Flare up of AV

Thanks again.

Linda

patricia, does your dr. think bio identical hormones will be better accepted by your body or you will have less of an allergic reaction to them? According to what the Mayo Clinic says they are no safer, but who knows what they base these opinions on and how long have studies been done on them?

There was a gynecologist who wrote a book swearing by them, but that was some time ago now.

I am experiencing a slight burn after having used the estradiol cream last night. Am only using it twice a week. The steroid cream was fine then overnight created havoc. This is difficult to navigate, that's for sure.

I hope you can get relief.  I took bioidentical hormones for 2 years.  Unfortunately they did not help.  I had 16 UTI’s in the past 3 years.  I started seeing a new GYN last month.  She recommended a “non-hormone” hormone called Osphena.  It does not affect breast tissue-just vaginal tissue.  She told me it will take 12 weeks to get relief.  I am only taking it for a month.  For a few weeks I was feeling better but the burning started again last Sunday.  I am taking baking soda site baths and using cold pressed organic coconut oil for the burning.  It does help for a few hours but I must reapply it every few hours.  None of my family members or friends have this problem. I hope you get the help you need.

Hi Beverly,

Because EVERYTHING applied to vulva creates discomfort and pain, I'm trying the bioidentical hormones.  Dr said I should see full results in 5 weeks.  I feel that all my options are running out so that's why I'm trying this.  Hoping to see

Improvement! 

I know how you feel.  I don't know anyone who has this problem, except for ladies on this site.  People don't understand why there isn't relief.  As you said, it's living with chronic pain. It  has greatly reduces the quality of my life.  I'm sorry the bioidentical didn't work for you.  Got my first injection this morning .  I'm being cautiously optimistic .

My gyn is still away on vacation so I have been experimenting on my own. Am just about at the end of a month's use of women's probiotics. Can't say they made any difference despite costing $30. Am hoping to get my PH under control, but so far no luck. Read that the baking soda that some of you ladies are using is good for neutralizing PH so have tried a rinse of it. It feels very drying so I am using Aquaphor or coconut oil afterwards.

As my gyn did not leave the renewal script for Flagyl with her office as promised I thought maybe I could get my body balanced with other methods which would ward off this fleeting infection, but no luck. Apparently too little estrogen can create an alkaline environment which can cause infection, but my symptoms are so elusive tests register nothing. Can be fine for days then a slight itch and odor the next. 

Does anyone else have this problem along with the itch? 

I was thinking the same because it's not something you can go and ask someone outright if they have this problem. I just wonder if they did they would be relieved to talk about it too but then I don't to them. I am sure I have every symptom in every part and urinary issues. I was even dreading to go to the toilet but my bladder felt so bad one thing was as bad as the other. 

Hi Julie, I too last year got a pool, it's not salt water and after going in the 3 Rd time was on fire down below. Was at the beach too afraid to go in now. Well GYN today again and irritation continues so a different steroid to use, but no mention of hormone ju st back in a month and use inward area more than I was putting. Hope we all get better, this is nerve wracking. He mentioned about Lazer or courtorizing the area if need be? I am puzzled by all this since my hysterectomy 3 years ago this has taken over

Years ago I was told by my then gyn to avoid chlorine. Had a job at the time that involved getting into the pool, but had to work around it. Try explaining that to your rather obnoxious male supervisor! 

The salt water did not bother me at all, but I did come home and shower. Summer is coming to an end, but I do head south in the winter. Usually use the outdoor gym pool though. But if it requires the ocean I will make special trips!

In my case I think the LS is more the issue, although the gyn said it was caused by lack of estrogen. I hadn't eaten tofu for a while so made a conscious effort to make some this week. I've gone from avoiding hormones because of my sister's cancer to chasing after them now. 

julie, Actually, the pool water never did irritate me. My only symptom was the on and off itch then eventual sometimes odor, so I assumed it was an infection. Was diagnosed with AV 3 years ago, but as I had no discomfort I didn't use hormone cream. When I went to see a gyn in June about the itch she told me I had LS which certainly got my attention. That's why I am using the estradiol and up till last week the steroid. Until I talk with or see the gyn again I don't know where I go from here. I'm afraid of trying the steroid again, but she told me that's what would control the LS.

Beverly, 

Along with all the other "stuff" I also have LS and the steroid ointment keeps it under control. It is strong, so I use sparingly. 

Patricia 

Hi Beverly I was given clobetasol ointment now was that the one you reacted to cause after 3 Rd application I'm feeling more irritated , but says after few days it should stop that feeling. I don't know this is nuts, why can't something just work for us😞

Yolanda , 

I share your frustration.  I use the same ointment  as you.  But I was told it's pretty strong, and can further thin out our sensitive vulvar tissues.  I use it sparingly and it's been keeping things under control.  But I still suffer from Vulvodynia, AV, and. Bladder problems.  And you are right, it seems almost unbelievable that there isn't better pain control for all of our problems .  And besides this every Dr has something different to say... so darn frustrating!  Like everyone else, my life has been so comprised😔

No, though most women here mention that one. I was prescribed Triamcinolone Acetonide USP 0.1% ointment. May be less potent than what you used.

