I honestly don't know how to survive this right now

It came on acutely last Thursday all of a sudden I was burning and feeling like the worst uti or yeast I'd ever had. But I had been fighting with chronic uti's and yeast for more than a year. Like you though I knew something was different. After the meds for those didn't work I had to ask for a pelvic exam.

Was the steriod oral predisone? I have an 8 day prescription of that to pick up

donna, is all the examening and prescribing being done by a GP? These problems sound too specific and extreme to me for a GP to handle. Are you in the US or UK? Sounds like women in the UK have to wait much longer to see specialists.

Stress will also make symptoms worse. If you can get a mild tranquilzer or anti-depressant might help you get through your show. At one point it was suggested to me (when what I had was an infection). I was so determined not to mask what I KNEW had to be an infection I didn't take them, but might help you temporarily. 

I think someone named nancy-o had symptoms very similar to yours. I could have the names mixed up. Look through other threads re this problem. She ended up having the Mona Lisa laser treatment.

You will find help here as so many women have problems with varying symptoms and ways to alleviate them.

I'm in the US. Yes everything by a gp. I'm in so much pain today. I'm not sure if I can take it. I asked about a referral to a specialist and she told me they would do the same treatment. It would be a couple of weeks to get in and I could have two weeks of the estradiol done. But I'm too severe not to have a specialist

Indeed Beverly in the UK you can wait up to 18 weeks to see a specialist- although many people wait much longer, then another wait for any tests you might need and then another wait to see specialist again. Not always a choice about which specialist you see either but it is all free at the point of use. I have had these issues and am on Ovestin twice a week and in between I use tea tree oil. It's a horrible thing to have and really felt I was on my own with it till I found this forum - discovered when I had a hip replacement last year.

Hi Donna 

I'm so sorry you are going through such pain! I am in the US, Virginia and have AV as well.  I'm 64 and I see my GYN for this.  I found out that I had AV years ago and because I wasn't having any symptoms at the time I didn't take the meds as my doctor suggested. Well this past year after having a few UTI's ( that was the beginning ) after finishing taking the antibiotic for UTI the discomfort didn't go away and thought I still had UTI but urine culture came back negative....so went back to my GYN and he said discomfort was due to AV.  Ugh!! He put me on 14 days of estrogen cream (internally) then after that started me on Vagifem 2x a week.  It took a few weeks but slowly started to feel better until I finally felt normal again.  This past appointment he told me that I will have to be taking the Vagifem for the rest of my life.  I started drinking a lot of water and emptying my bladder more to flush my system to fight off UTI's.  I take a good probiotic....cut back on caffeine. Sometimes I feel a tiny discomfort but for the most part I can live a normal life and not feel that horrible discomfort.  Very important for all woman to see a GYN doctor...best to see a specialist. Unless you have a great GP that knows about this issue.  Donna I believe in cancellations.  If  I can't get appointment sooner I keep calling back and ask for any cancellations.  I have been pretty successful. With our insurance, now we can go directly to specialist without referral.

i just wish there was something more natural for us all to use....than would keep discomfort away and would heal vaginal area! I never heard of AV before this!

as I've said to a friend of mine on here....hang in there!  It's hard in the beginning but does get better as it heals.

Wendy

Wendy your lucky you can take the vagifem, as i mentioned previously after a few months of using this i started to bleed again after several years with no periods, so was told i had to stop using them and never given anything else instead, just left to get on with it, plus i have a slight prolapse as well, only to be expected after having five kids and surgery for a dropped womb when i was only 24.

Sue 

Oh my goodness Sue.....5 kids!!  Bless your heart!!

How much Vagifem were you taking and how often? My doctor said it use to come in 25mg but now it's 10mg.  Were you taking same amount as me? Were you seeing a GYN.....cannot believe your doctor is not recommending something else to help you!  I hope that there will be more research done and help with this horrible disease!  There are so many out there suffering.....I never knew about it until it happened to me.

wendy

I should have asked how much Vagifem were you "inserting". Instead of taking.

Wendy i cant remember  now, i wonder if it was 25mg i was on.  Will have to go back and find out. 

I do think all our comments should be in a book called womens curse and all men should read it. I wonder how many men would be eager if their manhood bits felt like it was on fire and a thistle stuck in there!  Sorry but this is the way i feel at the moment, rather annoyed and fed up. 

No, it was a steroid cream...but I don't think it helped...the more and more I used it, the more irritated it got. I stopped using everything and week by week it slowly got better. Right now it feels like it's almost gone, but it is still there, especially after I take a shower in the morning, after washing the area it starts to feel inflamed, but quickly subsides. I bought a special seat so that I can sit at work all day without pain. I don't know why this all started, but at this point it feels more neurological, I'm wondering if it's something to do with my spine. I have a high deductible insurance and am way past the amount right now, so they pay 80 percent. I'm going to make every appt with every specialist before the new year to find out what's going on because I am so afraid of it happening again.

