Health Organization for Pudendal Education

Hello I'm new, and I have many questions and I need advice My pain started last year while making out with my boyfriend. I was still in my underwear, and he was on top and when he pressed his penis I felt an incredible amount of pain but since I didn't know any better (I've never had sex) I thought it was normal to feel that much pain. I told him it was painful so we switched and long story short, since I wasn't ready for sex and hurt a lot we didn't have sex. And since that day I haven't had a minute without that incredible pain.
I went to many maaaany gynecologists, none of them was helpful. Then I diagnosed myself as having localized vulvodynia, and went to see a doctor who knew about this condition. He gave me Lyrica and an antidepressant and I have been using them since last August. But they didn't help with my pain so I had Vestibulectomy. And though I believe it did help with the pain inside my vagina, I still have pain. So my doctor wanted an MRN and luckily it is clear that I have Pudendal Neuralgia. The report says that my left pudendal nerve is much thick and intense than the right one (I'm not sure if it means Entrapment?)
I don't know what else to do, I think they'll try blocks and steroids. I'm 23 and basically have no life because I can't leave my bed. I can't keep balming myself and my ex boyfriend for ruining my life. Can dry humping(sorry for the term) cause such problem?
I don't ride bike, horse, or haven't had a trauma. No falls or accidents. No cause I can identify. My doctor believes that Pudendal Neuralgia caused Vestibulitis as well. But I think I'll lose my mind over this because the amount of pain is incredible and nothing can help. Did I cause this? Because some doctors told me that since I'm thin my boyfriend caused this.
Please excuse my English, it's not my main language:)

Welcome to the forum.

In answer to your question about sexual activity causing pain, lots of people have vigorous sex without having pain so knowing that, maybe you can realize there is no need to blame yourself and then you can focus on getting well. How long ago did this happen to you?

An MRN cannot accurately diagnose pudendal neuralgia. Pudendal neuralgia is pain in the distribution of the pudendal nerve and you can have it with or without entrapment. An MRN might be able to show a nerve entrapment in some cases but it's not 100% accurate for a diagnosis of pudendal nerve entrapment (PNE). If your pain is primarily on the left side (the side that shows the thickening) then maybe it is significant. Did the physicians who read the MRN have any opinion on whether you have an entrapment?

Are there any physical therapists in your country who specialize in treating patients with pelvic pain or pudendal neuralgia? Often with pudendal neuralgia the nerve is tender along the course of the nerve when pressed on via the vagina and typically you will have tense/tight pelvic floor muscles. If you can't find a chronic pelvic pain PT maybe you could at least be evaluated by a manual therapist for any biomechanical/musculoskeletal problems.

It is really an individual decision whether to go ahead with procedures like nerve blocks or whether to try less invasive things like lifestyle changes or the mindbody approach as described by Ezer on this forum. (His username has recently changed to nonsequitur if you want to search his posts) Sometimes you just have to follow your instincts on whether you are most likely to have some sort of mechanical problem like nerve entrapment where the pain was triggered by sexual activity or whether it is more anxiety/stress related.

Violet

Thank you for your reply.

My MRN report and 3 doctors who read the report told me that I have some serious Pudendal problems. They said that they haven't seen anyone as young as me who has PN. They didn't tell me whether I have entrapment or not. My report just says that it's obvious that my left pudendal nerve is thicker and problematic that the right one. I think the more I have pain the more I tend to blame myself so maybe that's why none of the treatments so far gave me any relief at all. For now my previous doctor advised me to have the injections and that I am probably anatomically predisposed for this.

By the way there wasn't anything rough or vigorous but I got very stressed because we were having issues, and one doctor said that stress can lead to PN.

It's been exactly 13 months and Lyrica and antidepressants does me no good.

senoz1, just to clarify, did you have issues with your boyfriend before pain started? Also is pre-marital sex frowned upon in your culture or did you feel pressured into it?

You may want to read this thread starting here:
http://www.pudendalhope.info/forum/view ... &start=540

The MRN shows that your pudendal nerve is thicker on one side probably. It means it is irritated and inflamed (according to Dr. Weiss in San Francisco) --which I am sure it is in your case with all the pain and muscles spasming. It is no proof of entrapment.

Thank you very much for your reply.
Yes we had issues, and I couldn't trust him and it is true that I didn't feel ready so I think I strained my whole body pretty hard though I have no memory of it. But can stress and sadness really cause this?
I don't know if I can be cured because I don't remember a day without feeling this bad. They say steroid can help with the inflammation but I'm a pessimist so I don't know what to think?
Do you think the initial pain was psychosomatic and then became chronic? But I went to see a doctor 2 days after the pain started and she said that I had rashes at the opening of vagina and that is the symptom for vulvar vestibulitis syndrome.

