Newbie

[rea]

I just talked to Hibner's office. They do a special MRI so mine have been a waste if I go to see him. I called Houston again and was told they would give "Wendy" a message to call. Still no word. Does anyone have any idea how long it takes for them to schedule an appointment? I feel I'm making a blunder by calling them so much...
Just like Newbie, I'm on a road I never knew existed. EVERYONE should be aware of this and the other conditons (IC, VV). Maybe I'm in the anger stage.

[helenlegs 11]

Just like Newbie, I'm on a road I never knew existed. EVERYONE should be aware of this and the other conditons (IC, VV). Maybe I'm in the anger stage.

Anger stage seems to be on repeat for me You are so right rea EVERYONE should be aware of this
So just to help things along all of the newbies and 'oldies' NEED to sign the petition. So does everyone you know, anyone who has a few e addresses, use them all!

http://www.ipetitions.com/petition/requ ... g-for-all/
ABSOLUTELY NO NEED TO DONATE AT THE END.

We have been stuck at the just over 400 for some while now, so need more signatures. . . . . . . . .please. I may be annoying but I am polite with it.

[rea]

Joyh,

I'm sorry for using your post to try to get some answers. Like you I'm new. I have found out that this is a waiting game in trying to get answers and help. I just found out today that neuro has not even sent in my referral for pain management to Lexington (4 hrs. away) to hopefully get a nerve block. I'm running out of sick days..I hope you have better luck then I do in getting help.

[akotars]

Hey,

I'm new and I have problems for 2 years now. I dont know what to say except that I'm very tired, scared and depressed. Unfortunaly for me I live in country where most of the doctors have never heard about PN/PNE or pudendal nerve. Those who have heard dont know how to treat it or where to sent me, better to say they don't know much about this illnes.
Only thing that I know that the left rectal branch of pudendal nerve is damaged and that I'm in lot of pian (geting worse and worse). When I had an EMG I didn't felt my left side at all. When dcotor had stabed a needle in me I felt like mosquito bite me. I have read so much about this illnes that I realy don't know what to do or where to go.
I have contacted several doctors in Europe and I dont know what to say about it. Now I'm thinking to travel to Turkey to prof Erdogru because he was the only one who wrote me more than 2 sentances and is constantly answering my questions. I'm also thing about going in Munchen in hernia center to see do I have inguinal/femoral hernia which can also be the cause of pudendal nerve damage and my pain.
Please give me some advice what to do?

[helenlegs 11]

Hi akotars,
Welcome to Hope.
If there were any definitive helpful answers for you I would try and give them. Unfortunately our PN problem doesn't work as easily as that.
From what you say in your post you have a lack of feeling and numbness in your pudendal 'saddle' area. I have this as well. Plus you have the pain of course. I did wonder if you have tried physio therapy or any of the conservative treatments available. It may be difficult for you to find a pelvic and PN aware physiotherapist but there is a list on the home pages to look through.
It would be great if you could establish whether your PN problem was say muscle tightness that could be helped with conservative treatments like PT.
There seems to be an accepted medical argument that if the problem was caused by some trauma like a surgical procedure, fall, weight training the problem is more likely to be entrapment which may require surgery. This can only be established further if all conservative treatment options have been exhausted with no improvement, including pudendal nerve blocks.
You didn't mention any of these procedures, I suspect they have not been available to you because of your location? It is such a difficult decision to make with all of the costs involved. Does Dr Tibet do any nerve blocks before the surgery to check for an actual pudendal diagnosis?
I know they do in France (Nantes) and would not do the surgery if the tests before hand were not conclusive.
Take care,
Helen

[akotars]

Hi Helen,
I tried to exercise, swiming, Kegel exercises but the pain is worse. Sitting is a big problem it seems tht it tricks my pain the same is with bowel movements. I was reading the prof Tibet Erdogru site where he describes the symptoms and I have all of them. Local anestetic was working for some time but no more. Painkillers don't work at all. Croatia is like in an other plant when pudendal nerve is in question.