I used it for about two months then suddenly had a reaction. Certainly didn't feel right and turned very red. Have not yet been able to discuss it with my gyn. Nurse said I should stop for now...which I certainly was going to do. Just wanted to inform the doc what was happening. Have not gotten to speak with doc yet.  After using the steroid for a month she said things were improving nicely.

Maybe after some time not using it I can try again, but I am going to order the natural oil from lifeworks to see if that helps. Much more costly than the steroid though, which was only around $7.

Oh thanks Bev , yeah I have that one also, been using one steroid with a yeast cream in it but he switched me now guess cause no yeast hope it gets better instead of worse, I'll see by Monday I guess, didn't go back to derm cause she was a nurse practitioner not the Dr I saw there years ago when I got there so no real answers there. I'm fed up seems we are being experements. Even my GP is always someone new and nurse practitioner, some are great but some just send you out to everywhere not like years ago Dr took care of things and you were good to go . Hope my GYN know s what he's doing, he's in his 70s so he should have enough experience treating these issues. Scared I won't heal and what's next, horrible trying other things and worry a reaction

Thank you, Julie.  I'll give it a try. 

Hi Patricia, I replied to you yesterday but don't see my post. Do you use clobetasol ongoing ? My GYN has told me to use 2 twice a day for 1 month now since I still have irritation. I've only into it 3 days. Sometimes I think it's just all from dryness and rubbing but haven't had success with Moisterizer s and soaps so less for me still causes me irritation. I'm not sure even if I was placing cream right, Dr doesn't explain enough.Hoping I'm not causing more problems

Yolanda, Have your dr. draw a diagram of areas that should get the cream. Mine did without my asking and I was impressed. As patients we really need to take more control as it's our bodies at stake, not theirs. It will help them become better doctors. At this point most are younger than I am, so we have more experience being patients and know what methods work better than others.

Despite going into the field of medicine it seems some doctors are actually embarrassed about dealing with certain parts of the body.

Thanks Bev , he said to go insides of opening that it's not considered vaginal, but I think the previous medicine was better but says to use 2 weeks probably cause it was a yeast/ steroid. Did you have constant redness there?

yolanda, I think we're possibly talking about 2 different creams. My estradiol hormone cream (a pea size) is put at the vag opening. That is for the AV. Am using this twice a week, but had been using it nightly until it started to burn.

The steroid ointment (mine isn't a cream) was put around the figure 8 area nightly for the LS. Stopped using this over a week ago as it suddenly turned my skin flaming red and very sore.

Despite leaving a message for my gyn who was on vacation I have yet to get a call from her office with instructions re what to do about the steroid. Do I stop altogether or try using only twice a week like the hormone cream...I don't know. So for now I'm not doing anything. Something tells me if I call the office again I will be expected to come in for a third appointment to get the answer (another office visit charge).

I have ordered the Lifeway oil as it is all natural ingredients. Maybe by some miracle that will work for the LS rather than a steroid which I would prefer to avoid anyway.

From what you are saying I'm assuming you have something that feels like a yeast infection but is not? I have something fleeting that feels like BV, but am told is not by the doc. Clearly it's something. I just picked up Flagyl at the drugstore. Found out by accident it was waiting for me. Neither the gyn's office or the drugstore itself bothered to tell me the order was sent in days ago. The lack of efficiency is mind blowing.

Beverley and Yolanda 

have either of you tried Diprobase emollient ointment - I have used four nights and I know a difference it's like thin Vaseline and says it's for all skin conditions including dryness and itching. It's messy though but think we are just supposed to us thin film but difficult to do. I use it everywhere as far up as I can. I don't think I will use it every night..I Use estriol on a Wednesday night. 

olive, no I've never heard of it, but will add it to my list of possibilities. Right now I am waiting for the restore oil by lifeworks skin essentials to arrive. I'm really not all the uncomfortable. I use coconut oil. My issues are trying to stop the atrophy and reverse the LS. 

So far the most discomfort came from using the steroid cream which I have stopped. Still no word back from gyn.

Hi Olive, I will look into it also, for now Gyno gave another steroid I'm trying, and see what will be . Glad it helps keep us posted please of your progress

Just say your reply, yes that happen Ed to me once picked up a prescription and another was there I didn't know about, awful.

