Why are my symtoms worse some days?

Hi

my symptoms are feeeling like I need to urinate all the time and stinging. Since I have been using the cream the symtoms have eased some days but then are worse the next day.

little Stinging pain only when you urinate? Maybe UTI?

Hi

I have had my urine tested for infection 3 times and my doctor said that there is no infection and said it was AV...just wondered if it's usual to have some bad days when on treatment before it gets better?

Some how I missed your post, did you say you only get stiny pain when u urinate only or at other times as well? 

Thanks Wendy......I think it is working, slowly. I have used the cream for 10 days now and things are slightly better. Appreciate your positive replies.

Hi Wendy

Just wondered if you can remember how your symtoms reduced after first going on the treatment? Did they just go or was it gradual? I know you said it took a while for you but guess I am just trying to make sense of it all and work out if my treatment is working at all?

I have been using Estriol now for 12 days and even recently the symptoms seem as bad as before Some days or part of a day I get excited when I feel some relief but then the symptoms come again.

Catherine

Hi Catherine

Yes the relief was very gradual.  I did the estrogen cream for 14 days...the discomfort lessened but didn't go away until some weeks after taking the Vagifem 10 mg 2x week.  It takes a while for our vaginal walls to heal. Are you inserting the estrogen cream with applicator or just on the outside?  I have appointment with my GYN doctor today.  Even though my vaginal area has been feeling normal I would like him to check how it looks and ask about if I still need to continue Vagifem ( I'm sure I will) and to make sure if it is safe to use.  Also to ask why my husband is not able to penetrate when trying to be intimate.  I would also get UTI a few days after intimacy when we were able.  I would have to take Macrobid before and after for couple days to prevent UTI.  I am 64 may I ask how old you are?

i will let you know what my doctor says later today.  Hang in there dear Catherine.  Try very hard to think positive and not stress okay.😊

take good care

Wendy

Catherine

If you are inserting the estrogen cream with applicator ......are you doing that at night?  Very important!

wendy

Hi wendy

Thanks again for your reply, I do appreciate it. I do insert the cream at night though at first wasn't able to get the applicator in very far. I am 53. I was told my cervix was 'angry' and red on examination 2 weeks ago and that's higher up. I must admit that I am very stressed; interfering so much with my life. How long ago di your troubles begin?

Hi Catherine

i was diagnosed with Atrophic Vaginitis (thinning of vaginal walls) a few years ago and was recommended that I use Vagifem......unfortunately as I was not experiencing any discomfort....I did not use the Vagifem so unfortunately the symptoms began with feeling like I had a UTI, although I had one at the time.  After UTI was gone I still felt like I had one only to find our that it was the AV that I was feeling.  I would say about 8 months ago.  I have been feeling normal for a several months now.......I was so afraid I was going to have to live with that discomfort so I was so relieved when I got better.  It just takes time to heal dear Catherine.....I know it's difficult right now but you will get better.  Has your doctor recommended the Vagifem....as that is very important to follow the estrogen cream. 

I am in the US.  Where are you?

wendy

Hi Wendy

I am afraid too, that this is it for good. Yes I have Vagifem to start in a day or two (have used the cream for 12 days so got a couple of days left on that. So glad to hear from someone who has got through this somehow. I am in England.

Thanks again Wendy, I am taking your advice and will let you know how things go.

All the best for now x

I just noticed in my notes that my primary care doctor had recommended Estriol.  Here in the US evidently you have to go to a compound pharmacy to get it.  I will ask my GYN doctor about it today.  I think it's more natural than the estrogen cream I was taking.

we live in VIrginia in the US.

take good care!

wendy

Hi Catherine

I went to doctor yesterday.  He said to continue on taking the Vagifem 2 X a week as it seems to be working keeping discomfort away he also is having me apply Estrace cream ( estradiol cream ) on the outside of vagina for 14 days then apply when I take the Vagifem after the 14 days to improve intimacy as it Has been a problem as mentioned.  He said upon examination I was lacking estrogen in that area..  I was also told that I will pretty much have to use Vagifem for the rest of my life 😟 Ugh!  Is Vagifem expensive in England?  It is here!

I hope you are feeling better!

take care

Wendy

Hi Wendy

Nice to hear from you again, I was thinking of you yesterday. Glad things are working for you. You know I think I would gladly use the vagifem forever to keep these horrible symptoms away! I think I would even join a monastry to keep them away!!

