Newly Diagnosed with AV - Issues with Replens

I thimk im at start of all this.  Started 3  months ago with utis, no blood,no discharge, no pain -which had five lots of antibiotics for e coli.  Last urine culture clear but i am left with urinary frequency especially all night, up to eight times.  Tried vagufem but seemed to keep me awake.  No help for bladder.  Daytime bladder is irritable feeling but can go for two hours or so without voiding but not at night.  Whats going on?  All dr has said is see urologist and he wants to do a rigid cystoscopy which im scared about as everyone says it will make me bleed and urination will be sore.  I have asked first for ultrasound but he says it wont show much.  Is this kidney problem or bladder problem?  Can anyone help, my sleep is so disturbed and i am waking in night feeling hot inside but no external temp? Whats is that?  Also dr said my CRP level is up.  Something is not right i feel just ill.

Hi Patricia, 

I just cannot believe not one doctor told me to stop the Replens. It has definitely worsened all of symptoms. Clearly, I’m not the only person with this reaction. So frustrating.  Seeing a naturopath tomorrow. I’m ready to try estrogen but my tissues are so damaged right now from the replens I need wait it out. Easier said than done. I would love to try coconut oil as I use it everywhere else but I have read that it can do more harm than good. I just replied to someone else about  Gynatrof. I haven’t used it yet but will try as soon as things heal a little.  

Ultrasound does not show the tissues inside the bladder. I had the cystoscopy. Not a pleasant experience but the discomfort doesn’t last long and it did give me peace of mind to know my bladder was fine.  I also just had a CT Scan of kidneys as I do have blood in my urine and kidney pain. If you don’t have either of those, hopefully your kidneys are fine.  

Ur telling me. This VA is the most awful thing ever experienced. I need help too I think estriol would help you a bit if you gave it long enough to work. I have tried vaginal moisturisers and they only made things worse again. As for coconut oil or cream or anything to do with coconut I wouldn't even consider. I once used coconut oil on my hair before I went to bed and at 3am had to get up and shower - my head and neck swelled up and the side of my face was bright red so goodness knows what it would do to me as a vaginal moisturiser I wouldn't even try it. 

Olive, 

It definitely sounds like you are allergic to coconut oil. I know I am not because I use it as a make up remover and a moisturizer with no issues and I cook with it too. But I am still reluctant to try it internally.  

olive, did the estriol burn you at all? I have been using estradiol cream and that has started to burn after a month's usage.

Re the coconut, clearly you have an allergy to it. I have no negative effects at all, but I certainly can appreciate every body is different. Do you ever eat coconut?

No I can't say it did but saying that sometimes if I had a shower before bed then used the estriol cream it didn't feel good once or twice. It's certainly nothing like the burning, stinging, stabbing in my bladder area I had I was nearly frantic with worrying about what was wrong with me.  I only said to my doctor that I felt as though I had a constant feeling of having a UTI and he told me I needed the estriol cream. He told me it was perfectly safe and he didn't expect me to have any adverse effects at all. He said even if he did all the tests he would struggle to find any absorbed into my bloodstream. He told me when I got down to once a week I would need it once a week for evermore. I decided myself to halve the amount twice a week and I think it is helping me. It's such a terrible feeling and could never say definitely helping because use one wrong thing and it starts all over again. I didn't think it was possible to get anything like this 

hope you fibs tbe right medication for you 

keep going - we have no other option 

He wants to do cystoscopy with general anaesthetic which i think is more invasive.  I have slight pain in back but no bleeding ,   I would like ct scan as my CRP levels are up but he wont do it till last.

I was awake for mine and could watch the scope go in and could see the inside of my bladder. The procedure lasted about 5 minutes if that. I have heard that they give you a general if they want to scope up to the kidneys. Mine only went to the bladder.  And my urologist would not do the CT scan until after the scope either. 

Hi Patricia,

Please let me know how you make out with the  estrace and Vaseline combination. It is so difficult to find something that eases the pain but doesn’t irritate the tissues.  My fingers are crossed for you. 

Hi Ann,

How are you feeling? Hopefully your CRP levels have come down. It is awful to be in such pain and sick at the same time. Are you on or have you tried any medications yet for bladder control? 

Are you still using the hormone pessaries? I am going to try the apple cider vinegar today. Thanks. 

This sounds stupid but will you drink the apple cider vinegar you never know with this awful condition 

Not stupid at all because it is used both ways. I am going to drink it because my UTI symptoms can be worse than my VA symptoms some days and today is one of those days. 😞

No, I only had those for 5 weeks (3 a week) so they could do a smear. The cream and steroid I use externally - given up thinking I'll ever have sex again ....

