Health Organization for Pudendal Education

After recently falling and hurting my clitoral area I have developed new symptoms... further body nerve pains in my legs, arms, hands, feet, back, shoulders and head. After a day these seemed to ease off, however since then they have returned and become increasinly worse by the day. I cannot sit or lye down in one place for long or i am in agony

The scariest thing is that I have extremely bad headaches and my vision has become very blurred and I am having difficulty focusing. I also feel sick and dizzy, as if my head is swaying from side to side, feel as if there is soemthing swishign around inside my head, as if there is a tight band around it and it is about to explode. I also am sensitive to any light, so have been sitting in the dark for a few days.. however, this has not improved these symptoms. Walking around I feel off balance and also feel as if I am not even in reality and nothing seems real. Doctors have told me it must be due to anxiety, however it started just after I injured my cliotal region.

I don't quite understand how pudendal damage could cause this, but it has done and it is the scariest thing I have ever experienced. I feel as if i'm going to pass out and cannot stand or go out...

Does anyone else suffer from or has suffered from this and what can I do to ease it before I find the help I need.

I had migraines including optical migraines and vertigo dating from the same time I started with pelvic pain syndrome. This is because my pelvic pain syndrome was secondary to pelvic joint dysfunction, and the kinetic compensation for pelvic joint dysfunction is usually in the neck. The answer is to see a PT Manual Therapist qualified to look for joint dysfunction in the pelvis: decline care from any PT or Chiropractor who notices a twisted neck and wants to treat that directly. You can adjust the neck over and over and it will not resolve if the system is driven by a pelvic misalignment...you can also get injured trying.
The pelvis - neck connection is that if your pelvis is askew in one direction, your body would naturally want to face a little sideways or tilt, and walk in a diagonal line; however we have powerful reflexes to keep our head level and to walk straight in the way we are facing. So, the body compensates by twisting in the opposite direction further up, most often high in the neck near the base of the skull.

candice-marie88 wrote:After recently falling and hurting my clitoral area I have developed new symptoms... further body nerve pains in my legs, arms, hands, feet, back, shoulders and head. After a day these seemed to ease off, however since then they have returned and become increasinly worse by the day. I cannot sit or lye down in one place for long or i am in agony

The scariest thing is that I have extremely bad headaches and my vision has become very blurred and I am having difficulty focusing. I also feel sick and dizzy, as if my head is swaying from side to side, feel as if there is soemthing swishign around inside my head, as if there is a tight band around it and it is about to explode. I also am sensitive to any light, so have been sitting in the dark for a few days.. however, this has not improved these symptoms. Walking around I feel off balance and also feel as if I am not even in reality and nothing seems real. Doctors have told me it must be due to anxiety, however it started just after I injured my cliotal region.

I don't quite understand how pudendal damage could cause this, but it has done and it is the scariest thing I have ever experienced. I feel as if i'm going to pass out and cannot stand or go out...

Does anyone else suffer from or has suffered from this and what can I do to ease it before I find the help I need.

I suffer with dizziness and blurred vision a lot!! Also suffer with nausea, the best thing i found for that is preggie pops. They are lollipops found in babies'r'us and they help my nausea go away. I don't know , i was told by a couple doctors that the dizziness and the nausea is related to the pain. That's all i can really say. But i do experience that too. I find myself rocking and swaying back and forth sometimes too. good luck and if i find out more i will let you know.

It's possible you could have something called central nervous system sensitization going on. This is where basically the nervous system becomes hypersensitive to pain. This is what is believed to occur in conditions like Fibromyalgia (not saying you having fibromyalgia, just giving an example). An injury/trama can often be the onset for this phenomenon to occur. Why is happens in some people and not everyone who gets PN I believe (from my research and understanding) is that some people are predisposed to central sensitization occuring. It is not caused by anxiety. Your pain is real even if doctors do not understand it.

