Flare up of AV

Thanks, Linda.

Thanks Yolanda.

I am the same Yolanda and am fed up of it.  Am sure with me it's what I wash with that affects all these things and I take probiotics by mouth and they have helped. I am trying the YES VM but only lower down not chancing it further up think it's ok as a moisturiser lower down but I suffered badly with it in an applicator. Some people are saying they have been like this three and five years my doctor did say I would have to take the estriol once a week all my life.  Hope my memory stays good just imagine what we would be like if we forgot. 

Let me know too if you find something wonderful 

olive, I put a capital E on the days of the week I am to use it and circle the E the next morning. Not taking any chances counting on my memory.

Hi Olive funnily enough I had similar thought this morning What if you get dementia or similar and nobody knows or cares to treat you.  Imagine there must be women in this awful situation.

Just had the thought a couple of days ago that there must be old women in nursing homes that are suffering and no doctor would be checking them for it. And so many sitting all day in wheelchairs! Guess we'll have to go with a list of problems and medications pinned to our chests.

It's difficult enough now when we have all our faculties. Been waiting for a call from my gyn since her return from vacation Tuesday. Nurse assured me I would be contacted. Don't want to harass them, but as she never left the prescription she promised  and as I had a bad reaction to the steroid and stopped using it I'm kind of left in limbo.

Thanks, Olive.

were you afraid to use creme i just got script and side effects awful so scared to use but doc says creme is safe???

*luvena

Thanks, Pat.  I may try Emuaid.

Hi Pat look up Emuaid, might be a good try also wondering why Drs and Dermatologist don't give a thought to anything like this,. Was told to use Acquafor which did nothing for me . My Gyno said use only what he gave me for now but gonna ask him about this next week , just don't want to risk getting worse. Please report back and let us know if it's working for you and hopefully it is

Meant to say looked up

pat, did you pay $50 for 2 oz of this cream? That sounds pretty steep for an over the counter cream. Please continue to post on the results.  Noticed there is a less expensive version from Walmart. Blue Emu was $30. Was the cream recommended by someone or did you just decide to try it?

Thanks.

Hi Beverly 

Well here’s my Emuaid story. I’m on a very limited income. So I wrote to the company via email and asked for samples and/or discount code. They sent me an application for what they called EmuAssist - so I filled it out and mailed it in (income type questions) and they called me. Offered me their program which I qualified for - up to two at $20 with free shipping! I said yes please! Only ordered 1 (regular Emuaid). They asked where I had purchased it before so I just said Amazon LOL (caught me off guard). So it’s a program for people who are lower income I think.

It was recommended gals in another group for Lichen Sclerosus (I have AV & possibly LS as well). 

It’s day 2 and it’s still helping a lot. I’ll keep you all posted. 

Hi Pat, 

I have been researching Emuaid for  a few weeks now but have not ordered yet. Are you still having positive results? 

Hi Julie, 

You have me confused with another Pat.  On this site my name is Patricia.  I read her story and it sound interesting, but I hesitate to try yet another cream bc EVERY CREAM I have tried brings disastrous results.  I'm the gal who just got pellets injected into hip this past Thursday.  Both estradial and testosterone were put in and I'm taking a progesterone pill at night.  Sadly, there is no difference yet.  I've read some people see results anywhere from 12 to 48 hours, but nothing yet for me.  In fact I had a terrible night.  Most people start to see improvement in one to two weeks.  I'm hoping.  I'd like to get on that LS site as this is another problem I have.  But my biggest problems are AV, Vulvodynia and terrible urinary frequency.... that's enough! 

Patricia 

That is so strange....from my end it says I messaged Pat0423 not Patricia65486.  The other Pat was commenting on her experience with Emuaid.  I am sorry to read you are not feeling better yet. But I have heard it takes time for the vaginal  tissues to heal. Don’t give up! I have to believe there is relief for all of us. 

patricia, I tried posting something a short while ago, but the moderator blocked it. Have no idea why. I mentioned a cream that has been mentioned many times before.

I'm wondering if you have been diagnosed with LS if you are using anything for that? I was using a steroid cream (ointment really) nightly, but suddenly had a severe reaction to it. My gyn is on vacation so I have stopped using it till she returns. I am continuing to use the estradiol twice a week, but I notice that causes a slight burning reaction. I had been using it nightly, but the burn started so went to twice a week.

Have tried the baking soda rinse in an attempt to get my PH balanced as I seem to have a phantom infection. Doc detects nothing, but symptoms come & go. Hard to keep track. Are you using the baking soda?

