Newly Diagnosed with AV - Issues with Replens

Is Ovestin by prescription or from a naturopath or did you buy it online? Did you have any UTI symptoms?  I am seeing a naturopath tomorrow. 

Suki,

Do you apply ovestin internally, externally or both?  Is it the same as estrace?  How often do you use it?

Thanks,

Lorrie

Suki, I see that estriol is used in "bioidentical hormone therapy", but I don't understand what that means if it is a hormone that is created by our bodies. What is the source of the estriol? 

I am now getting burning with the compounded estradiol cream and trying to find an alternative. My doctor has said to use it twice a week instead of everynight. But if the burning continues despite less frequent use I want to have something to suggest. (Not that she accepts suggestions well).

What country are you in? I’m in the UK where we get ovestin on prescription from our gp. I know it isn’t available in the US but I know some women have it compounded by a compounding pharmacist (whatever that is - I don’t think we have those here).

Ovestin is applied high up internally using an applicator and the effects spreads through the tissues down there. However, because I had particularly fragile external skin that was prone to splitting I also rub some on externally.

Harvard health publishing says it is made, or synthesized, from a plant chemical extracted from yams and soy.

There is an interesting piece about the benefits of estriol: [b]http://www.virginiahopkinstestkits.com/estriolhormone[b].html

I am seeing a naturopath today who specializes in bio- identical hormone therapy to ask those questions about Ovestin or anything similar. I am in Canada. I will let you know what I find out. 

Try using estriol on its own Ovestin is a brand name for estriol.  

I have tried every moisturiser and had no good results but estriol on its own is beginning to make me feel normal again. 

It takes a while but the stinging and burning is better but not 100% yet. It's the urine issues I am hoping it will sort out because my bladder does not feel right it feels like it is sore but not a UTI soreness and goes after I have been to bathroom. I never pass amounts like I did previously. 

Am fed up of it all. 

Hope you find something that really helps. 

How long did it take before you saw some results with the estriol?  My bladder issues are significant so I am hoping it helps with that too.  

I had vaginal dryness, painful sex and uti. All that was cured after just a few weeks of using estriol cream. I used it every day for 2 weeks then gradually reduced the frequency to twice a week. I saw a big difference after those first 2 weeks. Haven had a uti since starting with the cream.

haven’t

suki, compounding pharmacies make meds up tp order. In my case my doctor first prescribed Estrace, but the cost was $300 at the regular chain pharmacy! I was able to get the same ingredient (estradiol) made into a custom cream for $78 at the compounding pharmacy. The doctor has to send the script to them.

That is unacceptable. We get it on prescription here in the U.K. for the equivalent of $11 and it lasts me two months.

Suki, you are giving me hope and making me feel positive about this choice. I pick the estriol up today at a cost of $72 Canadian for 1 tube which is a 1 month supply. I do have private health care coverage but it is unlikely they will pay for it. If it works, I will try to source it elsewhere to see if I can get it cheaper. 

I’ve been on it for about a year now and still enjoying great sex (I think it has made me more sensitive 😉, and other women have found this too), no uti’s. Just nice and moist and plump. Goodbye dry shrivelled vag!

Thought Canadian meds were less expensive than the US. Your natural hormone is as much as my estradiol which is somehow produced. Wonder why that is? (I find it very disturbing that so much money goes into war games and so little into keeping people healthy.)

If you do find a less expensive source do you think Americans would have access to it?

I am assuming the cost is so high because it was compounded. However, I have already done some research and estriol is, in fact, available in Canada and the US through Amazon at a fraction of the cost.  There were 5 or 6 different creams available. So the question then becomes what exactly are the other ingredients in these creams, where are they made, etc.  I did not have time to look into that but I will if this works for me. I guess when it is being made for you at a pharmacy, you know exactly what is inside. 

I have no idea what other ingredients are in the cream that was made up for me. Assumed it's only estradiol in a neutral base. There is no list of ingredients other than estradiol. I took a 3 day break from using it due to burning. Used it once Friday with no burning reaction. Will try it again on Tuesday. If it works I will go with twice a week. If it starts burning again I will ask the doctor about estriol. 

I really am confused about the differences. This is one explanation I got off the internet. Says nothing about estriol being bioidentical, so maybe you can get bio-identical versions of all of them (?)

Estradiol is the estrogen of youth. It is most abundant when we are young and full of energy, no wrinkles, weight easily to control, sex drive skyrocketing, low to no incidence of heart disease, cancer – in general feeling great and if we took a minute to be thankful to any hormone in our life, Estradiol should be the one.

Estradiol stays high during the teens and twenties and starts to slowly decrease in the 30s and 40s and by the time we reach menopause, this beautiful hormone has all but disappeared from the estrogen scene. Not to worry, we can supplement its loss with bioidentical Estradiol which looks exactly the same as the human Estradiol molecularly and does have the same effects.

