Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[Hattie]

Is there anyone on this forum please who has been 'living' with Chronic Pain for several years and who would be willing to chat to me by personal message ?

My pain started Five years ago this May and is vulva pain - i am 60.

During these years i have put my faith in whatever remedy i have been trying at the time be it medication, physiotherapy, acupuncture etc but things are no better. Now i am putting faith in my body to find some sort of answer as i don't know where else to turn to.

I 'live' now by a series of different distractions and a small element of hope - today i am looking forward to watching the Voice on tv- wednesday i will be seeing my daughter.

Thank you

Hattie X

[Dancinggirl]

Hi Hattie
Have you tried local and/or systemic oestrogen?  I have had horrible burning urethra and discomfort around my vaginal area on and off for many years - I tried local oestrogen when I wasn't on full HRT which helped a bit but I'm now on systemic and local oestrogen and now I'm really comfortable for the first time for years.
I still use Multi Gyn Actigel every night to keep that whole area healthy and I make sure I empty my bladder properly every time.
I would definitely try some local oestrogen as this would be quite safe.
You have my sympathy - pain around that area is truly horrible and makes one feel miserable.
DG x

[Hattie]

Thanks for your reply Dancinggirl - i'm glad that the HRT is helping you.

I used vagifem for over two years and ovestin applied to the vulva before it all got too sensitive and i couldn't stand it any more.

The vagifem made no difference to the pain which gradually got worse during that time.

I am not willing to go on systemic oestrogen at 60 and i would probably need to see a gynae privately to obtain it.

I now have daily burning pain or severe itching, swelling and tight muscles around the irritated nerves so it is pretty chronic.

Some days i can't believe your body could do this to you.

Hattie X

[rosebud57]

Hi Hattie,

You probably know about this site but just in case I've put the link below.

http://www.vulvalpainsociety.org/vps/index.php/vulval-conditions/vulvodynia

I have no personal experience of this but is sounds miserable and I wish you well.

[Dancinggirl]

I did try using the Estring which gives a more continuous small amount of oestrogen and I found this the least irritating and the most effective.  The only thing I found was I tended to get a bit of thrush with it but managed to control that by using lots of Multi Gyn Actigel.  When I started using Vagifem it made me burn and it irritated quite a bit but now I'm using full HRT I've gone back to using vagifem twice a week alongside and it seems to be working better now. You could try the Estring to really give that area a boost of local oestrogen to see if it helps. It is latex so there aren't any additives that can irritate - Vagifem and the oestrogen creams have fillers that made me burn. You simply slip the Estring up inside and it sits around the neck of the uterus and you quickly forget it's there - you just change it every 3 months.  I used to shove a dollop of Multi Gyn up inside every night to help keep the balance right.
I can understand you not wishing to use full HRT especially if you don't get other meno symptoms - I wasn't getting any sleep because of flushes and finding it difficult to keep working, so being back of full HRT (though on a very low dose) has made life a lot easier.
I think this whole issue around vaginal discomfort is a difficult one to treat - we are all different and finding a way to control the symptoms seems to vary from one women to the other. You seem to have tried every alternative in the book - probably at great expense - so perhaps going back to local oestrogen and concentrating on keeping the vaginal flora more acidic might be a good and possibly the safest option at the moment.
I do think the burning and itching is a sign that the flora balance is wrong, so do try using some of those treatments that restore the acidic balance and eat lots of live yogurt.  I assume you practise the 'be kind to your bits' regime of showers not baths, nothing scented etc.?
I think the tight muscles and nerves happen because you are in pain because of the itching a burning - it's a vicious circle.
I hope thats helpful  DG x

 

[Judith57]

Hi Hattie, sorry to hear you are still suffering. I am no better either I'm afraid but I think my problem is a mixture of a few things, a trapped or compressed pudendal nerve on the right side which makes it impossible for me to sit down normally, it causes intense pain and then causes my pelvic floor to go into a spasm which then leads to a burning pain in my vagina. Dr B also diagnosed a rectocele last year which causes a whole host of other issues. I was also diagnosed with interstitial cystitis last year which is miserable with intense burning and bladder pain. As you know, I really went through the mill last year trying to get myself better but now I am just taking amitriptyline and HRT and hoping my body will sort itself out. It is so awful living with chronic pain, especially in the vulva. I could live with chronic pain in my knee or shoulder but this really is the pits!

I know what you mean by distraction, I now stand on the train doing a Su Doku Puzzle to take my mind off the pain during the journey to and from work. I just try to make sure that I don't do anything to cause a flare-up but it means I am only living a half-life, existing rather than living! Work is a good distraction for me but I need to use a special cushion and, even then, sometimes the burning is so bad that I have to go to the loo and pour cold water over my vulva  .

I am seriously considering giving up work now to try and concentrate on getting better, I might look into Body Stress Release as I have read that it can be quite successful in treating vulval pain.