 In England we pay for each prescrption we are given, unless we are exempt for wahtever reason; such as on benefits, under age 16 years or similar. I am not so I pay £8.40 for each prescription. The other day I had a prescription for vagifem and it was for 24 tablets and cost that amount. I don't know how much that is in dollars, sorry.

I think I can detect a gradual improvement in my symptoms but still have the feeling of needing to pass urine but possibly not so fiercely as before. I am keeping my fingers crossed though I find the paychological challenge of keeping optiistic is hardest.

By for now, I will let you know how it goes for me...any tips on keeping positive?

Catherine and Wendy , Wendy has given me hope as I am in so much pain and my doctor is confusing. Weds they told me I did not have a UTI it was AV and to stop antibiotics then today I get a message on my online chart that says my culture came back positive for Ecoli and continue taking it ! I am in so much burning pain this morning all I feel is panic. I started the estrace last night. I've been through a lot of things with my health but this is the worst.

I did not know you could use the estrace externally, did it help?

Hi Donna

Wendy is also helping me stay positive. I saw your comments on here and considered replying then but felt, like me, you probably needed someone like Wendy to help you, as well as the other ladies who have come out the other end of this to some degree. I myself am in a bit of a panic so yesterday I thought I would wait on before replying to you.

I have always been fairly healthy and haven't had any gyny probs prior to 16th Aug this year when I got what i thought was a uti and took 2 lots of anti biotics over 2 weeks even though no infection showed up through dip test or culture. Then on 1st Sept my GP did an internal exam and told me it might be..this thing called AV which I had never heard of. I am 53 years old. I used estriol cream for 14 days (up to 14th Sept) and am now on the twice a week Vagifem, so have done a week of that so far...so have had this since 16th Aug really, on treatment since 1st.

I would say my symptoms are a bit better but not gone yet, I have picked people's brains for tips and stopped having baths, no perfumed soap, no alcohol, no caffine, no thight clothes etc. I am not out of the woods and am having an ultrasound on my bladdeder and pelvis on Thurday.

For me the psychological battle is the hardest, hopin and praying for relief, wondering if it will ease or go, thinking how I am affecting my family etc.

I think if I ever get through this I would try to help others as you say it is truly awful.

 

Donna, i'm having lots of your symptoms keep us posted on your results for the test you are getting Thursady! I have another appointment Oct 3

Hi Donna

i haven't read Catherine's message to you yet...wanted to get back to you fast. Ask your doctor for prescription called PHENAZOPYRIDINE 200mg...it is for pain when we have UTI.  If you cannot reach doctor over weekend...ask a pharmacist at drug store for over the counter pain relief for UTI.   You poor thing....you should not have to go through such pain. Sometimes urine is negative then when they send it out it comes back positive. The medication is wonderful to have when we have to deal with our UTI' s.....get some and keep on hand......

best,

Wendy

Hi Donna

i hope you got my message.  The medication PHENAZOPYRIDINE takes away that horrible burning especially when you pee.  Most times you may only need it for a couple of days unless it was a really bad UTI.  1 tablet every 8 hours hours.

wendy

Hi Donna

Just got back from the store.  The over the counter pain med is AZO Urinary Pain Relief.

wendy

Hi Donna

how are you doing?  We have not heard back from you.  Hopefully you are feeling much better.  Please keep us posted.

take care

wendy

I know exactly what you mean Catherine and it's about to drive me crazy. I'm on day 5 of the cream and yesterday I didn't take anything for pain. I was so happy all day thinking I could see an end to this awful burning pain. Then last night I was awake all night hurting as bad as I did two weeks ago. I have an appt tomorrow with a urogyn.  I'm so scared it will always be this way . Did your doctor do a urine culture ? All my tests they do in the office come back neg but the cultures always come back E Coli infection. I sat on the side of my bed this morning and cried it's so bad again

Hi Wendy I am an artist and have my first show of the season this weekend  so I tried to work the last couple of days but I'm back miserable. I have the PHENAZOPYRIDINE  , I've always kept it on hand but it is not touching this pain. They gave me Norco which I'm trying not to take. I have an appt with urogyn tomorrow but I'm losing hope

Thanks. I think seeing no end in sight is the hardest thing. Thinking this pain is here to stay. And not understanding why something this severe is not fatal. I never heard of this before. Sept 15th was when it all started seems longer