Your UTI symptoms do they sting and burn before and after you use the toilet. Are the symptoms not really making you ill like a proper UTI - that's what I found. I was about frantic with the burning and stinging but confused I didn't have the usual UTI symptoms.  It was then when I couldn't stand it I talked to my doctor and got estriol cream. I have to say the estriol is helping but it isn't right. I still feel at times I am sitting on sandpaper.  I also think I drink more than I put out.  Probably got water retention now. 

do you rub any cream into the front and side areas 

wish it would go 

My UTI symptoms never leave.  I have constant urethra burning (not affected by going to the washroom at all), bladder spasms, lower abdominal tenderness/swelling and the need to wee around the clock. I’m up every hour at night but very little comes out. Ice packs and Advil are my best friends right now. My urine has been tested several times and I have had 3 positive for bacteria.  I am on the cystitis diet but it hasn’t helped one bit.  I think it just caused me to lose too much weight.  I was told the cream should be used on the urethra too (so internal and external parts).  I started the cream last night and I believe it’s going to take a few weeks to see any results. Have you tried the cystitis diet?

No I haven't must be about the only thing I haven't tried 

your symptoms are the same as mine 

my urine smells like rotten eggs as going to get test done

i am up about three times minimum during night and up for the day about 5am so fed up of this 

I can relate. Having a very rough day....back to the doctor. Another UTI. So much pain. And severe burning today (everywhere). Feels like the estriol is making things worse but I just don’t know.  Feeling exhausted.  Seems like my life changed overnight and there isn’t a damn thing I can do about it.  😔

Hi Julie, 

I know of your frustration.  It leaves you feeling totally exhausted.  I'm up at night a minimum of eight times; no matter what diet I follow.  My car rides that exceed over an hour lead to total discomfort that lasts until the next day.  I'm presently waiting for an appt with a new urologist.  Can't be soon enough!

Olive,

I have discontinued all of my creams and feel a lot better.  I get burning when I "dab" with toilet paper.  I think the urine is what irritates me because I don't dry it all, but if I do dry well,  I get burning from using the toilet paper. Also, I go a lot of times a day which makes it worse.   I am picking up my compound next week and I hope it doesn't burn like estrace.  If it does, I will be back to where I started.

When I had vulvodynia, after urinating, I would dab very gently with toilet paper wettend with cold water. The water should take away most of the urine. Also, normal toilet paper contains bleach and other chemical nasties from the process of making wood into toilet paper. I used, and still use, a chemical and bleach free toilet paper made from sugar cane or one made from bamboo. Actually the toilet paper stopped being available so I now use the tissues. I forget where you all are. You can get such tissues on the internet or Waitrose seek it in the U.K. (Papura tissues). After urinating I always apply coconut oil to sooth and cleanse.

If your burning is external, it might be worth considering it may be due to Vulvodynia, which can get confused with VA.

Saw my urologist earlier this week and he prescribed Mirabegron. It is for incontenance (which I don’t have) but he said it helps with the urgency. I then went to my family doctor and she told me not to bother taking this medication as it doesn’t work well. She wants me to take Cymbalta. It is an anti-depressant but she claims it helps with the UTI pain.  It’s all so overwhelming. 

I was keeping a spray bottle with water next to the toilet.  I would wet the toilet paper to blot and it would burn like heck. I think the water brought out the bleach or whatever else was in the toilet paper.  I'm in the US.  Can you or anyone give me advice on a brand of toilet paper such as one made from sugar cane or bamboo and is it available at a store in the US? 

Lorrie,

I am in Canada and we have a brand here called caboo. It is made from bamboo and sugarcane. Contact your local organic/health food store. I am sure they carry something similar. 

Hi Lorrie,  I'm in the US and found an allergen free toilet paper at a big chain pharmacy store three letter logo .  But it's super thin. My dr also prescribed cymbalta and I also take gabapentin to calm nerves down.  The added cymbalta 20 mg has helped a little bit.

Any side effects with the cymbalta?  I have just been prescribed that as well. 

Thanks, I will check this out at a health food store.

Does the name of the pharmacy begin with a "C:?  I can't take Cymbalta due to heart arrhythmias and my dr. has never suggested gabapentin.  I will inquire.  Thanks.

Patricia, could you please tell me the brand name of this toilet paper?  Thanks, again.

The directions for taking cymbalta was 20mg for first week in Morning then second week another 20 mg at night. I couldn't handle the second  dose as it kept me awake all night.  No side effects from am dosage.  But I'm going to contact Dr to see if I can take both in Morning.  I think it's helping a little to calm nerves 

I don't know specific brand name. Bought it at the chain that begins with C. Going to get more today. I'll let you know.

