Health Organization for Pudendal Education

I am posting again as I have developed even more symptoms which are really getting me down and scaring me so much.

I already mentioned my headaches, blurred vision, feeling faint, tight feelings etc. I now have nerve pains in areas all over my body, they occur randomly and I also have burning/tingling feelings. Is this damage to my central nervous system? I could just about cope with just the clitoral pain, but now I'm in so much pain I can barely move. The only thing which eases it is to drink alcohol, which I'm now doing on a daily basis. I have an appointment with the student health service on friday, but I'm not sure what good it will do. No dr i have seen wants to help me or reffer me, I'm stuck in this situation and can't cope. I am failing at uni and have fallen so far behind.

The pain is usally worse at night now, when I lye down I also experience twitching and spasms in random parts of my body. I never knew that the clitoral pain I have had could cause this. I have had days with no clitoral pain, but I am always feeling dizzy and sick to the point that I feel I am going to pass out. I feel so shaky and I'm worried that I'm going to have a seizure because of all the muscle twitches. This is so, so scary... I don't know what to do anymore!

Candice-marie,

I am so sorry you are suffering like this. I think something else in addition to pudendal neuralgia is going on. You sound very scared, and sometimes fear and anxiety can cause A LOT of physical symptoms. I know you said you've had anxiety before, and this seems different, but maybe this is just worse, but still from anxiety. Citalopram is not going to be a magical cure, but it can help with anxiety over time. I would take it if I were you. But also, I think you need further specialized care than from your student health services or your GP. Keep your appointment and explain all your symptoms and ask for a referral, maybe to a pain specialist or neurologist. Maybe you can bring this to explain that you think PN is contributing to your symptoms. http://www.pudendalhope.org/forum/viewt ... ?f=3&t=953

Also, do you have someone to talk to in person? A counselor, or therapist, or coach? Especially if this is anxiety, but not only in that case, I think it's really important for you to have someone to tell your story to and tell them how scared you are and just listen to you and support you through this and help you find help. Clitoral pain is very frightening because it is such a private part of you that feels broken, but if you can let someone in to your fear and pain it can be very comforting.

You will get through this, and you can help yourself by being a confident and honest patient. Tell people what's going on and ask for help.

I want to reiterate that one reason you could have head / whole body symptoms is because of joint misalignment in your pelvis. The whole time my pelvis was misaligned, I had migraines and vertigo, also neurpathy in my fingers and toes. The pelvis is the kinetic center of your body and will misalign you from head to toe...it did me.

Yes there is a real possibility that you have some kind of central nervous system problem that coincided with your clitoral injury; also the possibility that you are having panic level anxiety and doing a lot of hyperventilation. But, an impact to the clitoral area can also cause a shift in a pubic bone in relation to the pubic symphysis, and that will impact the position of the entire hemipelvis, including the position of the sacroiliac joint.

Assuming you have already been seen by your Medical care team and / or in the E.R. for these frightening symptoms, I would strongly suggest you go to a Physical Therapist who is trained in assessment and treatment of the pelvic joints (Manual Therapy). The PT's most likely to have that kind of training work in Women's Health PT or in Sports PT. You need a manual asssessment as an injury like that would either not show on an x-ray, or would show as a wider than normal symphysis pubis which is not always noted in a radiology report.

I explained before about central nervous system sensitization, but that's really what it sounds like is going on to me. Can you get to a doctor who specializes in pelvic pain or a neurologist? Medicines like Lyrica, Neurontin, Amitriptlyine, Cymbalta can help with this type of phenomenon. I take Ativan occassionally not for anxiety, but PN pain and it does help a little. I only take 0.5mg. That might help you with both issues. The reason alcohol is helping is because it is a CNS despressant and your CNS is hyped up right now. These meds I have mentioned are also CNS depressants so they should help you as well. I hope you can find a doctor soon. Things will get better. It is really bad right now, but it won't always be like this. You just need to get your pain under control.

Faith wrote: Medicines like Lyrica, Neurontin, Amitriptlyine, Cymbalta can help with this type of phenomenon. I take Ativan occassionally not for anxiety, but PN pain and it does help a little. I only take 0.5mg. That might help you with both issues. The reason alcohol is helping is because it is a CNS despressant and your CNS is hyped up right now. These meds I have mentioned are also CNS depressants so they should help you as well.

