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[Paula1966]

Hello

Sorry if this too much info but I was wondering if anyone else suffers from burning, tingling and intense itching in the pubic area. I am now also starting suffer from pelvic pain similar to that when I was pregnant many years ago.

When I mentioned the itching to my Gp she said had I put cream on the area to stop the itching!! But offered no other help.

I am really big highs and lows as well at the moment. I am considering paying privately to see a menopause specialist in the north west. If anyone can recommend someone please pm me

Thank you

Paula

[ancient runner]

It sounds a bit like vaginal atrophy - do you mean around your vulva? You'd need an oestrogen cream or pessary for that if you and your GP is possibly being a bit dozy...

[dmilly1234]

   Hi, I have suffered from vulvodynia since got into my 40's ( I am now 52) I have gone through the menopause, as not had a period for around two years. I had to do research on the Internet and diagnosed myself! I saw a gynecologist, who confirmed vulvodynia by a tip test. I was put on ampitryptiline, gabapentin ( bad side effects for me, didn't work) then was put on duloxetine! The side effects were horrendous and the withdrawal, they did help somewhat at the time but caused high pulse rate, hot sweats, ( worse than flushes) bruising easily. Anyway finished my last one on Wednesday, have come down with a horrible UTI, some on trimethoprim for three days, following a dip test! Feeling generally unwell at the moment. I have a burning, raw vulva normally, find it too painful to have sex, been prescribed gabapentin gel ( nerve block) very expensive, as was told by a pain specialist to try it, as said all to do with pain pathways. I have IBS too and have had endometriosis in the past ( which has cleared since going through menopause) I spoke to a really helpful lady on a group on Facebook called pudendall Neuralgia and pelvic pain UK. It is a secret group. I also follow a page called Dr Annies Women's health. Lots of amazing videos on there, she is very informative about the menopause and how vaginal hrt can make so much difference, as I think now I am getting older, it is becoming more like vaginal atrophy. Also check out pinterest, if not already on it? It is a free app on play store and has so many helpful boards on there. You can create your own and even make it a secret board, if more personal. You can search for practically anything. Don't suffer in silence. You don't need too. I was also told can be an Imbedded infection, by a lady on the pudendal nerve group. She has visited lots of specialists like Dr Nick Pannay  ( he is private though) depends on how much spare cash you can spare. Do you have private medical cover? They don't always cover chronic conditions  ( ie: vulvodynia ) but probably would cover vaginally atrophy and the menopause. Hope you find the relief you deserve. I am going to look into going down the vaginal hrt route personally. Much love xxx

[ancient runner]

There is a poster on here called Maryjane who knows all about vulvodynia! I think she is doing very well after seeing Dr Annie in Bristol.

[Paula1966]

Thank you so much ladies - that has been really helpful. Will look into all you have said.

I have been told by my Gp I can't have HRT due to my weight so need to find other options

[ancient runner]

You can have local HRT though Paula. Tiny doses, delivered where you need them. I don't think weight is a contraindication with that type of oestrogen.

[dmilly1234]

Hi, since doing more research into past endometriosis and vulvodynia, I have decided that hrt may not be the right course for me, as there is a risk that you can get reoccurrence of adhesions, even if are postmenopausal, which have heard can raise risk of endometrial cancers, for me personally, I dont think it is worth taking the chance; therefore won't be pursuing this option, if you don't have a history of endometriosis, then this maybe the right direction to go. I am going to be looking into more natural lubricants,  like replens MD again for moisturising and maybe a nerve block like gabapentin gel again to help with the vulva pain, also going to see a female doctor on the NHS. All the best ladies x

[Jenna]

Hi dmilly1234 - I find 'Yes' water-based vaginal moisturiser (also available on prescription) very soothing for soreness. Here is how it can help vulvodynia:

https://www.yesyesyes.org/vulvodynia/#customers

Hope that might help you. 

[Paula1966]

You can have local HRT though Paula. Tiny doses, delivered where you need them. I don't think weight is a contraindication with that type of oestrogen.

