DR GLAZIER

Hello Ladies,

I have been seeing Dr Glazier I do the Biofeedback for dysesthetic vulvodynia. He advised not to use anything on the vulva skin other than olive oil. When I first started with this 4 years ago I was using allsorts of cream from the GP for yeast the skin was sore and the vulva was swollen. Now I do not use anything when I get the burning its not the skin but the nerves it so hard after all this time to get use to the fact its the nerves as you always want to put something on the skin when its burning or itching.

Again I feel you have to use allsorts of treatments at the same time. So I use Biofeedback, Hypnotherapy, Reiki and medication not one thing on its own works, diet and meditation and prayers. Just thought I would write what I do as if one thing isnt working try several others at the same time.

And you know what Ladies we will beat this one way or another as we have each other and all information is helpful.

I live in the UK no one really rates the Biofeedback here when I mentioned it at my vulva clinic but hey I still use it and work with myself on what I feel I should do. Remember we are the experts on this not the Consultants because we live with it everyday.

United we will crack this between us lovely ladies

Keep Smiling

Ria

Hey Ria,

I really appreciate your post. I can relate to so many of the things you have mentioned.

I too am throwing several things at Vulvodynia. Dilators, Amitriptyline, Diet changes, etc etc etc

Its also very difficult for me to get it into my brain that this is a NERVE ISSUE not a skin issue. Im so tempted for topical solutions...yet I know that it will do me no good. I still have minor redness and swelling...however, nothing so alarming as to require a biopsy. And I have seen many doctors for this...several dermatologists....and none recommended a biopsy at any point.

But unfortunately this is a nerve issue...as my pain fluctuates and moves around a bit. Its random at times.

Its frustrating. None of us ladies derserve this crap.

Ria, does stretching work for you? What about yoga?

Im at the point where I can no longer wear pants and even underwear is only a must on my period.

Sending love to you all,

Noni

How long have you been doing the Glazier Method Ria? Just curious. I too find my vulvar specialist is not interested in talking about the pelvic floor either and if it doesn't involve tablets she doesn't want to know. I did get advised by a GU clinic to look at my pelvic floor urgently though as they've found alot of women find it helpful and the consultant noticed I had very tight adductors when she examined me, and my GP is also interested in that angle too so it just seems to be the UK specialists who are not interested. Are you using Dr Glazier's home unit?

I use vaseline on the skin or one side of skin rubs on the other and makes things alot worse, I tried using nothing but the pain flared up badly so had to go back to vaseline. Oils make me worse for some reason. I do deep reathing exercises to relax the pelvic floor and self hypnosis to keep me calm (I'm a trained Hypnotherapist so self hypnosis is a doddle for me!). Ami 50 mg and Pregabalin currently at 200mg daily aren't helping much so I think I need to up my Pregabalin dose. I find it odd though that medication for nerve related pain doesn't help alot of women and it should really if it's nerves.

Hello Ladies,

First and foremost I am a Holistic therapist I have tried everything spent a fortune on seeing consultants privatley yes here in the UK
we have NHS but if you want to see specific Specialists you pay. When I went on this journey I was misdiagnosed told I had Lichen Scelorosis so I went on the net to seek out an expert went to see Professor Reid who did a Biopsy couldnt find anything wrong except an yeast infection she treated me with Kentoconzole, when the pain continued she didnt know what to do and suggested Amitriptyline well at this stage I had had the problem for 18 months and coming from an holistic background I thought I would try everything. Acupuncture and Hypnotherapy which I am trained in, still burning still pissed off sorry but I cannot believe the people I have seen and the money I have spent. So I made an appointment to see John Williams who specialises in vulva problems in America, I could not get on the flight for the burning I was buying cold cans of pop just to sit on had to come home and cancel appointment. So what next I thought seen 10 leading consultants in there various field urologist, dermotologists , gyn, all told me to take the TCA Ami which made me tired and like a zombie. So ladies my journey then took me to my GUMed clinic couldnt believe I was making appointment as I believed this was for sexual health, well let me tell you if you have ANY worries about yeast itching discomfort go to your local GUMed they are fantastic they check everything all blood test done they are very good checking everything and here in the UK free all medicines handed straight to you. CONT!D