I know what you mean about not quite believing your body could treat you this way.

Take care

Judith x x

[Hattie]

Hi Hattie,

You probably know about this site but just in case I've put the link below.

http://www.vulvalpainsociety.org/vps/index.php/vulval-conditions/vulvodynia

I have no personal experience of this but is sounds miserable and I wish you well.

Thanks Rosebud - i have known about the vulva pain society for some time.

Hattie X

[Hattie]

You seem to have tried every alternative in the book - probably at great expense - so perhaps going back to local oestrogen and concentrating on keeping the vaginal flora more acidic might be a good and possibly the safest option at the moment.
I do think the burning and itching is a sign that the flora balance is wrong, so do try using some of those treatments that restore the acidic balance and eat lots of live yogurt.  I assume you practise the 'be kind to your bits' regime of showers not baths, nothing scented etc.?
I think the tight muscles and nerves happen because you are in pain because of the itching a burning - it's a vicious circle.
I hope thats helpful  DG x

Thanks for your reply Dancinggirl - my pain is all on one side and i know that it is an irritated nerve problem - a physio has explained to me that the tight muscle reaction is the area protecting itself.

I did not have VA before all this and but being postmeno i have been told that i was vulnerable to this happening so maybe the oestrogen comes into it all there - i am really not sure what amount of oestrogen would 'cure ' this now.

Hattie X

[Hattie]

I am only living a half-life, existing rather than living!

Judith x x

Hi Judith

Fear that we are in a similar boat and can't get off - i am not sure where i will look to this year as i feel that i am all out of options.

I watched Poldark last week and he was asked if his war wound pain still bothered him - he said that it no longer did - on the Missing programme the man whose leg had been badly crushed in a car door also said that his pain had somehow gone after 8 years - my ears **** up at comments like this now and i think can this pain some how stop.

My emotions are all over the place - vulnerability and fear being the worst - i am sure that you feel the same.

Take care too.

Hattie x

[Judith57]

Hi Hattie, my emotions are all over the place too, on a fairly pain-free day sometimes I make the mistake of thinking I am 'normal' but then it all comes crashing down again. I have very dark times too as I can't imagine living the rest of my life like this. My brother phoned me last night and asked me to join him and his family on holiday in Cornwall this summer but I can't even imagine how I would tolerate the journey down there. It makes me so sad   

[rosebud57]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3324744/
http://www.research.vt.edu/resmag/sciencecol/hypnosis96.html

I found these two web links for you regarding hypnotherapy and pain relief.  I know it's completely off the wall but sometimes the most unlikely things work.  There are proper medical hypnotherapists out there so it might be worth doing a bit of research. 

Pain is a strange thing, and the brain is the signal sender for pain so anything that can break the link might be worth thinking about.

[Hattie]

Hi Judith

All i can do is    with you - the furthest i can tolerate now is a 30minute journey into town or my daughters and i am not driving my husband is. I used to be afraid that the medication might cloud my driving judgement now i am afraid that the pain with affect my concentration.

I have had to turn down my invite to a family wedding which is in a few weeks time - it hurts deep down as my head wants to go with everyone else - so i know how you feel about Cornwall - i know that i won't stand the journey let alone dolling myself up for a wedding when i feel like such crap , staying away and meeting different people - it is all going to be too much.

When my dad was ill he used to say 'you have to know your limits' - i keep telling myself this now - staying within my limits is where i am safe, where i can do what i can manage - not to push somewhere beyond even if i want to and that is hard for me as i have always pushed myself to do things - planned and organised things for and around my family.

I'm blinkered about living the rest of my life like this but i know that it is on the cards - each day i think tomorrow will be better and like you say some days are. Three weeks ago i went for a walk with not too much pain but then it all comes back.

All such negative stuff to put here on the forum but it is the reality   

Hattie X

[Hattie]

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3324744/
http://www.research.vt.edu/resmag/sciencecol/hypnosis96.html

I found these two web links for you regarding hypnotherapy and pain relief.  I know it's completely off the wall but sometimes the most unlikely things work.  There are proper medical hypnotherapists out there so it might be worth doing a bit of research. 

Pain is a strange thing, and the brain is the signal sender for pain so anything that can break the link might be worth thinking about.

Thank you Rosebud i will look at these links. Hypnotherapy is not something i have tried and it is not off the wall at all.

One consultant has told me that the brain is a monster when it comes to maintaining pain - need the switch off button somewhere.

Hattie X

[Judith57]

I hate the 'limits' that this has imposed on me, like you I was always a whirlwind, never stopping and living life nineteen to the dozen. I really struggle to understand how this has happened to me but just keep telling myself 'it is what it is, try to deal with it and hope it goes away'. My other half keeps telling me to get back on the medical merry go round but I have lost all my confidence in the medical profession I'm afraid.

Take care,

Judith x x

[CLKD]

All I can offer is a  :big hug: …………. chronic pain is tiring, difficult, restrictive