Help - anyone out there who has overcome VA

Thank you so much, I will bear all of this in mind and try your suggestions etc. My symptoms have improved since August when it all started for me but it's the threat and worry that wears me down and then the 'flare ups' which seem to occur unexpectedly and which are hard to accept.

Did you say you have been suffering since September, have you had some improvement too?

Last night I used a vagifem a day early and am going to try three a week. My GPs are useless; they have told me so many different things (there are about 6 GPs in the surgery and you see a different one each time if you are ulucky). That hasn't helped as one said I should be better by now and another said it can take ages, another said it might not go!!! My head is a shed with it all. They firstly referred me to a urologist who I see in Feb and haven't referred me to a gynaecoogist but I am going to ask for that though the last GP said it could take months to get an appointment on the NHS.

Anyway with your and others suggestions I a going to try a few alternative approaches and see how I go.

Best wishes and I will let you know how I go

Hi again,

I'm glad you've improved since August. I initially got better on Premarin, but didnt want to continue on it as it is a synthetic drug made from horse urine (not joking), so switched to vagifem which is weaker and am still struggling. Re you, I wouldn't bother with the urologist frankly, as if you've improved on Vagifem then its most probably just vaginal atrophy due to low estrogen and urologists havent a clue, sorry to say re that. I've also found that most gynecologists are astonishingly ill-informed about low estrogen problems. If you do ask for a referral, can you ask to see a menopause specialist? My bet would be on someone like that. Are there any walk-in women's clinics or centers near you? Maybe menopause matters could help you find someone? There's a lot of useful info in the threads on vaginal atrophy on that site, as I mentioned.

Good luck and when you see your GP (one of the six!) INSIST on being given enough Vagifem . Good luck!

Thank you so much for your sound advice. I will proceed as you say. I do have bad days still but there has been an improvement. I hope you get some progress on vagifem..it took me about 2 months on it to notice any improvemnet. i thought I was alone, odd or something other thand VA was wrong. I am in England by the way,

Thanks again

I went to see a urogynocologist and it was a waste of money and time. As I sat there shaking from burning pain she told me she had seen worse and take motrin for the pain lol

 

Pretty much sums up the experience of everyone I've seen whose gone to a urologist. And most of those who've gone to gynecologists. Sorry you had that.

The only understanding I personally have received has been from endocrinologists specializing in menopause.

Thank you so much I had not thought about that. Don't endocrinologists also handle thyroid problems? I have multinodular goiter also. I am seeing a ENT for that, had ultrasounds and biopsies and was supposed to have a six month re check in Sept but the ENT has now cancelled three of my appts. I am frankly amazed at the level of pain I am having with the VA and the sad level of ill informed doctors. I swear they treat me like I have a yeast infection, they don't seem to understand the constant pain that destroys your life. I can't even sit without discomfort. I'm awake at 2 am and I'm just plain angry

Donna why have they referred you to an ENT for a thyroid goitre? You should be seeing an endocrinologist.

Have your thyroid hormones been measured (they must have been) ? Please try to see a reproductive endocrinologist as the thyroid gland affects every other system in the body, including the ovaries etc. I'm sorry, I've forgotten your age, or maybe you haven't mentioned it. Have your estrogen and FSH (follicle stimulating hormone) measured as well (see one of my replies to Catherine). If you are symptomatic it might be because your blood estrogen level is less than 50-80. (Which is the ideal for menopausal age). And maybe use the Vagifem every other day for a while and then taper it off?

You also might want to check out the website I found useful, menopausematters dot co dot uk; there's are very useful threads on VA.

Best of luck!

And no, doctors don't understand at ALL.

The only ones who do are the ones specifically specialised in menopause.

A useful book is Elizabeth Vliet's "Screaming to be heard" The subtitle is something like Hormonal problems women have that doctors ignore.

She talks about bladder issues and cystitis symptoms etc which are basically VA.

Hi KKay

Is taking vagifem every day (even for a relatively short period) safe? I am at a loss with my GPs, not sure they even know about taking it more frequently; they seem to read off the leaflet in the box. One nurse implied I could ut patches on my arm, when the information clearly says not to. I feel quite worried about the quality of their advice.

Yes vagifem is safe daily for a short period. Its a very small dose and is not absorbed by the rest of the body. Then you can try every other day for a bit then go down to twice weekly

Google a doctor Studd - has a very informative website. If you dont have luck finding it, I'll check my links in the morning, let me know

Thanks for all the info. I'll check my chart I know I've had tons of bood work done. I don't have ovaries to worry about since I was 35.

And I have no idea whay I was sent to an ENT for my thyroid. I will ask for an appt to an endocrinologist

Hi

I had a really good day yesterday and felt so elated, not as good today but still OK. I got in touch with a nurse specialist from the women's health organisation and she told me that this erratic pattern of good and bad phases is typical of VA. She also talked about increasing the dose of vagifem so there are similarities in views on that. Also the use of patches or systemic hrt alongside to help.