Yes Julie I’ve been using it every day (every bathroom visit) and it’s the only thing helping my pain. Internally I use plain emu oil and sometimes a Carlson vit e suppository or luvena moisturizer (pre-filled applicators).  I can’t use hormone creams so I try to keep up with moisturizers as best I can. 

The Emuaid is soothing just like regular emu oil but I’ve found it to be less messy and helps more. 

Hi Patricia (from the other pat haha)

I too have LS and urinary pain/issues just started in. I just got some cranberry pills...ugh!

I wanted to mention I’ve started sitz baths with a tiny bit of borax (& a little baking soda too)- so many other women have found relief from it. I had to use less because I’m ultra sensitive but I’m keeping at it. They say 2x/day but I’m doing one soak per day and followed by Emuaid. Fingers crossed.  Hope you start feeling better. 

I do sitz baths also, but just plain water.  I'll at least try the baking soda with it.  Thank you. 

Yes, I do use a steroid ointment.  It helps but it's strong, so I need to use it sparingly.  Directions say twice daily, but I need to be careful with it. 

Julie don't know if I am coming or going. Last night was horrendous on my first bathroom trip and after I returned to bed I had this really horrible sort of strong tingling it came and went like spasms I couldn't sleep it was annoying.  It didn't go only felt better in the shower. This morning I used my son's cavalon don't know if there is a miraculous remedy in the making probably not.  My son as I told you has MS and has bladder and bowel incontinence so he also has sorbiderm will try it too. I would try anything you know that.  I did exercises this morning too because after a morning of standing constantly, puréeing  food for our son, he can't swallow whole food either, doing the washing and making our dinner I feel my inside is falling out along with everything else. What a state I am in. I don't have a prolapse had a pelvic floor repair so told it's ok.  Now having a seat for five minutes and never stop yawning. Of course that's nothing compared to this vaginal/urinary thing.  Have you heard of these spasm feelings. 

How are you 

I know that feeling sadly. I call it pulsating. Has kept me awake all night. I also have Lichen Sclerosus so I figured it was that, then other gals from that forum have said they’ve experienced the same thing. It used to accompany fusing but now it’s almost all the time. Very unsettling, like what is happening down there for that to be going on??

I’m not sure if it’s same thing for you but I sure hope it eases up. You must be exhausted!!

Hi Olive,

I thought I was improving until last night. I have no idea what was happening with my bladder but I was up all night long last night. It wasn’t the usual urgency/bladder pain.  It was this constant pressure feeling that would not stop and I still have it this morning.  I even tried to sleep sitting upright. I have been trying to stay active the past week and live my life after 4 torturous months of doing nothing but I think I have been pushing it.  I too have noticed that standing for too long worsens my symptoms.  This new symptom is horrible. Hope it eases up today. 

What's the name of the steroid cream you use. Is it clotramazole or anything in that line because ages ago when this started I used clotramazole and it helped that was before all this vaginal/urinary/pain etc started.  I use estriol cream once a week for the rest of my life I am told. It has definitely helped but not properly. 

Fed up of all this 

Julie do you ever feel dry, your mouth dry especially, worse  in the morning but can during day too.  Am sure I read somewhere to keep ourselves hydrated because it helped with the dryness we experience. Drink any more than I do would only exasperate the situation we are in about getting up in the night facing the steady pain and spasms we do. We can't win 

Yes. I have dry mouth and eyes for that matter. And I never want to drink at night because that worsens everything and I up enough as it is. I have had dry eyes for years now (since menopause) but the dry mouth started with all of this craziness 4 months ago. Add it to the list of issues I guess. 😑 

Someone posted a question about this syndrome about a week ago. 

"Sjogren's (SHOW-grins) syndrome is a disorder of your immune system identified by its two most common symptoms — dry eyes and a dry mouth. The condition often accompanies other immune system disorders, such as rheumatoid arthritis and lupus."

Has your doctor mentioned it?

No and not going to ask him but don't think I have anything like that I do t have rheumatoid arthritis but have hypothyroidism. I don't think my eyes are dry just my mouth worse in the morning when my tongue can be as dry as stone so dry if I don't watch my thyroxine falls out for not the floor and I have to scramble about on my knees to find it at 5.30am when we get up. I do take amitriptyline 25mg and they are known for causing a dry mouth but this worse dryness started with vaginal atrophy. I will read the other posts though. 