Thank you that's something worth looking at 

[Kkay]

Hello,

Some time ago you mentioned that there is a poster here called MaryJane who has experience of vulvodynia. I've tried searching for her posts using the search button but come up with nothing. How can I find her? I'm newish to the site...

Thanks

[Maryjane]

I am here 🙋

[Kkay]

I found you !!

I am newish to this great site and sometimes have trouble navigating. Thanks for getting in touch !

I went through Premature ovarian failure at 42 and had a horrific time. One of my main complaints was a burning urethra and an achey, irritable bladder (no UTIs) It took 18 months to find an HRT that worked and Estrogel did the trick finally. All was well and I was symptom-free for ten years.

About 18 months ago my doctor asked me to switch to Livial (Tibolone) as he was wary of my being on estrogen for so long. For about a year all was well until I developed a raging UTI and was subsequently diagnosed with VA. Its horrific. I think I'm developing some form of vulvodynia / pudendal nerve irritation as the bladder pain is more frequent.

I've run back to Estrogel (roughly been back on it -two puffs a day for two months.).  I also did a loading dose of Vagifem followed by twice weekly for a total of about a month, with no improvement. I realise I should increase the vagifem to every other day and see.
Over the holidays I became desperate and started Premarin cream as its quite strong but after a few okay days with manageable symptoms I've had terrible bladder spasms and am really in despair.

Someone here mentioned you have managed Vulvodynia. If you would direct me to any old posts of yours re this, I'd really appreciate it.

Best wishes and happy New Year

[Maryjane]

I have pudendal issues also . I am really sorry but I don't no how to direct you.

Are you from the UK ?

As far as I am aware UK , you can stay on HRT for ever re the latest guidelines , so long as you are aware of the risk/ benefits. By the sounds of it coming off the HRT has sparked it all off again?

My VA/pudendal / vulvodynia started 4 years ago age 46 , now 50.

I am not cured , but managed it has taken a lot of trial and error and I will be on HRT for the rest of my life.

I have seen the very best the UK has to offer re PN/ vulvodynia/ VA, bottom line for ME is the bladder/VA issues causes atrophy which tightens around the PN nerve and causes irritation , and I am sure you are aware the vulva is one mass of tiny pudendal nerve endings that once irritated are hard to calm down , as they get over sensitised and for me there is no magic bullet.

I use 1.5mg of sandrena, vagifem should be daily but I use it every other as it can irritate in itself , estriol rubbed into my old episiotomy scars also.

I also use twice a day a blob of multigyn act gel with YES oilbased mixed together and massage into the vestibule, I have tried many other lotions and potions and this is the best at the moment for me.

Some ladies also take drugs like amitriptyline to calm down the nerve pathways ( I don't ) , some ladies take an antihistamine twice a day to calm down the mast cell receptors in the bladder , for some this helps a lot.

Sitting too much is bad if this effects you. I can now wear pants and loose fitting jeans again , so that is progress.

I eat very healthy ( I have a nutritionist) my immune system has been pretty poor , but I am seeing good improvements , I take a very good probiotics/ vitamins/ and digestive enzymes.

Some ladies see a women's health physio , these need to be researched as a bad physio is worse than no physio.

You may also have an infection ( regardless of a negative result) a bio-film infection that attaches itself to the bladder wall , and is very hard to detect , and only a tiny handful of experts worldwide can deal with this, and treatment is gruelling.

The pudendal nerve also innervates the urethra and can become a chicken and egg situation.

If you have any other questions please ask , as VA/ PN/ V are miserable conditions to have and life changing as they stop/ change so much of what I can do.

[Maryjane]

I also walk five miles a day briskly , regardless of the weather , and do yoga/stretches every am.

I am working on meditation as I find it hard to shut off.

[Kkay]

Thank you so much for all of this MaryJane; greatly appreciated.

I will read and re-read what you've said and digest it slowly, but in the meantime I have one question for you. How is a biofilm infection diagnosed ?

Thank you again for sharing your experience and what you have learned.