,
thank you for welcoming me.
I am taking some medicines:rivotril ( Clonazepam ) ( 1 mg )and Venlafaxine 70 mg as i tried Duloxetina during six months when I only had Vulvodinia, irritable bowel sindrome and hemorroids but it provided me no improvement and I had different side effects.After that I took Amitriptilline for irritable colon disease and vulvodinia but i had a lot of urinary retencion,more than as usual so I stopped it after tre months. I also had a lot of costipation with both of medicines.
Right now I am also taking some vitamins of the group B. I will start a phisioterapy focused on trigger points ( stanford approach ) and kegel reverse plus massages that I have to do at home. I also feel a cold sensation in my body unless the pudental zone in which sometimes i have some prurit and a ver hot snsation for no reason.Which medicines are you taking Helen?which are your syntoms?
Take care,
Kim
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helenlegs 11
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Re: May I have PN?

Post by helenlegs 11 »

I take duloxetine, lyrica and tramadol Kim. Lyrica is a newer addition and working quite well .The tramadol does have a constipating problems so that needs monitoring and I have Senna and Movicol to take when I need more tramadol. Getting a balance is needed but sometimes can be difficult. If you suffer from irritable bowel etc ( I don't) obviously a constipation issue needs monitoring.
Sorry you have so many things to deal with. I do hope that the physiotherapy you are having will help, it does sound as if you are on the right track with this :) Maybe ll of the problems are linked to the pelvic floor trigger points and addressing these tight muscles may help enormously. I do hope so.

The combo of a the epileptic drug and anti depressant is for the nerve pain (although nothing works totally well for that) and the tramadol for muscle,tendon etc pain.
All of the heat, cold, zapping, electric , tingling pain will probably be due to a nerve issue. Nerve pain is very different to 'normal' pain so usually easily identified.
It will be interesting to see how the physiotherapy helps, that will give you a better idea about what is going on and therefore how to deal with it.
My issue is fairly simple, I have 4 nerves caught in scar tissue in my piriformis muscle after a fall and a haematoma/lump formed in that muscle. With the help of this knowledgeable forum, Dr Greenslade (Bristol UK) and other internet research the nerves that are affected have all been identified so my diagnosis of sciatic, pudendal, post femoral cutaneous and cluneal nerve entrapmenmt at piriformis level is easily to identify from my symptoms.
Getting someone to recognise this problem can happen has been my problem. I have recently had a nerve conduction test which indicated that my sciatic nerve is entrapped and a spinal scan which showed that my spine was fine, so AT LAST the problem is accepted on a more local level due to my pain management consultant who has been fantastic and so pro-active for me. However this has all come 5 years after my fall, which is a bit late to my thinking.
I need decompression surgery to make any difference as I have tried EVERYTHING else available.
Have you tried any cognitive therapies at all? Something like meditation can help if you are open to it. What about diet? do you eat much gluten? bread, cereal, processed food?
I have never had irritable bowel syndrome but have heard that re-assessing your diet can help and too much gluten can add to the problem. Unfortunately many people advise fibre and bran and other cereals for this problem, this may be precisely the opposite of what you should be eating.
There is SO much to consider and work out isn't there! I hope that you do get somne answers soon.
Take care too
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.
kimberly
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Joined: Sat May 18, 2013 2:20 am

Re: May I have PN?

Post by kimberly »