I was just wondering.....maybe if you were taking 25 mg of Vagifem 2x week...it could have been too strong causing the bleeding.....just a thought.

Wendy

wendy, when you say you are sorry you didn't take the "meds" earlier, do you mean hormones? I haven't used any because my sister had breast cancer and I'd rather not take that chance. I've probably had AV for well over 10 years and so far I have not had serious issues. Have been warned by others (and my GYN) that it can escalate, but I'd rather take the gamble than have to use hormone creams forever.

Am banking on the Mona Lisa for slavation if that happens.

Hi Beverly

The medication I meant was the Vagifem to help the vaginal walls....I let it go too long (years ) and that area got worse causing much discomfort...so when I started on the Vagifem it took awhile to feel normal again. My sister had breast cancer as well so it was a concern and discussed with my GYN.  So I did the short term estrogen cream 14 days and said the Vagifem stays in that area and I would be okay.  I also get checked regularly.

Wendy

Wendy you have no idea how much hope you gave me this morning. I am going to ask be referred to a gyn. My GP actually prescribed hydrocodone yesterday I am in so much pain. But I can't live my life doped up. So depressing. I am waiting for the estrogen creme to come in, I can't believe they have to order it and I know it is not an overnight cure. I hope it will be there today.

I had never heard of Av either. I had a hysterectomy over 30 years ago. And I have not had a pelvic in 20 years so I take the blame for this. I think I did what a lot of women do, take care of everyone else except yourself. I did have yearly physicals but my GP acted like I didn't need one. So now I just want to deal with this. I finally slept last night with the pain meds, well until about 3:30 am. 

Anyway you gave me hope this morning and I really thank you and every single one of you. I really was so upset when I found this group. It so helps.

I have an appt with a urologist and will add the gyn today. I also got the vit E . This is nothing to fool around with. The pain and constant burning is unreal. I told my husband last week to put his hand on a burner and just imagine the initial pain of the burn just never lets up.

I understand being afraid when the pain pill gave me about 75% relief my first thought was I'll get addicted because the pain returning is more than I can mentally handle. It's only 8 days of the meds though so I truly am scared. I think it will take longer for the estrogen creme to make a difference. 

Where did you get the pillow I can't stand to sit for more than a few minutes

The difference for me was acute, one day a bit dry and uncomfortable sex to my insides being set on fire. If I had known I would have taken any HRT they wanted me to take. My husband and I talked to our nephew who a specialist in Knoxville, he is a gyn oncologist that specializes in female cancers and he said see a specialist and take the HRT. It's important. So I'm taking his advice. He did say that mine is an extreme case. 

LOL last Sunday my husband wanted to fool around !! I told him this just proves you just don't get it. Now I've been married to him for 40 years this coming May and he is an amazing human being. Everyone loves him. impossible not to. But he finally understood yesterday when I cried non stop until I got some relief finally with the pain meds. And the funny thing is I did not think the hydrocodone would stop this pain but it did for the most part.

 What I think is awful is how the doctors just think you should power through the pain for weeks and months waiting for treatment to work

Donna

i just wrote you a very long reply to you and now it is lost!! ...it said due to error they have to reload...gone.....ugh.  This has happened before...so disappointing!

wendy

oh no !!!

I looked up the vagifem it looks a lot easier than the creme. Did you have any side effects from it? I picked up the estridiol creme today. I didn't even read the attached side effects, it doesn't matter at this point if it works I'm happy. I's the same as your 2g daily for 14 days and then twice a week after that. but I think I will ask about the vagifem at my gyn appt. Do you need to wear a  pantiliner with the vagifem?

donna, if you were able to have sex until now it must have come on VERY quickly. I can't tolerate a pelvic exam; sex would kill me. But in my case I have very few other symptoms other than mild burning. It does feel like I am taking a chance, but using hormones is also taking a chance. Right now I don't have symptoms like yours. Used to see the GYN every year, but have stopped the last 2 years. As I understand it once you start the cream you have to keep using it.

Maybe once you get the pain under control you can look into the Mona Lisa laser treatment. I would rather do that (if I was accepted as a patient) rather than use hormones. I have a possible relationship looming on the sidelines and if that develops I'll have to do something, I suppose.

I've had trouble for about a year and a half but yes it went from iritating to on fire overnight. And the pelvic was very painful. I am worried about the creme but I hurt so bad and there is nothing else to do. I can't live this way

Definitely try it! I just meant as a long term medication for myself. If I were in your situation I would try anything and everything. I spent 5 years in utter discomfort when I had the infection that was not properly diagnosed or treated. I was taking every anti-biotic and using every cream possible...including Premarin. Hope what you have been prescribed starts working fast.

It doesn't seem to help that there are a lot of women doctors now. I don't notice that knowledge & treatment of this issue has improved.