Patricia, 

I would appreciate you letting me know.  I looked online and the C store had two brands:

Seventh Generation and Earth Essentials (or something like that)  I just used toilet paper in a restaurant and burned on fire all the way home.

Thanks,

Lorrie

Thank you Patricia. At least something is helping you a little. 

I had urgency - is that when you fell to need to urinate then suddenly it starts coming? That has been vastly reduced by the estriol and pelvic floor exercises.

Yes. That is urgency. But for me and many others, it’s much more than just the urgency. I have had many infections requiring antibiotics. I have urethra burning and spasms (almost constantly), bladder spasms and pelvic pain. And that is all in addition to the VA issues. 

Patricia, Are you talking about CVS or COSTCO?

Ouch. Sound like you need HRT. Did you say you reacted to estriol cream, or was that someone else?

Yes, that was me unfortunately.  But the problem is that it is in a base of some kind because it is compounded here. So who know what it is exactly I am reacting to. Not that it matters but The cream smells like black licorice (which I really dislike) so it is all I can smell. I would still use it though if it helped.  I would really like to try the estriol but I have no idea now what caused the problem. 

I reacted badly to every product I tried except ovestin (estriol) cream (thank goodness) and natural oils. I have no idea what I was reacting to either.

julie when I started with the estriol it felt bad. I felt a horrible stinging feeling all the time - all day and worse all night - I didn't think it was going to help me at all.. that must have been at least six weeks after I started it I know it was when I was down to once a week. It was then I spoke to my doctor and said it was still very uncomfortable so he told me to use two a week. I did two for one week then decided to persevere with one because no matter what the doc's say we don't want more getting into our bloodstreams than the very min although he says the amount is negligible. That was when I started using half of one twice a week because my way of thinking is half of it falls out the first time you use the toilet so if I use half maybe half will stay in better. I am persevering just now but it's far from right, it's better but still don't want this for the rest of my days. 

I cant remember, and I read all the discussions,  did you have a bad reaction to the estriol?  We are all different no matter how hard we try with all the different medications. I feel my waist or stomach is bigger and it's not over eating I think it's the estriol. My trouser button will not fasten. 

Hope you are getting better 

Your experience with the compound is discouraging.  I had a bad reaction to estrace so I am picking up a compounded cream this coming week.  I have many older friends, even older than I am who don't have this problem.  They have to have VA, but are they asymptomatic?

Thanks Olive. The problem is that we cannot get estriol on prescription here so it is compounded by a naturopath with added ingredients. So I do not know what was causing the severe burning but I spent most of yesterday in a tub trying to clear it out. The pain went from a 10 down to a 5 or 6 today. So I’m back to where I started. It would be impossible for me to persevere with the cream because I have too many other issues causing me pain. 

I have read it is very possible to have it and be asymptotic. They have no idea how lucky they are!  And the compound just might work for you. We are all so different and you will never know until you give it a try. 

lorrie, I think it's a matter of degree. Our body parts age, but clearly a percentage of women have awful problems. I never knew to what degree until I found this forum. Three years ago I was researching AV after my gynecologist said it was the cause of painful exams. She said further problems could develop and highly recommended using Premarin. I did not want to use anything with hormones as my sister did for years and has since died of breast cancer. 

I have relented & am now using compounded estradiol (less expensive than Estrace) because of progressing AV and now LS. (presumably doctors are now aware of the negative reaction to how Premarin is made, though I don't know how Estrace is).  My only symptom was an internal itch which was in fact caused by an infection..though the doctor attributed it to AV & LS.  I am now controlling the infection with flagyl.

Thankfully, I do not have the urinary tract problems that many of you are suffering with. I have had enough of a scare put into me that I will continue to use some form of hormone cream as quality of life absolutely has to be factored into these treatment decisions.

I was hoping the Mona Lisa treatment would bail all of us out if things got bad, but that has its drawbacks as well. Maybe the medical community just hasn't done enough research into this problem. Or possibly the only solution is to add hormones.

I do hope those that are suffering severely find something that helps. Having allergic reactions to meds that may have helped has to be horribly frustrating.The recent mention of Cymbalta is interesting. I know a woman who uses it for back pain.  

Wishing you and all others who are suffering the best.

Hi Olive , update seen GYN, he did a qtip test somewhere near urinary area and I almost jumped off table. He gave me antibiotic, said to soap in Epson salt which I did very little and to use the steroid and he of course cultured. Too tingling after the Epson I'm not doing that again, oh and no Replens for now so who knows what else in store for me now....