Hello,
few days ago I went to my doctor and he told me I have a peripheral pudental neuropathy without any exams,just visiting me so I don't know how he can say that.
Some months ago I did a strange test for the Pudenthal nerve that says that warm and cold sensations thereshold are elevated suggestive of c fiber and A delta sensory nerve impairment for clitoris vagina anterior and posterior. My actual doctor said that this test could give faulse results that's why he stopped doing similar not invasive test for the Pudental Nerve.
He also said that Pudental entrapment is very uncommon and he asked me if I had any severe tumble in the past but i forgot to mention him I used to make horseriding during the summer period. I remember i fell down the stairs many years ago when I was a child but I think it couldn't be that fall.I think it didn't hurt me so much and I had a colonscopy around four years ago. I suffer from OCD ( ossessive compulsive disorder ), irritable bowel syndrome ( I usually have diarreah ), hemorroids , Vulvodynia, Levator any syndrome and now my doctor said there is also a suspicious of fibromyalgia but I believe that irritable bowel,hemorroids Vulvodinya and Levator any Sindrome,urinari retection are all syntoms of Pudental Nerve damage and I am afraid of a Pudental Nerve Intraipment. I have the doubt because i don't have any serious test of Pudental nerve.
I started my physiotherapy ( Stanford Approach ) on trigger points last day. I can say I felt pain an than i felt worse for a couple of days.My muscles are very contracted. I have to do 10 massages and continue with the medication. I hope I will feel better with the phisiotherapy.
As I have OCD I took different medication in the past included Lyrica for a very short period because I was fed up of all that medicines that I believe they affect more my irritable bowel.Which dosage of medicines have you taking Helen? I took Tramadol one day but it provided me nausea so I stopped it. Unfortunately I am very intollerant to many drugs.Unfortunately I know Nerve pain is very different to 'normal' pain cause of electric syntoms.It is all so difficult for me that sometimes I feel very depresse.
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Violet M
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Re: May I have PN?

Post by Violet M »

Hi Kimberly,

Unfortunately, there are no tests that are completely accurate for pudendal neuralgia so the symptoms are very important in the diagnosis. Also, it's important to rule out other diseases that might have similar symptoms such as multiple sclerosis. The exam can be important in the diagnosis too so I'm not sure why your doctor didn't do that. It's interesting how each doctor has their own criteria. Are you seeing a PN specialist?

Good luck with the Stanford protocol. I hope it helps you. It's not unusual to have a flare-up after physiotherapy but no fun either. :(

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.
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helenlegs 11
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Re: May I have PN?

Post by helenlegs 11 »

I think with your symptoms Kim, it would be a question of is your pudendal nerve involvement due to the other problems (IBS, vulvodynia, tight pelvic floor, etc) or is the cause of the other problems (IBS, vulvodynia, tight pelvic floor, etc) due to a pudendal nerve involvement. For treatment of the problems, it doesn't really make a massive difference as the physiotherapy the you have in place already would be the same treatment regardless of why the problems exit and what is the cause.
A guided pudendal nerve block may be the next diagnostic and hopefully therapeutic step. Has your Dr mentioned this at all?
It's worthwhile mentioning that pudendal neuralgia could possibly happen after a build up of 'tumbles', falls or horse riding. Cyclist for instance can have PN although thankfully physiotherapy can usually help enormously with this 'build up' of symptoms due to this activity. Hopefully you will find the same :)
I know the heat and cold test you mention. I know it would work with me, and quite well I think as I am very numb, especially on the right hand side. No one has suggested this test over here unfortunately, I think I would have been positively diagnosed years ago if it had been offered. Some people who have more motor function pudendal nerve involvement would not be able to be diagnosed with this type of test so I can see why your Dr did say this could give false results (but only sometimes, I have to add).
I take tramadol as and when but can go to 8 tablets per day, which I hardly ever do. Mainly because they have a constipating effect. I take Movicol and senna (sorry repeating myself here) if I have 'over indulged' but getting a balance is tricky so I often put up with some pain rather than take the tramadol to my prescribed doses. I really can't be bother with the complexities of 4 tramadol equals 2 Movicol plus perhaps 1/2 senna tablet(s) I maybe being silly with this attitude but I can't bare being pain and medication focused in a major way. That would just get me down more than the pain I think, especially as it is always there anyway, in one form or another.
Have they suggested any pain management for you at all? I think it would definitely be of benefit because of your extensive (separate or connected ??) problems. It may be that one pain problem say a soft tissue injury from a fall (horse riding or other ?) for instance has heightened your central nervous systems response to pain signals. This 'Central Sensitisation' (CS) can happen so easily and still exist well after any soft tissue injury has naturally healed unfortunately. CS can be treated with good pain management like cognitive therapies, mindfulness and acceptance; meditation and relaxation can help enormously too. Even if a pathology remains (sometimes long after any soft tissue injury should have naturally healed) pain management is very helpful so it would be a good thing to try whatever the real cause of your own problem is.