Well, ladies, my doctor finally called. Very apologetic about it taking so long. Got to discuss the negative reaction to the Triamcinolone steroid. As I thought, it is a lot milder than the clobetasol many of you use. I did trying using a little the other night without a negative reaction, so I don't have a problem with her recommendation to try using it just twice a week.

Told her I ordered the Restore oil from Lifeworks and would use that once it arrived. She immediately checked the ingredients and questioned the tea tree oil (as did I) because it's rather strong. Said if nothing else I'll smell good because of the frankincense. 

Re my phantom infection symptoms she said something she hadn't said before. The fluctuation of estrogen causes changes in the PH which makes me susceptible to fleeting infection. Yes, the flagyl will knock it out, but it will probably return with the drops in estrogen. So I am to now use a small amount of prescribed yeast ointment along with a small amount of the estradiol every night. (I had been using it twice a week). This is obviously an attempt to keep the estrogen level consistent.  I am also supposed to put some of it up a bit into the vagina.

So will try this new protocol of steroid twice a week (until the Restore oil arrives) and the hormone/yeast combo nightly and see how my body reacts. Will post progress or any problems. 

Hope your regimen works.

I see my GYN tomorrow.  I had a cystoscopy done last Friday.  The urologist told me my bladder is perfect but my vagina is terrible.  I know this since I have been dealing with burning and soreness.  I am going to ask her about some of the remedies that have been shown on this site.  I am still using coconut oil and baking soda site baths.  Some days I feel well and a few days later the burning starts up again.  I wish doctors had better options for us.

maryanne, what does he mean by the vagina looking terrible?? Have you been using any hormone cream. It seems to be the luck of the draw who gets UTIs and who doesn't. So far I have dodged that bullet. Has anyone given you an explanation of how a "terrible" vag condition causes UTIs? 

As I have posted, my doctor told me the lack of estrogen caused the LS which is an autoimmune disease (and obviously the AV of which I had already been aware), so I have issues other than UTIs. I was very reluctant to use hormones but see no choice at this stage. I am 70  and figure I need to pick my poison, so to speak. We all seem to develop different issues as we age. Ours are gynecological.

I'm glad we can at least share info among ourselves rather than just have our own problems rattling around our heads.

Is your urologist recommending any treatment?

My latest GYN prescribed Osphena, a hormone pill.  I took it for a month but had to stop it last week due to muscle pain.  I am 66.  This nightmare of mine started 3 years ago.  I was diagnosed with vaginal atrophy.  I had 16 UTI’s in the last 3 years, hospitalized 6 times due to severe infections.  I think all of these antibiotics have damaged my system.  I had a hysterectomy in 2016 due to large fibroid tumors.  I asked the urologist what she meant regarding the terrible vagina.  She said I have to see my GYN.  I asked her if she would send her findings to my GYN.  She said she would.  I’ll find out tomorrow if she sent it when I see my GYN tomorrow morning.  Life isn’t easy for many of us.  Thanks for your reply.

maryanne, that does sound dreadful. Do your doctors say how typical it is to get so many infections? Do you think if you saw a doctor that treated you holistically it might address your body's ability to fight infection? I have no idea, but you must be exhausted by so much discomfort,

I will stick with the hormone cream. Didn't know the pills could cause muscle pain. That's the reason I avoided high cholesterol medication. Told my GP I wasn't interested. Medical opinion has changed on that one anyway. Now they say I have the "good kind" so it's OK.

It occurred to me I did not ask the gyn about ordering a bone density test. If I'm that low on estrogen my bones must be in bad shape. Clearly she should have ordered it without my asking, but...

Guess we just have to patch ourselves together.

Hope your gyn has some answers for you.

As like you I questioned the new steroid cream, and asked if I could use Aquafor or Olive oil( anything outer)for I was a little worse ,( who knows) but of course I have to now go back in today. Well I didn't stop as he said but I'll go in to see if any improvement he sees since Friday, or if I should need the one I was using.Hope something better and not another goose chase or infection .Gee I've been seen so many times , ridiculous

Hi back from Doc, continue clobestorol and apparently not using enough ointment and no putting it in side more, if doesn't work in a few weeks a biopsy needed .I feel like I'm on a Ferris Wheel, around and around we go

My gyn sent in a prescription for Nystatin yeast cream.. (Said the over the counter Monistat burns). I'm to put a small amount in along with the estradiol nightly. I had told her it had started to caused a slight itch for about a day (using it twice a week), so this was added to the regimen.  I'm striving for a consistent estrogen supply to keep the PH levels from fluctuating (which is causing the fleeting BV).  On top of that she must think the estradiol is causing a yeast reaction. 

She also had mentioned over the counter product Refresh to balance the PH. Checked it out at the druggist. $25 for 4 applications which seems very costly if you have to use it regularly on top of the $80 hormone cream & steroid (or $25 an ounce lifeworks oil). 