I insert 0.5g twice a week. You have to insert it lying down in bed just before you go to sleep so that it stays inside you all night. When I go to the toilet in the morning most of it drops out but it has had all night to do its magic. 

Hi Beverly, 

Just a quick comment on Cymbalta.  I have been diagnosed with Vulvodynia , AV, and LS.  I take cymbalta and gabapentin for vulvodynia ; calming down nerves.  This has a slight impact on pain, but I struggle with The AV, trying to find an estrogen that won't burn my sensitive tissues.  I've had estriol compounded with safflower out, vitamin e, and olive oil, but they all burn.  I have an appt with a bioidentical specialist at the end of August.  I keep searching for something to end this daily pain.  All of this has greatly impacted my urinary frequency... that's another issue! 

Yolanda and ladies - I am still suffering too one day better the next night no better. What I can't understand is why do all you ladies get compounded estriol and other compounded creams etc I know if I had anything compounded I would almost certainly be allergic to it. Does compounding make it weaker or what? Does compounded mean mixed with something?Until I got this AV plus urinary issues I didn't know the problem we have now ever existed. I just knew something was very far from right and was sure it was a UTI only thing was I wasn't ill and usually UTI's made me ill. I have been washing with Johnson's baby bath with no bad effects - just the original one - it actually feels a bit better for a few minutes after using it. Can you get it in New Jersey (am I right?is that where you live) I can't ever remember my mother suffering from this. In fact Never heard of anyone else suffering from this until I read all the discussions and am glad I did - better than any doctor. 

 

Beverly,

Do you know what base is used in your compound?  My pelvic pain dr. told me that they would give me samples of bases to try to see if I had an adverse reaction them.  When I called the compound pharmacy, they only use one base, but I forgot the name.  I may have already asked this, but did you have any adverse reactions to the compound?  I fear putting else anywhere my V!

Olive,

I could not tolerate estrace and that is why my dr. prescribed the compounded cream.  I am picking it up next week, so I have no report as to how I can tolerate it.  So far, I have not been able to tolerate anything!  I, as you, have a good day and think it's from something I used, but the next day I use the same thing and I am in misery.  Hope you feel better soon.

Meant to say soak in Epson , gonna use plain water for a while, then see , tired and exhausted and wander why so many women getting this, what did everyone years back do? Probably Vaseline and the worst ( at least for me Ivory soap) which they say don't use but temped, my mom used it. Then again she didn't have hysterectomy like me

lorrie, the tube does not mention the base though it seems it should. I can call the pharmacy and ask. I had no negative reaction to the estriol cream for the 1st 6 weeks using it nightly. Just when I got the internal itch under control with the flagyl days later the estriol cream started burning. I stopped usage for 3 days and burning stopped. I am now using it twice a week, So far (2 weeks) so good.

Will let you know about the cream base if I can get the info.

Safflower oil burnt me

Years ago they probably just got on with it and didn’t say anything because people didn’t talk about such things then. And before that, well, in medieval times the average life span was 30, so the majority of women probably didn’t live long enough to have menopause. It is our body’s way of telling us we are too old to have babies and the price we pay for living longer nowadays. 

I was not given an option for bases when my estriol compound was made and it burned terribly. I believe the base was called vagrestore. All I know is it smelled like black licorice. Not appealing to me. I would have kept using it though if I didn’t react to it. 

My gynaecologist told me that oil bases are best because they are neutral. Creams have other things such as preservatives in and ph adjusters. Sodium hydroxide isn’t often use to adjust ph - that isn’t caustic soda or lye which is extremely caustic and used as a drain cleaner. Why the yeast put such things in medicines intended for use on skin is beyond me.

Lorrie, my eyesight is going along with everything else! The tube does say Versabase (PF) cream. However, I can't find PF in a search. I find two different types of versabase, RX and PCCA, but no PF. The pharmacy is not open today. If you can't come up with more success than I could let me know and I will call the pharmacy next week.

I also came upon two other message boards which might have some info. Power-Surge and Minnie Pauz. I didn't get on them as I already am flooded with emails from various groups on various issues.

I looked through all my notes because I know I wrote down the name of the base, but couldn't find it.  Now that you mention versabace, it sounds familiar.  I am going to try to pick up the compound tomorrow and will let you know if it is the same as yours.  Thanks.

am to check the box of estriol I haven't started because my doctor said estriol cream and for all I know maybe what we get in U.K. is compounded too.  I couldn't find it earlier on it will be in another drawer. I never thought anything about it. I do think it helps me though but still some bits are not good like the terrible feeling in my bladder when I need to go quickly or in the night it feels really bad and then don't do much after all.