 

Estriol is the estrogen of pregnancy. When we aren’t pregnant we do not make any significant amounts of this hormone. Life during pregnancy is very different not only from what we see in the outside world but even more from the hormonal balance perspective specifically the amount of estriol produced. Large quantities of estriol are released into the blood stream to help feed the baby’s nourishment and life source, the placenta. When the pregnancy ends, the amount of estriol we make rapidly diminishes and we are back in the Estradiol production mode.

 

Some research on estriol has suggested that the use of estriol in menopausal or just estrogen deficient women is better or safer than Estradiol. The data seemed to support a hormonal support for the heart and also for vaginal and other mucosa. Many physicians use estriol in conjunction with Estradiol in the form of Bi-est to help balance estrogen need in states of estrogen deficiency or imbalance.

 

Estrone is the estrogen of menopause. It is a reactive, negative and miserable feeling estrogen. The increased production of estrone coincides with the increased incidence of breast cancer and heart disease in women over 50. I am not a fan of estrone and in my experience with estrogen has taught me to avoid the use of estrone and even neutralize it by increased use of progesterone as the women age and make more of this angry, old estrogen.

Suki,

Did you have the vaginal burning or were  the worst of your symptoms on the outside?  If you did have internal burning, I guess the estriol helped with that too? 

I didn’t have any burning, just dryness and painful (impossible) sex. Like I said the oils she helped with that for 4 years but when sex became painful again and I got uti’s I tried the estriol cream and never looked back.

Suki, what strength or percentage of estriol do you use? Because of my sensitivity issues, the doctor is starting me on 0.25%.  I am guessing that that is a very low strength and will need to be increased?  The dosing is 1 gram each night. And I foolishly tried the Gynatrof.  Had the same reactions as I did to Replens within an hour!  Tissue like discharge and swelling. So I am sticking with the coconut oil. I find it very soothing. It is helping a little with the pain but not the burning. 

Sounds like you are just like me - I can only tolerate natural oils (except the estriol cream). Anything else either stung me or made me swell up huge! I too find coconut oil soothing. My estriol cream is 1mg (each gram of cream contains 1mg estriol), so that is 0.1%, I think. And I have to insert 0.5g each time, which contains 0.5mg estriol. Unless my maths is wrong that is a lot less than yours?!?!?

That last comment made me laugh. I am terrible at math. 😂 Had to ask my hubbie.

So you insert 0.5g and it contains 0.5 estriol.  I insert 1 gram and it contains 0.25 estriol.  So I think that means that although I am inserting twice as much cream, my prescription of estriol is 1/2 the strength of yours. I think. Lol

Oh. I was looking at the %. Mine being 0.1%. I thought yours was 0.25%. I didn’t realise that 1g of yours contained 0.25mg of estriol. Doesn’t that mean yours has a 0.025% concentration? 🤔 I’m confused .... 🤯

I honestly have no idea. 

We get it in prescription in the U.K.

Both internally and externally. Ovestin contains estriol, the protective estrogen. Estarce contains estrodiol which does carry risks but those are very minimal for locally applied estrogen.

Hi Julie, I am in Canada as well and have had VA since May 2017; ruining my life at 58! I have been on vagifem for 12 months but no real change in my urinary pain and pelvic pain..they even have done testing for IC. I am seeing my gynaecologist tomorrow and will ask him for something different, compounded or the cream you are trying. Wish me luck as he thinks vagifem should do the trick? 

One question for everyone is have you adjusted your diet in anyway to cut out acidic foods? My urologist said the tissues of the bladder and vagina touch so if the vagina is dry so is part of the bladder and acidic foods may aggravate my symptons. I cannot pinpoint certain foods but sure dont eat anything acidic when the burning, spasms etc are going on!

 

I don't have it, but a quick search brought up: 

Less Irritating Foods

Water

Low-fat or whole milk.

Bananas.

Blueberries.

Fruits such as honeydew melon, pears, raisins, watermelon, and cucumber.

Vegetables such as broccoli, Brussels sprouts, cabbage, carrots, cauliflower, celery, mushrooms, peas, radishes, squash, and zucchini.

Certain foods and beverages might irritate your bladder, including:

Coffee, tea and carbonated drinks, even without caffeine.

Alcohol.

Certain acidic fruits — oranges, grapefruits, lemons and limes — and fruit juices.

Spicy foods.

Tomato-based products.

Carbonated drinks.

Chocolate.

Have you already been following this diet?