I don't like the idea of using all this stuff at all, but will try the latest concoction. 

As has been mentioned before how would an more elderly woman with dementia issues possibly be able to keep track of all this? I better get this all worked out before my mind gets any worse!

Yeah we will be old reaching for probably the toothpaste thinking it's the cream, what a sin , Hope not lol

My GYN told me the vagina looks better than it did 5 weeks ago but the vulva and vagina are inflamed!  She wants me to try Clobetasol Ointment twice a day and Intrarosa tablet insert to be inserted vaginally every night.  I started using the Clobetasol today.  My insurance will not approve the Intrarosa so my pharmacy is calling my Dr.  Nothing is easy!  I may try a holistic Dr. if I get no relief soon.  I also have muscle spasm reactions to cholesterol drugs.  I take fish oil instead.  Hope we can get relief soon.

Hi Maryann, reading your post, I too am now using clobestorol, but I'm not sure it's helping either, hope you get more relief, I'm easily irritated that's a problem, what should help stirs the pot and I get another symptom.

I agree.  It is so frustrating that something will work for a while and then out of nowhere a reaction occurs.  I wish we could get the help we need to stop this ugly issue.

Hi Maryann,

I use clobetasol ointment when the LS flares up.  It has kept it under control.  I was also prescribed Intrarosa, but my insurance didn't cover any cost. It cost 300. Bc I'm so sensitive to almost anything I put internally or just apply to vulva, I couldn't use it.  I even tried breaking the suppository into thirds, but I became very irritated.  I have spent so much $ on various prescriptions.  It's been a very discouraging journey! 

I started using the Clobetasol ointment yesterday.  It has helped with the soreness on the vulva.  My pharmacy called me and told me my insurance will not cover Intrarosa.  They are calling my Dr. to discuss the alternative.  The cost would be $600.00!!  If I thought it would help, I would try it but knowing my system it would probably not help.  I have spent thousands of dollars on medications.  Nothing seems to help completely.  I am so discouraged.  Thanks for your response.  Here’s hoping we can get complete relief.

Just wondering if you are seeing any improvement at all with the new hormones?  I know it can take several weeks to see results but I am hoping you are feeling at least a  little better. 

Hi Julie, 

I was just thinking about you yesterday, knowing that I was going to keep you up to date with my progress.  This past Thursday, it was two weeks since the pellet injection.  I am feeling LESS of the AV pain!  I had symptoms of a hot poker going up into my vagina and was often unable to walk.  That has subsided, but I'm still cautiously optimistic! I did feel that my leg muscles were very sore, I had a pulling sensation, but that has lessened.  However, I have very tender nipples, but it's ok wearing a bra.  Oh, so many things to think about!  I'm still very hopeful that I'll continue to feel better.  This was the best decision for me, because I'd run out of options.  Also, the vulvar dermatologist was adamant that my condition needed hormones to control the pain.  I also moved forward on trying to get my bladder frequency under control.  I had a bladder instillation on Friday, this is one of a series of six.  The meds coat the bladder wall to calm it down. Decide said I should feel more relief after the third treatment.  On Wednesday, in getting a nerve block to help the pudendal neuralgia, sitting is an issue for me.  I get a block once every 4 months.  I have a wedding to attend in Rhode Island, flying is always very hard for me.  So fingers crossed I'll see some continuing positive results!  I'll keep you posted.  Hope you are feeling better.

Patricia

Regarding the 600. For prescription, I asked my pharmacy for the least amount they would give me, that's how I ended up paying 300.  But sadly, it was a waste.  So it sits on my shelf along with so many other meds that we're prescribed.  Maybe you could try that approach to lessen the cost. 

Patricia

Best of luck with your therapies.

Google it; you may come up with more info. I will send a PM with what I found.

That is amazing news (and I would take sore nipples over the other issues any day).  😉 Are the bladder instillations painful? I had a tough time with the cystoscopy. I am no better...dealing with all of the same issues as you. I did go for my first acupuncture treatment last week and although I found the treatment itself painful, I ended up being pain-free for three days afterwards. But all of my pain and symptoms have now returned. Seeing my naturopath on Thursday to try yet ANOTHER cream. If that doesn’t work, I am going to ask her about the pellets. If I remember correctly, the pellets contain Estrogen  and testosterone and you are taking progesterone orally. Is that correct? I have been referred to 2 specialists but they can’t see me until next year some time...got to love our health care system here.

But I am so glad you are finally getting some relief. My fingers are crossed for you too. I hope things continue to improve and you are able to enjoy yourself at the wedding. Please do keep me posted on your progress. 