 Don't read Sjögren's syndrome because like me you will have lots of the same symptoms vaginal dryness is one of them.  We have enough sorting out this atrophy or whatever. 

Hi Julie, 

I'm curious to know more about your urgency issues, I suffer as well.  Did you go to a urologist? Ever have a cysto? Have they ever told you about possibly having interstitial cystitis? 

I've been told that bladder instillations will help me.  I'm waiting to see if the hormone pellets will help the bladder.  Dr was somewhat helpful.  Presently, I've gone to four different Drs to solve this journey of living with chronic pain.  I live in Chicago.

Patricia 

I've had terrible urology problems with a feeling of UTI all the time and getting spasms during the night. I was up at least five times every night and sm still up three times. I take estriol cream and it's slowly working. I use the estriol once a week now and every time I use it, the night and day after get the feeling of bladder discomfort and urgency but next day is a lot better. I am busy trying out moisturisers to use at the same time or round about the same time as the estriol cream. My symptoms came back recently because I used baby bath in the water to wash with so don't use anything except water now. I think what we use to wash with plays a big part in how we feel in that area. 

What did your doctor recommend. 

Yes to all of the above. I have a urologist and I had the cystoscopy but the bladder looked fine. Nevertheless, my UTI symptoms are consistent with IC. I have been on the IC diet for 4 months with no improvement at all. In fact, I have just lost far too much weight. But I am too nervous to resume my regular diet as I don’t want my symptoms to worsen. The confusion in getting a definitive diagnosis comes from not really knowing if this is true IC or menopausal related symptoms from lack of estrogen. 

Have you still not seen any improvement from the hormones?   We have family in Chicago.  Been there many times. Such a great City. 

Forgot to mention that I am now applying my compounded estriol cream to my inner thighs nightly because I cannot seem to put anything but coconut oil on the vulva area and even that is burning me if i use it internally now. It’s as if the vaginal tissues are worsening daily which means the urinary symptoms are too. I am so desperate for relief of any kind I will try anything at this point. I suspect I am going to be asking about the HRT patch soon if I cannot get this under control.  

julie, did your doctor suggest putting it on your thighs as an alternative? 

I have gone from nightly to twice weekly because of burning, but wonder if that means I am not getting the benefit of hormones nightly that I need or that my body doesn't want it.

Same with the steroid cream which I stopped using altogether as I started burning up and turned flaming red. So I've gone from every night to none at all. Have not been able to discuss either with the gyn; only the nurse who tells me I will hear from the doc or office. Here it is Friday so this means not until next week.

Fortunately I have no urinary symptoms and hope I can avoid developing any by using the estradiol. Am getting pretty paranoid re what may develop. 

Yes but only temporarily. Actually, she told me to put it higher up, in the crease of the groin between the leg and pubic area which I just started doing last night. She said the absorption will be minimal so the closer to the vaginal area I get the better at least until we figure out what I am going to do. 

Julie, 

You and I  have so many of the same nasty symptoms.  I have tried the IC diet, but not as diligent as you, but I never feel any foods are triggers.  No, the pellet hormone therapy has not helped yet.  It's only been one week, it can take up to  five weeks.  So I have to be patient, ugh!  The constant urination I experience at night is truly exhausting.  I average getting up about eight times, but if I start to spasm, sleep becomes impossible.  My output of urine is slight, more than UTI symptoms, but not a normal amount, but the painful pressure it creates  wakes me up out of a deep sleep.  Some people tell me to try to ignore the urge, but it is so deeply nerve related, I have to expel the urine or I'd go crazy. Such horrible symptoms! And then I'm told my bladder looks ok... ugh!  Trying to hang in there! 

Patricia 

Patricia 

You know that's exactly the same bladder symptoms I have. I waken from deep sleep and no way could I sleep through it the bad really bad tingling feeling in my bladder is just awful. Then I go to toilet and only small amount comes out. It relieves it for a moment then I get the spasm feelings sometimes really bad and I can't sleep through them either. I have a small tube of diprobase cream I used this morning it's for dry skin conditions etc and haven't had adverse reaction yet but that's nothing new they wait until I am in bed or doing something until they irritate me so much I feel like giving up. The only thing I feel helps me is the estriol cream and not washing with anything other than water. I am not happy using estriol cream - my doctor says it has advantages and would be lucky to find anything of it in my blood I just don't know I read all the posts in the hope of one of you finding a real lasting cure 

hope every one of you has a relatively good symptomless day - this is Scotland 7.52am