Hello Ladies

Well the Saga continues as I am being treated at the GUMed still burning I am sent to the Vulva Clinic in the meantime I am seeing Dr Glazer on skype and purchased the home biofeedback went to my appointment told my consultant about Biofeedback he said waste of time the only thing it will do is give me a strong pelvic muscles, didnt listen to him carried on with the Biofeedback 20mins twice a day Dr Glazer said it rest the muscles. So now I am on Noratriptyline doing fine 75mg a day. Also went to see Hormone specialist and went on Bioidentical Hormones, started to look at creams I was using anything with polyglyco in irritates the skin, and of course alcohol a Nooooo Nooooo which is in alot of creams lotions ect. Dr Glazer said not to take any medication as the Biofeedback would take it away, well it never, and I used both and other things as mentioned.

My take on this is dont spend a fortune because they all say the same pain medication 6 months then taper it off. Well where am I now had a reaction to the noratriptyline so had to stop taking it, so now I am on venlafaxine went uptp 150mg a day but aches and pains in muscles made me go down to 37.5. I have not tried Gabapentin but studies I have looked at say they get good results with nerve pain, I am waiting to see consultant I may try this next.

Hello Ladies

Back again Well my next focus is on the mind when I get the Sensation stopped calling it pain I welcome it as pleasure I know you think I have lost the plot but mind over matter Yoga I do everyday and I am a Reiki Master so I give myself Reiki, and tell myself IT CAME FROM NOWHERE IT CAN GO BACK TO NOWHERE. I often wonder what connects all us Ladies to having this there must be a common denominator? Dr Glazer said not to put anything on the vulva or vagina you could not eat NOOOOOOOO not ice cream olive oil as its pure. So I have had a good old rant sorry if spelling wrong or punctuation just keep letting it out on the keys. I have burning discomfort with underwear on or off it makes no difference so I wear it and cut the gusset out of leggings or tights, wear boyfriend jeans from allsaints they are comfy.

Hope this helps as I say I am studying this subject and should get a degree at anytime soon I could think of other things to think about.................................

Lovely ladies I wish you all well on this tiresome road but hey we will get there Ria

Hey Ria

What exactely is Reiki? And how does it ease your pain?

HELLO LADIES

Reiki is a form of healing working with energy please look it up on the web it has helped me no end. As a Reiki Master/Hypnotherapist the therapys help so much to heal the mind body and spirit. It does not matter what religion you are.

I believe we have to heal ourselves but we also need medical intervention. If you look up a Reiki practitioner make sure they are registered, there are many books written on Reiki, I would suggest you book a session and maybe even go on the courses I am so pleased I had this before I started with the vulvodynia.

Ria

Do you need a practitioner to perform Reiki? Or can you do it on your own?

Hi Noni,

You need a practioner someone you connect with. Reiki works with energy and it heals the mind body and spirit, I have been a practioner for ovr 10 years thank God I had it before the nasty V came along. I know some beauty therapist do it in salons but if I was you I would go to someone who works with energy on a holistic basis, be sure it is someone you like, you wouldnt go to the hairdressers and let them do your hair if you did not connect with them, treat it on the same basis. Do your research on line and there are many books on the subject.

One thing I have learned on this journey is the mind must remain strong.......... Oh I know I have been there where I did not want to continue living with this hell of a condition but we have to each day is a new day and healing takes place each day, if our minds are not strong the body will not heal itself I have always believed this Noni right from an early age.

Do your research and give it a go Let me know how you go on, we have to use many things to get well this is just another weapon on our road of getting better


Keep Smiling

Ria