I think the sensitivity to acupuncture may also be a sign of how much you are affected by it. At least that's how I perceived it. Some people fall asleep with it. I am pretty much knocked out by it and need to go to bed afterwards, but I feel much better the next day. It fascinates me and though I really don't understand it I can swear to its efficacy, at least for me. Some people feel that way about chiropractic which I have tried many times but never benefited from it. 

Of course, acupuncture is also costly, so that has to be considered also.

Julie, 

I can fall asleep during my accpunture,  Not sure I got the same results as you, but I feel it does help a bit.  It's on my list to return to.  Regarding internal PT, I went to four different women.  It's definitely not easy.  I had one Dr say, if you don't get results after 8 treatments, consider stopping.  I continued and hind sight being 20/20, I should have stopped, but I was so desperate. So I continued.  Sometimes I'd come home so sore, with pain lasting a full two days.  I truly wasted a bundle of money and time.  Three out of the four were covered on my insurance. But the last one, and most costly wasn't!  Live and learn ! 

Patricia 

The bladder instillation was not painful. It took about 10 minutes.  I held the meds in for four hours; easy to do.  No sure I’ve felt toomuch different, just a tad. Maybe a few less times up at night.  Unfortunately, they couldn’t get a time for me next week, so I have to wait a whole week for another.  I’m supposed to receive Six in consecutive weeks.  Anyway, I’m on board for my next one.  Julie, I’m sooooo tired of being in pain and discomfort, I’m forging ahead with as much treatment I can get.  I’ll keep you posted.  I’ll send you the names of the meds that were in-the installation.  But, no pain involved!  Will it work,time will tell.  Basically, they are treating me for interstitial cystitis.  I try to loosely follow the diet.  But I’ve done all the elimination diets before and nothing really jumped out as the culprit, except possibly wine. 

Patricia 

I don’t know how many more of the internal treatments I will do. I might continue until the benefits run out then stop.  And I think it might be something I can do on my own anyway. 

Julie, 

You mentioned that you had a cystoscopy.  Did you gain any insight regarding your problem with frequency?  I had one performed by a urogyne in June and he said my bladder was very inflamed, but before starting the bladder instillations, bladder cancer had to be ruled out.  So I had to go to a urologist for another cysto.  I had to wait 6 weeks for an appt.  This Dr found my bladder to look fairly normal.  The urologist didn't offer instillations, but encouraged me to give it a try. He only offered Botox.  So there you have two different opinions.  I have since read that even though you get a "clean slate" report about your bladder, there may be something very microscopic within the lining of the bladder that is causing the problem.  It all very confusing.  I hope your Dr offered you something to help with your frequency.  The bioidentical hormones are also supposed to help with bladder frequency, but the Dr said that it's impact would be slight. 

Patricia

Hi Patricia 

My scope was done by a urologist. He said the bladder looked “perfect”. However, I was told I could still have IC.  And I do not believe I mentioned this before but I have visible tissue in my urine and trace blood. The urologist prescribed mirabegron and sent me on my way.  He provided no explanation for my symptoms.  When I returned to him weeks later complaining of all the same symptoms he basically said there was nothing he could do for me and that I should follow up with my gynaecologist. My gynaecologist believes that this is the urologist’s problem and when I go to my family doctor, all she says is that her role is only pain management now that I am seeing the specialists (and pushes narcotics on me). This is why I finally went to see a naturopath.  So I have made zero progress. 😣

Julie, 

I think you made the right decision to seek help from a naturopath.  It's so frustrating when we rely on the experts in the medical field, only to be turned away.  Keep me posted on your upcoming visit.  

Wishing you pain free days. 

Patricia

You know Yolanda I do think the estriol cream is at last making things a bit better I am still doing half the applicator on a Wednesday and Saturday and twice a week I use quite a bit of dermabase - it's a bit like Vaseline - it is for skin conditions and dryness and appears to help everything under the sun according to the leaflet. I still have a problem which I still think is very bad, when I need to visit the bathroom I have this so horrible feeling in my bladder, really sore and desperate, and when I go don't do much. I am still up three times during night and when I waken during the night get the same sore urgency and if my husband gets up at the same time as me it's a race to see who gets there first. I am waiting to wet the bed one of these nights, I hope not but wouldn't surprise me if I did. One thing I don't have the same feeling of my inside falling out when I am on my feet for any length of time. it's still not easy. 

Hope you are finding things a bit better let me know how you are 

olive, despite tips from the moderator there are things I don't know how to navigate on this site. There is a woman named shirley who has had great success with her bladder problems because she was finally prescribed an antibiotic that solved her bladder issues. I wonder if you can find her post? She had communicated this to me in a PM, but I think she also said she posted it as a separate topic. Maybe you can find it? I think she was on discussions about AV initially. Sorry I can't be more specific.