I just felt reassured that progress can still be happening even on bad days.

Oh Catherine, thank you so much for relaying what the nurse said. That's so reassuring and helpful...

Did she specify how to increase the vagifem ? or just play it by ear? Alternate days? every day ? 

What organisation was this ?

I take systemic estrogen alongside the Vagifem; (I have lots of other menopausal symptoms when I stop.) The systemic estrogen I use is Estrogel; its a gel I put on my skin - usually on the inside of my arms - once a day.  Its the same chemical substance as the patch but a gel.  I had a few days that were better this week and one that was worse. 

Thanks again. I feel reassured. 

 

Catherine just wanted to add that I went into menopause in my early forties and had exactly the same symptoms as now, but no one recognised it for what it was. After a year and a half merry go round of different HRT s I finally found relief on Estrogel. I took it for ten years and was advised by my endocrinologist to switch to a non-estrogen HRT called Tibolone (Livial) which is safe even for breast cancer survivors. I thought I was Ok for about a year until VA hit. I've now reverted to Estrogel as I described above plus vagifem; its been 4 weeks now with the two of them together. 

Hi

It's the organisation called Womens Health Concern and you can get email advice from the specialist nurse. There is a small charge (about £10)  or donation for e-mail advice. You can also get telephone advice. She didn't specify the doseage; she told me that twice a week vagifem is a low dose and a specialist doctor wouldn't hesitate to increase that but that GPs are more cautious and so she advised me to see a specialist so I have asked my doc to refer me to one asap. You can respond to the first email and ask more questions so it might be worth you doing that; the cost is relatively small; £10 for email or £20 for telephone I think (I am in the UK).

It's very hard when we have good days and then it seems to come back but I really don't think that seems unusual with this; I am not medically trained but I sort of guess it must be to do with cells repairing. 

We need a really knowledgeable gynae or uro specialist, a woman who has got this who can offer their expertise and support to us all on here. Wonder if by chance such a woman is out there.

Also so hard is keeping positive in the midst of all this but we must I think or we will go under.

I havebeen on the Evorel conti patch for one month and the vagifem for four months (twice weekly but am going to increase that) and I can see some improvement but definitely not sorted yet. let's hope we soon see further improvement. I don't feel very christmassy!!

 

Good for you- well done! Thanks for sharing that; I feel even more reassured now about increasing Vagifem myself.

One explanation for the erratic recovery I read somewhere is that the nerves get all irritated or inflamed and it takes them a while to get sorted.

Make sure the specialist you see is well-versed in menopause and not just a regular gynecologist....

Good luck ! Share what you find out

Keep us posted with what you learn

Hi

Someyhing that has helped me a bit psychologically is this:-

I started with this on 16th Aug and struggled as you kno (still am) but around 15th Nov my husband had the idea of graphing the level of pain/discomfort. i was sceptical, distracted and disillusioned but since then I tracked it; rating each day in terms of pain from 1 to 10. Dividing up the day between, waking, morining, afternoon and evening. Whilst I have still had bad days and episodes, I have tried to be truthful and now, six or seven week later I can see a downward trend of discomfort...still there with some spikes but downwards. Not gone and a little up and down. When I look I can see the symptoms decreasing overall. When I look at the graph it gives me further hope and helps me carry on. Just a thought, wont help you now but as the weeks go by it does.

that is a great idea. Just being able to see progress. I know I've made progress because at first I simply sat in the recliner with an ice bag between my legs

 

For some reason I couldnt view this comment for several days but now I can - apologies for not responding sooner.

The graph is a brilliant idea. I was wondering how to chart my progress - or lack therof - and couldnt get my head around how to go about it...this is perfect

I'm glad you're discomfort is getting slowly better.

We are travelling over the holidays and I couldnt face dealing with the extreme pain so I've temporarily gone back to Premarin cream ( which is a synthetic estrogen that I dont really want to use long-term, estradiol is the form of estrogen that is safer and more natural) but premarin is stronger and my symptoms do improve on it.

Stay in touch.

Nice to hear from you, a belated Merry Xmas. The graph helps but serves to show (in my case anyway) how erratic this condition is. My graph has slowly gone downwards but I still have spikes. And not yet symptom free any day but less pain than say in Sept or Oct.

Do you find stress worsens this condition, additional stress of xmas, family etc. seems to have worsened my symptoms. Oh and being in a car or vehhicle that bumps seems to be uncomfortable too.I took pain killers on xmas day to 'get through' without making it hard on others.

I hope we can find a way through this over time. I am waiting for a urogynae appointment, haven't got it yet but hope to have one soon. How are you doing.

Belated Merry Xmas to you too.

I am so glad to hear your graph has slowly gone downwards. Really glad.

I am better on premarin but not quite right. And yes, stress definitely exacerbates it and sitting in a car is hell. I will go back to giving Vagifem a try once we're back home after the holidays. If that does not work over say 3 months I will try the local variant of the Mona Lisa laser procedure, where I live called Intimilase I believe.

Donna, how are you doing now ?