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[Rose]

My doctor has just emailed me to say that she believes that I have Vulvodynia. Has anyone been diagnosed with this? My head is just going round and round as I really don't understand what is happening. One other thing; I have terrible itching on the outside but also anal itching as well. Has anyone had this problem?

[honeybun]

It has been discussed before. If you do a search then you should be able to read what has been said.

I am sure others will be along soon to help.


Honeyb
X

[Taz2]

Hi Rose - this thread is about Vulvodynia http://www.menopausematters.co.uk/forum/index.php/topic,21189.msg323221.html#msg323221. You can also read more about it here http://www.vulvalpainsociety.org/vps/index.php/vulval-conditions/vulvodynia. It can cause burning pain around the anus but I'm not sure about itching. Although it's a shock to be given a diagnosis you should now be on the way to getting some help for your symptoms.

Taz 

[Rose]

Thank you so much, Taz 2. I don't know if I am relieved to be given a diagnosis or to cry but thanks for providing those links.

[Echinacea]

Hello Rose,
Yes, I have had vulvodynia.  Please take heart from the fact that I use the term 'have had'.  I may be being optimistic, but have not had the pain for some months now.  You will recover!
Mine started age 50 (am 55 now).  It was sudden and devastating.  Then followed the worst 3 months of my life.  The pain was excrutiating, as you will know.  Also, felt unable to tell anyone, except OH. 
After three months, the pain subsided considerably.  Then another couple of years of regular 'flare-ups', each one not lasting as long.  Almost pain free in between.  Have not had a flare for 6 months now.
The main things I have learnt (the hard way!) are these:
Stress does make it so much worse, and can even cause a flare up.  When my mother was diagnosed with cancer, and was terminally ill, my pain was off the scale.  The best thing I found was to take a small dose of Lorazepam (a tranquilliser) at night for about three nights, and it would help enormously.  Obviously, this is not advised very often, but in an emergency, to help you through, it does help.
Alcohol - the enemy!  A big trigger of pain.  Best to stop for a while, and I can now never drink red wine or sherry, only 'white' drinks.
Have you been prescribed Amytriptylline?  It is an antidepressant, that taken in small doses, calms down the nerves.  I did take this for a couple of years and it did help, but it does take some time.
Do you have a supportive partner?  Sex was impossible for some time.  My gynaecologist said do not even try while in an acute phase (as if!), but when things feel a bit better, go slow!
There is a book, available on Amazon, called the Vulvodynia survival guide.  It is very good, and will answer all your questions.  Bear in mind, some of the stuff is 'worst case scenario'.  If this has started with your menopause, it is hormone related.  The pain is caused by fluctuating hormones, and when they settle, the pain will settle.  It just takes time?
Have you been referred to a gynaecologist?  I do hope so, because you need specialist treatment for this.
Hope this has been of some help.
Remember, the good news is, it does improve, and hopefully go away in the end! Patience being a virtue....!
Good luck, please post and let me know how you are.
Echinacea

[Ju Ju]

It might be worth looking into Body Stress Release www.bodystressrelease.org.uk Not many practitioners in the UK yet, but there may be one near you. There has been some success with this condition, so much so that some gynaecologists have referred patients.

[Eddie]

Hi Rose. I too have this, I've had it now for a few years. At first I was treated for va, but it never really went away. For the last 6-9 months it has been constant. Def cyclic, my gynae has tried steroid creams and amytriptiline, but no use. I am now waiting for the end of the month as I am starting femoston conti instead of sequi. Pretty much last resort. What treatment are you going to try?
Eddie. X

[Rose]

Hi to everyone! My two kids were here from Interstate with their partners, for the weekend, so at least that made me happy! To recap; I have  chronic back pain and have to use pain relief patches. This 'new' pain only started a few months ago but doc said this is quite common as the nerves are all connected. Anyway I thought it was just pain from the bladder due to hormone flux I have realised something else was happening. The pain is very high up in my vagina and sex just makes it flare up. I have tried vagifem/creams etc but can't seem to tolerate them. The pain can take my breath away. I can't take ad because of serotonin syndrome (long story) but think I will take lyrica which is a nerve med. I am just wandering around not knowing what to do. Did any fellow suffers use vagifem or oestrogen creams and did they help? I have all the symptoms of VA but the pain is something else. I have a great doctor who is leaving and it was she who realized what was happening. My gynaecologist doesn't even think there is anything wrong with my vagina but did say I was pretty sensitive 'up there' (understatement). I am just glad to have found others who are in the same boat and it gives me some heart to know that I can get better in time. Thank you.

[Rose]

Sorry everyone but how do you find old threads from others?

[Eddie]

There are two search options, up to the right. Or below where it says new posts I think.

[Suzi Q]

Hi to everyone! My two kids were here from Interstate with their partners, for the weekend, so at least that made me happy! To recap; I have  chronic back pain and have to use pain relief patches. This 'new' pain only started a few months ago but doc said this is quite common as the nerves are all connected. Anyway I thought it was just pain from the bladder due to hormone flux I have realised something else was happening. The pain is very high up in my vagina and sex just makes it flare up. I have tried vagifem/creams etc but can't seem to tolerate them. The pain can take my breath away. I can't take ad because of serotonin syndrome (long story) but think I will take lyrica which is a nerve med. I am just wandering around not knowing what to do. Did any fellow suffers use vagifem or oestrogen creams and did they help? I have all the symptoms of VA but the pain is something else. I have a great doctor who is leaving and it was she who realized what was happening. My gynaecologist doesn't even think there is anything wrong with my vagina but did say I was pretty sensitive 'up there' (understatement). I am just glad to have found others who are in the same boat and it gives me some heart to know that I can get better in time. Thank you.

Is it just when you have sex? If it isnt id go back check chack check

[Rose]

No Suzi it's not only when I have sex, unfortunately. That just flares it up. Being on pain relief already I was only aware of a nagging pain but sex makes it unbearable. I noticed that instead of changing the patch every 3 days, I needed to change it after 2 because I was in so much pain. Naturally I asked my doctor, who then realized that my symptoms weren't just atrophy and that my body was needing more pain relief. I used oestrogen cream (supplied by my meno doctor) today which hasn't got as many irritants in it and it's helping so far. Just hope that works! Vaginal Atrophy is making the pain worse too but because I am on morphine, I am hyper sensitive to a lot of things. I wish I could use Vagifem but can't. By the way thanks Eddie, I'll try to find those threads. Thanks everyone!