Hi Olive , I will look for the cream,had an awful last few days, the Dr changed my blood pressure medication and I had to run to emergency room, it was dreadful! Well back on my old meds only higher dose . Dr wants me to go for laser surgery in that area that's not healing, and biopsy . Everything I put there makes it worse it seems so I'm sure he won't give me estrogen till he knows what's there im thinking.

I will look for that post I am in need of something. I was up four times last night and hardly do anything between that and the horrible feeling in my bladder I am demented.  We are up with our son twice midnight and 3am because his blood needs to be tested he has type 1 diabetes and the very worst form of MS making him totally blind now and we will not say anything about that to health care professionals because all they say is we should have him in care.  One good thing is they can't make us do anything we have complete power of attorney. I feel if I complain about the bladder issue they just bring up the same old story about putting John into care and we won't.  It's a hard life just as wellour minds are ok. 

Thank you you for giving me tbe name to search for I will do that 

did you ever try the estriol cream I could swear it is helping am sorry you had all these problems but I know exactly what you are going through. I sent you another message last night asking if you were the same person who has hip and drop foot problems will talk later about that if you are - 

got Carer's in just now with our son they are useless too we have it all done before they get here. 

Just wondering if you tried bladder instillations yet? Some women have had very positive results (but I haven’t tried that myself yet).  There is also an interstitial cystitis forum which is mostly about bladder issues. If you haven’t done so, you could take a look through some of those posts too for suggestions (although it sure doesn’t sound like you have much free time).

Hi Olive, don't know if my post got to you, well I went to GYN today, he gave me Premarin cream to try so Wish Me Luck! I will try it in a few days, hope you and all are doing well

Hope it does help its not good this all the time. I bet a right good dose of HRT would he,p us but not going down that road.  Was looking to private message you but think I need to see your name to find where to go.  Have a bit of worry with son just now and this doesn't help. Will try to private message you tomorrow 

thinking of you starting the new cream 

Hi Beverly, haven't seen much posts from anyone . Hopefully they all are improving Hows it going? Dr gave me hormone cream to try and like you I have sign of infection no one finds. Will try cream in a few days ugh sick of this! Afraid to put anything,I have a blocked feeling, like no secretions more antibiotics!!!

I keep losing my replies 

i used a whole applicator of estriol cream last night and will do the halves twice a week again but when I feel it is worse (or more worse if that's possible) I have been doing an occasional whole tube. Do you keep feeling you have an infection with stinging and burning all the time then you get spasms when you go to bed. That's in between getting up to the toilet of course. I have not been able to private message you because I can't find the envelope to take me to the private message for you. I clicked on your name but there was no envelope. I won't be doing it right. I have a friend who is trying to tell me she had this and was on estriol cream for six months  and now it's gone. I don't think it could have been what I have. 

Got to go to see to son now thst's why my nessages disappear I think because they are never there when I go back online 

can you let me know 

Hi yolanda, I'm doing pretty well. Both creams seem to be doing their jobs. I can't actually see any problems. The faint white line has disappeared. One side of the vulva may look sort of whitish, but I was never sure of that to begin with. The edge of one labia looks a little lighter but it is softer. Maybe what I am seeing is normal. Wish I had a light as bright as the gyn has!

The estradiol had definitely caused the area to plump up. I know that hormone cream is supposed to be used consistently or the AV will return, but am hoping I will be able to reduce it to twice a week instead of nightly. However, because of the presumed inconsistent estrogen causing the PH fluctuations which then cause the fleeting infection I've been using it nightly. It does make me sore though.

Itch and odor has subsided, but are definitely not gone. I filled the flagyl prescription but did not take a second round. Leary of killing off good bacteria, but like having the pills on hand rather than having to convince someone I need them.

Will see gyn in a couple of weeks. Probably last time before I'm away for 6 months. Waiting for health insurance adviser to return from vacation to discuss options so I can get coverage if away. This medicare stuff gets too complicated. 

Are you using the cream nightly? I now use a pea size along with the same amount of yeast cream, not that I am aware of a yeast infection. Wondering if that is what is making me sore.

Not sure what you meant by your last sentence. Are you on antibiotics?

seems the screen has changed to reply and get notifications. I am fed up, see 2 doctor s in same office different answers as to apply the hormone, plus my vaginal area feels sticky to the touch always weird and no answers again, Doc says no yeast but what is this considered? One doc says only outside other says both , up all night exhausted!

yolanda I am the same still got symptoms. no doctor ever said yeast to me but one of the times before saw about all my symptoms I used canistan cream and that's for yeast infections and knew a difference. I still cant sleep through a few hours without having to go to toilet and the pain is still there in my bladder and its as though I cant wait another minute and then only do a small amount. Sometimes the stinging is always there too and next time not so bad all in the same morning. What are your worst symptoms. I am only using the estriol cream now and a moisturiser like YES VM when I used it further up it was terrible the feeling it gave me but using it further down is not too bad. Have you ever persevered with estriol cream. I was using the estriol cream half an applicator twice a week but have gone back to once a week a whole applicator. I have a friend I write to and she says she had the same as us a couple of years ago and she is ok now and if she ever feels it at all she uses canastan cream and it is ok again. My doctor told me it would never go. My doctor is male and he gave me the estriol without any examination because he said that's what women of our age get.

once again these messages are different to find and reply to the person I want to reply to so hope you get this. Do you take a probiotic capsule and eat yoghurt that again I think had belped me. When I say helped it is still far from right.

