Print

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

[Echinacea]

Hi Rose,
I will definately look into homeopathy and let you know how I get on.  Thank you so much again for trying to help!
I do hope you continue to be ok with your cream.
Echinacea

[Hurdity]

Hi Echinacea

I beg to disagree fundamentally - it's not homeopathy you need for VA but oestrogen.
 
Fine for anyone to try homeopathy because the placebo is very powerful and great if the mind can overcome some things - but it can't cure VA. Only a topical oestrogen will do so. I appreciate others are trying to help but please don't waste your money or your time on this. It's a red herring. It (Vagifem and other topical oestrogens) has been tested on placebo controlled double blind trials - ie recipients don't know what they are getting and placebos do not work on VA.

I am sorry to hear that you are allergic to the fillers, and in your situation I would suggest you try the estring which doesn't have any, although it is a ring - so you maybe allergic to that - but must be worth a try. What did your gynae suggest?

As for increase in belly size - that can occur naturally over time anyway as you get further into meno whatever you are using. My belly is still relatively flat and I use vagifem and full HRT so it is a personal thing.

Hurdity x

[Rose]

Yes that's true, Hurdity, oestrogen is definitely needed but for some of us, it's hard to get that oestrogen when it's got fillers in it, that we are allergic/sensitive to. It would just be so easy to insert Vagifem and be done with it. It is honestly depressing when you seem to be in the minority and that's why I have been trying to help Echinacea  try to find a way around this. Luckily, here in Oz, we can get purer forms of oestrogen from Compounding Labs. I have spoken to women who have tried homeopathy and it's helped them. I imagine you have tried ring, Echinacea but if you haven't, do give anything a go. As for increase in belly size, my doc said that the extra oestrogen can increase your bust size (great if you've had mine that looked like droopy sacks!) and add that extra bit of weight. Doesn't happen to everyone of course but this site has made me realize that I'm not alone in being super sensitive to medication and that is worth knowing!   

[Echinacea]

Hi Hurdity and Rose,
Thanks for trying to help!
I have tried the estring, and it also caused a massive reaction.  Was told it was the silicone in the ring. Why was I not surprised?
I have even tried estradot/evoril patches - three days in and a swollen vulva/vagina and burning pain like never before!  Again, was told a chemical in the patch that carries the oestrogen, was causing it.
So you see, think I have just about tried everything, over the last 4 years.
Depressed does not express how bad I feel about this.
I do really appreciate the help.  Rose, I know you understand how frustrating it is to know that usually most ladies find something, but your body does not want to play ball.  I will look into homeopathy, but can't help feeling that it is oestrogen that I need.  I will try anything now though!
Hurdity - my gynae has run out of suggestions, and I keep trying things I have tried before, in the hope things have changed.  I think he despairs of me!
I think I have no option but to try and save the money and find a private doctor who will prescribe a compounded cream.  Just need a lottery win now.....
Echinace

[Rose]

Hi Echinacea. yes I do understand how depressing this is and a lot of people don't understand how it feels. I am sensitive to many medications and my doctor keeps trying to make me take them, I do but hey ho I react badly to them. I've got to the stage where I won't be a guinea pig anymore and don't care what my doctors think. It's not them that has to suffer. Deep down we both know that oestrogen is needed but in a purer form. Until you find something, I was just thinking that my daughter, who has terrible eczema, uses natural coconut oil and that helps the unbearable itch she gets. Keep me posted okay?   

[Echinacea]

Hi Rose,
Thanks again for your reply.
Am seeing the gynae next week, and am going to push for a referral to a vulvar/dermatology clinic that I know of about 30 miles away.  Maybe they could prescribe something.  I was sent there around 3 years ago, when I had vulvodynia.  At that point, there was not much they could do for me, but this is different now.
I can but ask!
Will keep you posted as to the response I get!
All the best,
Echinacea

[Rose]

Hi Echinacea, I've got vulvodynia as well. The referred pain is bad enough without VA! Tried another nerve pain med for that and guess what?...terrible side effects. I will keep my fingers crossed for you that they come up with something to help you.
Rose x

[Echinacea]