It is not your fault.... cant stress that enough.... The condition can be caused by so many different things it is maddening.... The cause is a question we all struggle to discover.... When we do experience it there is one thing to know... The Difference between the Cause and what Triggers the start of the pain can be vastly different and unconnected...... The cause often builds up for years and years before something finally Triggers the start of the pain.... One bad fall can trigger it.... Riding a bike can trigger it.... A million things can trigger it... So dont blame yourself for the onset.... Mine was caused by probably 20 years of my last vertebra in the spine fusing wrong into the sacrum... That made the muscles in the pelvis slowly to grow wrong thanks to a imbalance in the way body weight was transfered through the pelvis.... What triggered it was working out my senior year in college i think....
To begin with... as someone who went through so freakin much... You probably want to know for sure if it is the pudendal nerve.... So we got a left pudendal nerve and a right.... They can both be triggered or just one.... Or one and then the other like in me...... We struggle alot as sufferers to be treated right by the doctors.... The major begining test is to get a pudendal nerve block.... Finding a doctor to do this test is one of the first tasks.... Can u definetly say that it is on just the left side or the right side?? Lota time it starts on one side or the other....
Getting a good block of the pudendal nerve will numb one half or the other.... a complete block done right will numb all feeling and block the pain for several hours... This is one of the first diagnostics that us sufferers usually get.... A pudendal nerve motor latency test is another of the first diagnostic tests we end up getting....
These two test are something that is needed to kinda the recognition that is needed to get adaquite recognition from doctors... Its pretty hard to get pain medecine from doctors nowadays.... Another thing.... Entrapment is a key word... This basicly means reduced space for the nerve.... The nerve getting pinched or choked off for one reason or another.... After the condition is triggered any constipation at all can cause alot of extra pain.... In many of us that is....
Now what u said about stress.... Well the pelvic muscles and tissues can be a bitch.... Is so many the pain creates a vicious circle.... Pain makes us tense up... Tensing up makes the muscles and tissues entrap the nerve more... causing more pain... causing more tension.... U see what i mean... Now dont know your case specifically but i am throwing out common facts for many of us.... Anxiety can make the pain multiple/// Breaking this cycle is one of our biggest fights..... I know for me that anti anxiety medecation helps a whole lot.... klonapin or clonazepam really helps me.... If the muscles are a contributing factor in your case then stopping the circle of pain.... I know in me just being unhappy causes my entrapment to increase so much.... any constipation multiples the pain by ten fold.... Trying to relax and break the circle is a real fight....
just giving some ideas here.... i wish i had known this stuff in my first two years//// I would say good luck but that sounds contrite given that it feels like the worst luck in the world to get this pain.... I'll say god have mercy on you please oh please instead.... And what the doctor said about not knowing about someone as young as u having this.... It happened when i was 24... and was building slowly over 20 years before.... So age has no meaning....

I feel for you, I truly do. As I do everybody who suffers from this horrific condition. I hope you can find the cause & recieve successful treatment. Good luck.

Do you think the initial pain was psychosomatic and then became chronic?

Somatoform pain disorders are real. The pain is real and not imagined. The body and the brain are involved. You experience muscles spasming. Discoloration of skin etc.

But I went to see a doctor 2 days after the pain started and she said that I had rashes at the opening of vagina and that is the symptom for vulvar vestibulitis syndrome.

I have been diagnosed with so many pathologies: Prostatitis, PN, PNE, piriformis syndrome etc. It is not very meaningful. The common denominator is PAIN.

Ultimately it is for you to decide your course of action. But please read John Sarno MD ("The mindbody prescription" is a good introduction) to get an idea of what somatoform pain disorders are and what you can do about it. At least 3 of us on this forum have recovered with that methodology.

Yup.... the mind has a crazy interaction with the physical disease.... For me and so many the mind interacts and controls muscles and whatnot like you can not fathom at this point.... When the mind sufferers it can actually make the physical entrapment worse... This absolutly true in me.... The more i stress the more the entrapment strangles the nerve.... Hurting makes us clinch and clinching just multiplies the entrapment in so many of us.... Your condition might or might not be like this but in many with this condition this is true.... The condition can do so many things that most doctors dont understand...... My PNE is a very rare kind of PNE... which has made the whole experience a thousand times more confusing.... And every doctor i saw in my first years had no knowledge to enlighten me to what was going on.... We gatta figure things out ourselves.... Which makes all of this so fucking hard.... But being told that we are not crazy and that our individual case is something we have to try to discover the cause of for ourselves is important... piecing together the pieces is a fight we all have to fight.... wish i had had this knowledge in my first years....

Everyone thank you so much for your replies, it means so much to me since I have no one to talk to.

Are nerve blocks and steroids the same thing? Can they help cure this condition? My doctor didn't mention anything about entrapment and my report just mentions left one bein much thicker and intense than the right one. And the pain started on the left nerve and kept like that.

It's so hard living with a chronic pain, and I honestly don't know how to relax and try to be happy. I use Lyrica 300 mg and an antidepressant 40 mg since August 2015 but they don't even decrease the pain. Vestibulectomy was very hard too, and after having it my doctor told me that I should get an MR neurography before a revision of vestibulectomy. And apparently I have problems with my pudendal nerves as well. It's so hard not being able to leave the bed, everyone at my age are out having fun and for the last 13 months I don't know how many times I was able to leave the house.

I really hope all of us will get better, this condition is hell and uncertainty about getting better kills me.