Have you been caught up in these storms we have been pretty bad in Scotland wind and rain and very warm not like it should be at all. My brother in law in Wales has had storms and damage terrible really definitely global warming.

i await hearing from you

Hi Olive the doctor gave me Premarin cream but maybe i need something like you said , and possibly need more moisturizer too but now with the estrogen I don't know what to use. Weather in NJ was awful too bad rain thunderstorm.Im on antibiotic but its not helping me , Wish we were doing better

i know its terrible. Did you get antibiotics for the same problem. I looked up premarin cream and its estrogen cream in a small form I think. I honestly think the estriol cream is helping me although I really feel bad every time I use it I never wanted anything to do with HRT at my age. I hope I never go back to what it was like originally and I was relieved to get something for it although its taken a long time. I also have this terrible nerve damage from my knee down right side of my leg to my big toe after a hip replacement went wrong so then my toes curled up because I couldn't feel them so a year ago they took off my toes so now they have ruined my balance. I hide it as much as I can but its a struggle. Wish I had never had the hip replacement. That's why I struggle with getting up in the night without my toes and this awful VA. I do feel now the estriol is helping except when it decides to start stinging again. I used to have UTI's one after the other but since I started the estriol I havent had one. I don't think now when I look back, that every time it was UTI's I think now it was the start of VA and dryness. What are you still feeling.

Yolanda I still think probiotics help, that is a good probiotic like £20 for 60 and eat yoghurts with probiotics too.

Yesterday awful, feeling much burning, going to see dr who diagnosed me 3 years ago see what he thinks about my feelings plus now with only the Premarin, doesn't feel much moisturizing yet.Still feel like im blocked somehow in side and I stopped the antibiotic now wasnt helping guess wrong one maybe dr will prescribe one better for that area hopefully . Even the Premarin stings some, probably need biopsy of the skin

Sorry to hear about what you've been through Olive, this life has so many twists and turns. My cousin just had his big toe removed also from an injury

yolanda, you keep saying you feel blocked inside. I can't figure out what you mean by that. Does it have something to do with your body not lubricating itself? Can you explain it in one clear sentence? thanks.

Beverly and Yolanda,

I think i know exactly what is meant by the blocked feeling. For me, it feels as though i have a ball of dry wool inside, pulling and pinching on the tissue and on very bad days, it feels as if its bulging out of me. Lately, its been constant combined with the nasty burning. I was put on premarin but after the first use, i was completely swollen and raw. i have tried the estriol several times now but i react to that as well. I Saw my gynaecologist today. She said that premarin is one of the most irritating of estrogen creams but who knows...we all react so differently. I am now looking at full HRT. We are going to start with estrogel applied to the inner thighs nightly combined with oral progesterone to protect the uterus. We did discuss the risks but we also discussed quality of life. Like many others on this forum, i am dealing with 4 conditions (IC, AV, pudendal neuralgia and vulvodynia) so my pain levels are off the charts most days. I am on a cocktail of medications and have tried all forms of alternate therapies but nothing has worked. I have accepted that I need the estrogen to get better and applying it locally is not an option for me unfortunately. I hope each and everyone of us finds something to help alleviate these awful symptoms and pain.

I also wanted to mention, for anyone suffering with vulvodynia or neuralgia, that I was able to get a nerve pain cream compounded here. It contains baclofen, gabapentin, amytriptyline and lidocaine. It took a few days but i do believe it is helping somewhat. Unfortunately, i have only been able to use it externally so far but my hope is to some day be able to get off the oral gabapentin and just use the cream.

I do know that pinching & pulling feeling. A bit of coconut oil usually helps for me, but I have fewer issues than you (AV, LS) and I seem to be having few problems with the lotions & potions. How long have you been dealing with this? Did they come on gradually or all at once?

That new compounded cream sounds hopeful though!

My sister used to watch "I Love Lucy" reruns when dealing with chemo. Hope you have your laughing place to retreat to. Endorphins help to relieve pain!

Wishing you the best of all possible outcomes.