Faith, I think this was excellent advice, and I agree with you.

Candice-marie, citalopram is better than nothing, but the medications Faith listed might help you even more, and I don't think a GP would be as willing to start them as a specialist.

Thankyou for your replies.

I visited the student health service last friday and basically I am still have problems with getting a refferal or any answers to my problems. I was told that pain in the pelvic region wouldn't cause the other symptoms I describe. However, I know this is not in my head and that my problem and pain is VERY REAL. Since my last post I have developed more symptoms, burning and tinging which has become much more frequent and occurs randomly, especially in my hands, feet, head and chest. This is extremely disturbing and I am losing hope of ever finding the help and treatment I so desperately need.

I was told to leave the area to rest for a couple more weeks, to use an ice pack when pain occurs and to take salt baths. She said there was no visible problem and no swelling, which is a good sign,.. blah, blah, blah!! My other problems are 'anxiety' since all these other symptoms match it and it is obvious that I am stressed and understandable since I relocated from a small town in the countryside to a busy city to study... blah, blah, blahhh!!!!! I can't be bothered with these responses, becuase I know this is not stress related and I do believe I have a problem with my CNS because I researched that and these symptoms match it!!

Anyone else had CNS problems? I have also developed itching, extreme pressure/tight headaches/earache... symptoms of vertigo... numbness and a feeling as if my face has become paralysed... these are all so, so scary and I keep feeling as if i'm going to either faint or have a fit as I also feel extremely shaky, dizzy, off balance and am having very frequent muscle twitches and spasms all over.

Sorry to go on and on, but I am not making any progress whatsoever towards a diagnosis/or any help with this problem.

I was in such a state today I went into town and visited my local NHS walk-in-centre.. waited 2 hours to see the nurse and then be told that they don't deal with these type of problems and that I will need to see someone else... she gave me the address of a local clinic which I intend on visiting tomorrow.. but I am expecing the usual responses I always get. Why am I so unlucky with all of this... I am seriously considering going to A&E tonight and requesting help from a dr and tests to be done, becuase I cannot continue like this, my life is a living hell, and I can't live with it any longer

Candace -

You have had good advice with regard to using ice and taking salt baths, for fast help. Salt baths are very good for easing the burning feeling - there is a separate thread about this, running at the moment. Ice is an old standby and it is easy to discount it because it is so simple, but it is still one of the most effective ways of dealing with PN pain. Many of us rely on it - please do try it for yourself. No more than 10 minutes in each hour, and if you don't have one of those gel packs with a cover, use a pack of frozen peas and wrap it in a teatowel.

However I am very worried about your final comment - 'I cannot continue like this, my life is a living hell, and I can't live with it any longer'

I agree with you, you should seek emergency help. If you go to A&E and tell them how you are feeling, I am sure they will take you seriously. Alternatively you could call NHS Direct - 0845 46 47 48.

Candice, I wonder if it would help to take the fact sheet that's listed in this thread wit you. http://www.pudendalhope.info/forum/view ... ?f=3&t=953

If you think the main problem is the pudendal nerve and the other symptoms are a result of your central nervous system being wound up from the pain of PN -- maybe it would be smart to focus on the PN symptoms with your health care provider so they are not overwhelmed with so many things to try to diagnose at once. If you can localize your symptoms to a specific area where you were injured from the fall and get treatment/pain medication for that, maybe some of the other symptoms will resolve on their own. I don't know, I could be wrong about this but it's a thought.

I agree with Violet. I have found in my journey with CNS sensitization doctors do get overwhelmed with so many symptoms. So focus on the injury site and I think if you can get Neurontin or Amitriptyline or Lyrica or something for the PN pain it will definitely help the wound up CNS. It will take some time though so be patient and hange in there. We are here for you.

faith,

Curious. How much Amitriptyline are you taking?

I ask this because I feel like it is much more effective than the Lyrica. In fact sometimes I feel like if I stopped Lyrica, I'd feel the same.

A's Mommy

PS: I'm only at 10mg Amitrip per night