[helenlegs 11]

Honestly akotars, I wouldn't feel so isolated with good treatment for this problem, it is universal. Thank goodness for those few wonderful doctors who have taken up the challenge to give us some help.
How did your problem start?
Kegals are definitely not recommended and best not to do frog kicks when swimming.
Please keep us up to date with what you do decide to do. I did e mail the Nantes team and did get a lovely reply. I was supposed to get some more info but have heard nothing in over 2 weeks now. It is good that you have been able to keep contact with Dr Tibet.
take care
Helen

[janetm2]

Welcome Akotars,
painkillers are not always the most effective medicines for this condition. Please see the FAs off the home page for information on nerve medicines ( the anit-depressants are what we use but some require some time to build up before relieving some pain). Also the FAQs have other useful tips on what to do and steps to take to get treatment. Good luck
Janet

[akotars]

hi Jenet

On FAQs I can only see tips about using this forum. Could post some link? Sorry if understud it wrong.

Best regards
Anita

[akotars]

Hi Helen,

Well it all started 2 years ago when my PAP test have showed infection with gardnerella vaginalis, ureaplasma urealyticum and HPV CIN I. My gin gave me the very strong drugs (medazol vag and tablets, diflucan tablets and Efudix cream for cervix). After the first therapy I started to feel burning senzations in the entrance of my vagina. He put me back on the same therapy which made feel very sick but after I have finished it burning sensation came back and that went on and on for cca. 4 months. Then I have decided to change the doctor but in the meantime I had to seek help in ER. The urologist in ER did the urin test which have showed ureaplasma urealyticum and e. coli and gave me the drugs but I started to choke from them and he gave me the new once (the burning disappeared) also on my one I have taken the Acidosalus vag. For two months I was feeling ok and then I took Acidosalus vag again (I don't know why) and the burnig came back. All the time I was thinking that this is because of HPV infection so I had biopsy, chryotherapy of vulva (bay the way vulva never had condiloma) vagina and cervix, podophyllin application. In meantime on my vulva some strange wons appeared and doctors had now clue what they are and why so the gave me difrent creams but thay wouldn't heal. So one afternoon around 6 PM I went on the beach to sunbathe naked. Few hours later my skin on vulva, pubic bone, all inguinal region was burning and from that they new simptoms are emerging almost every day. My vulva strted to swell and hurt, skin was changing colors like my blood is staying in my pelvis, vulva and vagina, my limph nodes were swellen, some strange erosions poped out inside my vulva. I was feeling like I'm burnig alive. I started to feel presure in my groins. It hurted me to urinate or havin bowel movements. I couldn't walk, sit, anything. I saw many doctors here and they gave me different diagnosis which at the end were false (diagnostic test showed) but that didn't stop them to give me more drugs for something that I don't have. All tests that were done showed that I have some kind of inflammation proces going on in my body, that my body is struggling against something (that wath doctors told me) and that I shouldn't worry cause it is small inflammation.
When finaly after 18 months I have manage to convince one gin to do vulvoscopy thay saw that all of my vulva (inside and outsied) is full of acido-white epithelium and he did the biopsy which have showed changes of the epithelium do tu some kind of inflammation of unknown cause and suspicion of lichen simplex chronicus. The diagnosis at the end was vulvodynia but in my country there isn't doctor who knows how to treat it. So I went to another gin who knows something about it and is willing to help me. She gave me Seroxat tablets for raising a level of seratonine in my body and the steroid cream ( from earlier expiriance I have learned that application of any kind of products with greasiness will only worsen my symptoms) which I told here will make me feel worse but she didn't leasten. After having a very bad experience with steroid cream she decided not to use it. I was taking Seroxat and going to psychoanalysis and on my one I started to use local anestetic in gel Dolocain. With Dolocain I have manage to reduce the level of burning in outside area for few months and I was feeling better. In the meantime I had EMG with showed chronical lesion of left rectale branch of pudendal nerve. Several months I was trying to find neurologist who would look at thes findings cause my gin and neurologist that have send me to EMG didn't want to see it. At the end I have find over the internet what is that. At the beging of August this years an new symptoms pop up. It started to feel burnig and stabing pain while I urinate and having bowel movements. Then I started to feel stabing pain in my hip, groins even when I don't move. Also sometimes I feel like my groins will explode. My lower back hurts.