I am not the best person to tell you about medications, but there are others here who may be able to help more as their knowledge is far superior to mine. There are muscle relaxants for instance and I have heard of vaginal suppositories for instance that have helped some. Because you definitely do have pelvic floor dysfunction maybe you would benefit?? I know some people use medicinal, topical creams which you may be able to tolerate better than an oral prescription? Hopefully others will chip in here to advise although you can always look for particular subjects in Search above too.
It may be worth tryin another type of antidepressant if the duloxetine didn't help. That's all you can do tbh, try something and see if it is worthwhile taking as sometimes the side effects are not worth it as you have found :( . I'm not a massive fan of medication in general but if something can take the edge of at least, it is worthwhile.
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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Violet M
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Re: May I have PN?

Post by Violet M »

I had a very abnormal response on the heat/cold threshold test too. Kimberly, I'm wondering why your doctor disregards it. Maybe people without PNE have an abnormal response too. That would be an interesting research study.

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.
kimberly
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Joined: Sat May 18, 2013 2:20 am

Re: May I have PN?

Post by kimberly »

Hello,
@Violet:
my doctor told me that he used to do heat/cold thereshold test but he realized that people without PN or PNE had an abnormal response too, so that he decided not to do this test anymore. He is a PNE specialized doctor here in my country He is specialized in urology and neurology and he is an eminence in the pelvic floor. Next time I will ask him why he doesn't do nerve blocks and what he thinks about it. Today I have forgotten to ask about that. I told him about horseriding when I was a child, cystitis, sex intercourse pain since the first relationships and post sex cystitis and about the Pudental Nerve. I am 31 and my distasse started when I was 9.
Today I have done my phisioterapy and It was not nice but at the end I felt less pain during the massage.I hope it will be useful for me.I didn't have electrical sensations in theese days but I still have pain in the coccix but I am always afraid they will star again. My Dr suggested me to use electrical hot water bottle and i am using it.I have benefits with it specially when I have pain and electrical shocks.
One gynecologyst suggested me to use Valium in vagina ,the ones we take by mouth. I know there are valium suppositorys in US but they are not sold where I live.
The medicines that usually my doctor use give to his patients are:Venlafaxine, Duloxetine, Pregablin,Pregabantin,amtriptilline, expose ,Lyseen, Muscoril, Rivotril that are not prescribed all together,for sure ,but I know he manages with this medicines as I heard from her patients in internet.
@Helen I took Duloxetine years ago for 6 or 7 months for OCD so that I have been taking Venlafaxine now. I hope it will work. I started my farmacologycal therapy aprox 2 months ago with this doctor and now I am taking Rivotril and Venlafaxine.My Dr suggested me Hata Yoga.I did cognitive behavioral therapy time ago but now I stopped because I have to spend a lot of money with means of trasporta to go to the doctor specialized in PNE, in my psichiatric and with the last treatment I did for Vulvodinia,something like FEAS that made me very bad.I belived it contracted me so much and I have many doubts about that treatment because after that I started to have theese Electrical sensation in all my body and having problems to be sit, but I reall don't know.It could be a coincidence but the rectum sintoms started in that short period of SEAF antalgic electrostimulation.Have you been thinking to be operated Helen?
Take care of you both,
Kim
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kmerritt
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Re: May I have PN?

Post by kmerritt »

What is the heat/cold threshold test?
Burning pain started 11yrs ago mildly. Continuous since 1/13.
MRI hip mild labral hip tear. Multiple dr appts. PT with pelvic therapist. Diagnosed w/ PN by Dr. Nel Gerig. 2 nerve blocks for diagnosis followed by PRFA by Dr. Wright at Denver Pain Mgmt. Need repeat. Dr. Hibner 11/13. Meds: Gabapentin, Valium/Baclofen vag supp, Lorazepam, Nortiptyline, Miralax, Magnesium, stool softeners. Believe PN cause was from very traumatic child birth, fall/fx coccyx, fall on Lt ischael tuberosity.
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