Exactly, that ,maybe swollen

went to my old gyn that diagnosed my cancer 3 years ago he switched my Premarin now to Esrtradiol cream, an antibiotic and outer cream Nystatin/ triaminicone im really fed up! What are we to do, this is miserable.He also says may be allergy related

I know what you mean. I get the same line, "it can be an allergy." Unfortunately, I am allergic to many drugs, especially antibiotics. i truly believe the cause of my vulva/vagina issues are due to three years of taking various antibiotics for 15 uti's. I am now using NYSTATIN ointment on the vulva. Dr. told me to use it. i am awaiting culture result reports. i wish we someone could find a cure for this ugly syndrome.

Awful for us , not taken seriously how we suffer like we want to complain and be misserable. I know the doctors are trying to help , and yes my allergies get in the way of treatment, but using nothing got me to this awful point, using products or not this was the result

yolanda, you are now using pretty much what I was prescribed. I have a compounded estradiol cream (now mixed with Nystatin for yeast which I don't think I have) and the Triamcinolone steroid ointment (milder than the clobetasol). I've been doing well with the combo for months now. Only nuisance is the phantom itch & odor which is what sent me to the gyn to begin with. I think I need the antibiotic rather than the yeast cream and was planning to suggest it next week when I see the doc. What is the name of the antibiotic cream you are using?

I also use coconut oil for moisturising in and out. Hope this works for you also.

Bev, i was given mupirocin cream for vulva, but now my gyn i saw yesterday gave me cipro pills incase theres an infection thats not showing on culture since i said i feel vulva blocked

I was told the blocked feeling is actually a sensation i am having from the nerves. Not one doctor said that it could be from an infection and i have no symptoms of an infection. So much conflicting information...makes it difficult to know what to do.

yolanda,

Both are for bacterial infections, though mupirocin cream is used for "impetigo as well as mild skin infections". I think the cipro pills would be stronger and obviously systemic.

I took flagyl pills, the itch went away immediately, but unfortunately returned. Have been reluctant to take another round; I don't want to overdo it & cause more problems.

Gyn's theory was uneven hormones affected PH which was causing the on & off vag infection, so now the estradiol every night mixed with the yeast cream. Just think it should be the flagyl cream instead. I've been using the yeast cream for a while. Things seemed slightly better, but not gone.

Olive I went to my old gyn he switched me to estradiol cream and an outer yeast steroid and antibiotic pills, fingers crossed, hope your doing well

Beverly,

IS your estradiol a cream or a gel? I have just been given the estradiol gel to try which gets applied to my thighs nightly together with progesterone pills. i was told the progesterone must be taken when using estradiol. Were you given the same information?

Mine is a cream. No, was not prescribed progesterone.

Hope you get some relief soon also, can't imagine being like this forever

Thanks Yolanda. You too!

Beverly, can you tell me the yeast cream the dr gave to use with the Estradiol

Beverly can you tell me the yeast cream you use with the Estradiol

Diflucan.

Hi Beverly, Doc confirm ed bacteria, so now metrogel and diflucan and the rest of the meds.He says Ill be most likely to us the gel 2 twice a week after for a while too . Seeing him next week and will see then whatever. So exhausted by this thank goodness for all the ladies we can vent too our concerns, thanks !

yolanda, seeing my gyn tomorrow. Definitely asking her about trying metrogel instead of diflucan. Didn't test postive for yeast and I already knew I responded to flagyl, so I don't know why she has had me using diflucan.

Hope to go back to estradiol twice a week. Every night seems a bit much. Think area is bordering on too plumped up.

Hi Julie,

I haven't talked to you for over two weeks. im no longer receiving this site. Also, this text responding to you is very different. Anyway, i just read your text and was reminded that you and I have the same 4 problems. i was out of town for one full week and it wasnt an easy trip. The AV is gone bc of the bioidentical hormones im taking. But I was hit with all the symptoms if vulvodynia. THE plane ride, set things off to a bad start bc of the sitting. Then all the other symptoms if frequent urination, false UTI symptoms, and the burning was really tough. I ended up calling DR for lidocaine. I had my six week check up with DR Ihave to csll her tomottow to get my hormone level report.

Im going to sdk DR sbout thr nerve cream youre using. My skin is just so darn sensitive. i hope you get this message

Patricia

Hello,

You will see I sent you a PM before reading all of this. Sorry about that. The nerve cream is working but i still cannot use it internally. It took awhile to work but I am happy to say that it does. i apply it on the labia majora all the way up to the pubic bone and i also apply it to a specific spot on my buttock right at my sit bone 4 times per day. So it is not going anywhere near those thin sensitive tissues yet but it is calming the external nerve pain to a point where it is gone completely for hours at a time. I so wish I could use it on the vulva! If i could, i believe i would be able to get off some of these meds. Let me know if you want me to send you the the concentrations of the ingredients i have.

yolanda,

sorry I gave you the wrong name. In pill form it is Diflucan, cream form is Nystatin.