Hi Rose,
Arn't we the lucky ones?!  Vulvodynia was bad enough, then the VA too! 
My vulvodynia is loads better than it used to be, but can flare up when stressed etc.  Don't think you are ever really free of it.
I did take nerve meds etc, but like you, had awful side effects.  It seems that pharmaceutacols (sp!) are not for us!
How long have you had it?  What have you tried?
Would like to hear your experience.
Some days I feel very resigned to all this, almost 'given up' on ever feeling normal again.  Other days, so depressed, I cry alot.  Other days, not very often, I feel almost used to it all! Sex like non-existent at moment. Ouch.
Regards
Echinace

[Rose]

Hi Echinacea, at least we can console ourselves that there are at least two of us who don't react well to certain meds! Not being alone in this certainly helps me, so thank you for replying. I have been on Fentanyl patches for chronic back pain (nerve impingement, you name it!) so I only started to notice how bad the Vulvodynia was when the patches weren't lasting as long as they should. The VA certainly has made things worse. Now I have to change patches every 2 instead of 3 days. I also was given Gabapentin and that was a total nightmare (slurred speech, short term memory loss) and have also tried Endep (Ad's) but because I was given two different kinds of antidepressants, I got serotonin syndrome which could have killed me. In short, I am very wary of medications and doctors aren't Gods. I am stressed by University at the moment but also with a husband who neither knows nor cares about my condition. If he were like this, I'd be searching the net to find out all I could do to help him. I hope you have someone in your life who is understanding as it helps, so much. If not, you can moan away to your hearts content and I'll listen. What things have you tried?
ps; I get very depressed too but I know that when you get out of the house and talk to others, it helps the morale. I wish I could use Vagifem 
Rose x

[Echinacea]

Hi Rose,
Sorry to hear you OH is uncaring..that is awful for you, when you have all this to put up with.  You must feel so down at times. Big hug from me x.
My husband is ok, quite supportive, does not really understand these things, but tolerates my moans and groans. Gets irritable with me at times, understandably. So in that, I know I am fortunate.
I have tried all the usual things, as you know, and amytriptylline (AD), gave be bad side effects, Gabapentin - awful side effects, nortriptyllilne (AD) - bad side effects.  Had enough then!
I agree about doctors.  I do not trust them to know more than me now about all this!  We research, in depth, anything that may help, obviously they do not have the time.  A lot of the time they will just give you the next thing on the list to try, just to get you out of the surgery.  I joke that I am the 'heartsink' patient, I walk in and their heart sinks!
I too, wish I could use vagifem.  It seems so simple and effective, and so many others have got on so well with it.
Please keep in touch, and I do wish you well.
Echinacea

[Echinacea]

Hi Rose
Hope I find you well.
Could I ask, out of interest, what are the ingredients in the compounded cream you have?
Just in case I do decide to go down the private route?
Thanks
Echinacea

[Rose]

Hi Echinacea
I have been suffering from the usual cystitis like symptoms which as you know, go with VA. I was doing fine but know I need to up the dosage so I will try to see my Menopause Doc this week. I wasn't given the ingredients but will ask doc for you, okay? Feeling pretty rotten at moment and the Vuladynia seems to be playing up too. Does this ever end? I was doing so well but obviously the bladder isn't getting enough oestrogen. I really wish I could use Vagifem!!!!
Rose

[Echinacea]

Hi Rose,
so sorry you are struggling again!
I, too, am having a rough weekend.  The vulvodynia, which has been pretty 'quiet' for ages, has suddenly flared up.  Oh, the pain! I know that I really need to get some oestrogen in there.......!
Thanks in advance for asking doc.  Am seriously researching a private solution at the moment.
We get one life, and the quality of it is being ruined by this.
I do wish you well, hope you have a better day.
Echinacea

[Rose]

It's a long week-end here and it seems never ending. Echinacea! I think I can take the pain when I'm on my own but everyone is off and I'm fed up! My vulvodynia has flared up with the VA. Let me know how you get on with your research and I'll keep you posted my end. We WILL get through this!

[Taz2]

This sounds such a horrible illness to have. I don't know if the societies mentioned in this link can be of help or whether you have exhausted all of the painkilling and treatment possibilities already http://www.nhs.uk/conditions/vulvodynia/Pages/Introduction.aspx

Taz