I have central sensitization from my PN. It didn't happen immediately like yours (mine occured within 3 months of when I couldn't sit due most likely to PT trauma). But I experience fatigue, all over muscle pains/tightness, and at my worst headaches, light sensitivity, and dizziness. Are you taking any medications that work on the Central Nervous System like Neurontin, Lryica, Cymbalta, or Elavil to name a few? I found that once I got up to a high enough Neurontin dosage (2400 mg for me) my all over muscle pains and headaches got better. But in the last couple weeks they have returned after dealing with a cold and starting birth control so I'm not sure what is going on. When my head hurts I mean my head hurts. There is no medication that will take it away (even narcotics, like Lortab) which shows me this is most likely coming from the central nervous system. Maybe I need to up my Neurontin or start another medication (Cymbalta is next in line for me). Or maybe I just need to stop birth control (I was put on that to try and minimize my PN pain flares that occur with my cycle changes).

As for non-medicine things to do to help it. I don't really know other than sometimes I apply ice to my head/neck/shoulders or heat. Drinking a lot of water and trying to sleep more are other things to try to do.

Hopefully they will get you on the right meds and get this under control for you. What kind of doctors have you seen?

Thankyou for your replies

I am not on any meds for my pain at the moment as it has only recently stararted again. I suffered from PN symptoms on/off for 3 1/2 years and between summer 2010 and Feb 2011 I was virtually pain-free and my nerves seemed to be healing well, I was a lot happier and I finally started university. However, I had a fall last week and hit my clitoral area, causing terrible pain to the region and sharp nerve sensations in other areas of my body.

My head is badly affected and seems to be getting worse, I am experiencing a very starnge heavy and tingly sensation all over my head and neck and it seems extremely tight.

I have visited my GP but she said it is most likely stress/anxiety since I suffer from both and have been on medication to help with panic disorder (this was around christmas time) so because of my medical history it seems doctors think my pain is pyschological.

I really do need a referal because I have taken so many steps backwards...

in the past I had no success and I waited a long, long, long time for my nerves to start healing and the pain to subside and now I feel like it was all a huge waste because the pain I'm suffering from now is worse than ever and I am now falling behind with my studies.

I am so sorry to hear that things are difficult for you at the moment. If you suffer with stress and anxiety it can certainly make it more difficult to deal with pain - let alone the fact that pain can cause stress and anxiety so you end up going round in circles.

I am wondering, have you been offered CBT at all? I have found it very helpful with pain management, for me it was the single thing that pulled it all together. If you are interested in this, maybe you could ask your GP - I was referred to a psychologist through my GP and was able to see her at the GP surgery, which was really convenient and she really helped me a lot. It didn't cost anything, of course.

Also I am wondering about something else, you mention waiting for your nerves to heal - I was advised to wait, as well. I've waited now for 20 months and it is still exactly how it was when it first started, however I am managing much better in myself, for a start I am not frightened of it any more.... Where you advised how long the healing was likely to take?

By the way I really would recommend that you try to get some medication to help with the pain, it is not good for either you or the nerve to be in pain for a long time.

I hope that things improve for you soon!

Hi,

Your symtoms sound very much like MAV (migraine associated vertigo) which is a form of balance disorder. I know this because I have had a balance disorder for the last 3 years and know how scared you feel. This can be diagnosed by a neuro - otologist who specialises in disorders of the inner ear. MAV is treated with lifestyle changes, medication and Vestibular rehabilitation therapy.

Hi,

I am writing again because I am feeling worse and worse and am so scared at the moment.

My clitoral pain seems to have calmed down and I can handle to pain more now, not sure how long this will last. But the main problem I am experiencing at the moment are the feelings I have now developed in my head, neck and ears. These have become worse again and I now feel as if I am going to pass out which occurs many times during the day. I feel an extreme tight feeling in my head, accompinied by tingling, numbness in my head and face, tightness and ringing in my ears, a feeling as if i'm being strangled which is causing me to feel breathless and panic. I do suffer from panic attacks as mentioned in my previous posts, however, this is definately not anxiety because it only occured after the clitoral pain began and I have suffered from anxiety for a number of years, so I am well aware of the symptoms brought on by that, and this is not it.

I am so scared, sometimes I feel okay, but then my headaches begin and I feel as if I am somehow detached from my body, as if I'm floating and not with it, causing me to become extremely faint. I feel off balance and extremely dizzy when this happenes and my vision become very blurred. I also expereince sensitivity to the light, so I am not able to be exposed to brightlights and I have avoided going outside because the daylight is making me feel worse and bringing these headaches on. I haven't had any bad pain like you would expect with a headache, but just tight feelings and tensions, like my muscles keep locking up my my neck and head.

I feel as if this is going to kill me, do you think this could be caused by limited bloody supply to my head? I really don't know how this has happened, but i was researching orgasm and dizziness and read that orgasm can cause dizziness, blurred vision etc due to lack of blood supply to the head. I now think that because my PF muscles are so tense, maybe there is increased blood flow to that area and less to my head? this is scaring me so much!!!

I have been to my GP twice about my symptoms, but am told that it is stress and due to my anxiety which I have suffered from for quite a while. I was prescribed citalopram, an anti-depressant... but i don't see the point in taking it because I know it will not help and that my pelvic floor must be affecting my head. Do you think this is dangerous? I don't feel like a real person anymore and can't handle this. I was depressed due to the pain, but i'd rather have that alone than this also. I really feel suicidal now because I can't continue to live like this, I don't feel at all with it and my head feels so heavy and uncomfortable. I find that it occurs at random times and not neccessarily when I have clitoral pain or discomfort in my vagina.

PLEASE HELP ME !!! what can I do to make them realise that it is down to my PN/PFD i have told them about the fall I had and the pain I have been in but am told it's most likely caused a yeast infection and because of my stress/anxiety this can cause unexplained pain... because I have had an examination of the area and apparently it is fine!!!! but i know that it is not fine and that they are just so un-educated in this condition, how do I make them understand me because I cannot live another day feeling like this.

One more thing, I have never been diagnosed with PFD/PN... I just assume I have one of both of them because my symptoms are identicle. I have seen numerous doctors in the past who came to the conclusion that I was suffering from yeast infections and I was therefore never refered. In th end I lost hope, because it seemed no GP would take my problem seriously and I decided to take the long road to recovery... hoping I would get better naturally and in a long, long, long time... which it gradualy did... I still had discomfort now and again, but i was able to live a happier life and pass my exams etc. But obviously now Im back in pain and I need to find help, because I cant wait another three years hoping and praying to get better. I have never been offered CBT for my pain since they didn't believe my suffering was real.. and this is just a repeat of last time, since I still can't find a doctor who will listen. I haven't mentioned PN to them, becuse I know they won't like it... so what do i do?? This website has been my only hope and the only reason to why I gained knowledge of my condition... I just wish it was simple, but it turns out it's not. I'm living in the UK btw.

Sorry for going on, I am just desperate for help and relief!!!!!!!

I really think you need medical care and need to continue to seek professional help, from new practitioners as your regular Docs seem so flip about it.
I want you to understand this so that you don't think I am telling you it is safe to just deal with it at home and not get help. But with that said i will give you a couple of techniques to control vertigo if that is what is going on, as Kath suggested. I have had episodes of vertigo too as part of my migraine syndrome. I have had 2 acute episodes in my lifetime, which were so bad I was lying on the floor vomitting. But I also had a milder form of chronic vertigo similar to what you are describing, for a 3 or 4 month period after the childbirth that I associate with the onset of my PNE.
Assuming it is vertigo, and it is REALLY better to seek competent medical care than to assume, there are some strategies which will calm it down. Vertigo is secondary to a disruption of the fluid balance in the inner ear. Things that reduce vertigo include antihistamine pills, a low sodium diet, and propping up the bed or mattress so that you are sleeping at an inclined angle with your head higher than your body.
If you see no improvement with these strategies, all the more reason to get a 2nd opinion about your symptoms.

Candice, can you get your physician to make a referral to a physical therapist who can evaluate you for tight pelvic floor muscles since you think that might be a problem?

Also, until you can get into a PT for evaluation of the pelvic floor and head and neck muscles, maybe a massage therapist could help to loosen up the neck and shoulder muscles. They are often very well trained in all of the different muscles in that area and should be able to tell you if they are tense.