Hi Pookie,

I feel your pain...literally. I just turned 50. I am already exhausted and it has just been since April for me. I am on the cystitis diet and have given up all of my favourite things (especially coffee and spicy foods). It’s been very hard and I’ve lost far too much weight for my body size but that could also be from the pain. Unfortunately, the diet has not helped with the UTI symptoms or infections. My cystoscopy was clear so I don’t even know if I have IC. There are days when I just want to be able to eat like I used to but the pain is a constant reminder that I shouldn’t. The estriol compounded cream burned terribly for me but it sure sounds like many women have had success with it. This cream was provided to me by a naturopath. Tbh, I don’t even know if Canadian doctors prescribe estriol. As for the Vagifem, I have read many posts as well as the product information and it seems the majority of women see improvement in as little as 2 weeks but it could take 8 or 12 weeks. If you have been on it for 12 months with no improvement, I agree that you should definitely try something else.  I have been using the organic coconut oil for a week now and my vaginal pain/burning is a touch better. I also find it soothing, especially if I have to walk any distance. I have been inserting a small quantity 3 times/day or whenever the pain starts to creep up. I also managed to find the key e suppositories here but have not used them yet. Not sure if you have already tried these suggestions but just thought I would mention them. Good luck tomorrow.  I would be interested to know the outcome.   

Question for you Pookie...I picked up a box of non drowsy Claritin today. I am going to start it tomorrow morning. Have you tried taking antihistamines for the UTI symptoms?  I did some research on that today and some people claim it has really helped them. 

Hi Julie , yes i have been taking an antihistimine since Sept last year it is hyroxodine as this is what helps people with IC (although never been diagnosed with that yet) also take elavil 50mg that is supposed to help with nerve pain in low doses, as well percoset as needed for pain! Saw doc today and he says i can try DHEA for a month to see if it helps, i stop the vagifem but still use the estriol gel on arm and progestrone pill every night as i still have my ovaries, will see if this helps. 

Julie I would say the burning and stinging is much better with the estriol. What is not better is the terrible feeling I get in my bladder when I need to go to the bathroom. It is the most terrible feeling sore stinging and a must get to the toilet feeling then I do very little. Then I can be up again in an hour same feeling again. Apart from that the other vaginal bits are much much better. Many of the ladies here talk about compounded estriol and in the UK I have never heard of compounded anything so I checked my box of estriol and see the ingredients and it states peanut oil amongst other things - if I was not so lazy would get the box - I will later just sat down. I suppose that means the estriol in the U.K. is already compounded without saying anything and we get it like that whether we like it or not. I say the burning and stinging is much better and it is but I still feel it is still just there in the background. That's the  VA bit but still need the bladder bit sorted but haven't had a UTI since I started estriol. I had UTI's constantly. 

 

Oh my...you definitely know a lot more about this than I do. I have not been prescribed elavil yet (Amitriptyline correct)?  My doctor wants me to try cymbalta first. Have you tried that?  I was also prescribed T3s but considering that there could be a long road ahead of me, I am reluctant to start on them for fear of addiction. Has anything worked so far to alleviate some of your pain/discomfort  at all? 

As for the estriol gel, I didn’t know that existed here. I will have to ask my doctors about that.  Someone else on this forum is using Intrarosa (which I believe is a form of DHEA) and if I remember correctly, she is having some success.  Fingers crossed for you that this works. This might be a silly question but since you are using the estrogen gel with an oral progesterone, are you having a period?

Hi Pookie, 

I've been following your conversation with Julie.  Two years ago, I started to follow the IC diet, along with taking the antihistamine, but there really wasn't any change.  But maybeI'll give the antihistamine another try.  What is the DHEA prescribed for?  I tried many compounded estriol creams, but my tissues are so sensitive I have to stop.  The estriol on your arm is interesting, do you feel you're getting positive results?  I've scheduled an appt with a Dr who specializes in bioidentical hormones.  I'll be sure to ask about this.  This forum is great to learn about what works for all of us in this horrible, unpredictable pain.  

Are you still on the IC diet Patricia?

It's encouraging that the estriol  has helped you at least some.  I was to pick up my compound today but it wasn't ready until 4:00 p.m.  Now, I can't get it until Wednesday.  I was thinking today that most of my burning is on the left side in the back near the perineum (sp?)  I am wondering if it is the polyester thread that sews the cotton casing on the elastic. It feels very sharp.  I don't know what I will do if the compound doesn't work.  I can't take antihistamines or antidepressants. 

At least some of your symptoms are under control.  I’m very early into this (although it feels like an eternity already) so I still need to do a lot of experimenting I guess. Have you tried D-mannose?  It comes in a powder form here that you mix in water and drink. It’s not a cure for me but I do  believe it helps a little when my UTI symptoms are really bad. 

One other question, has anyone every tried prelief for bladder issues? Wondering if it might allow me to enjoy a cup of coffee or a glass of wine once in awhile without being in pain. 

Hi Julie yes I did try Cymbalta last fall and it was not for me. They gave it to me cause I was in such a state but it made me lose my appetite and I could not sleep. I kept telling them I am not depressed I just want the pain to stop!😩 I have taken the T3’s yes was on about 12 a day when this all started last May!!! I know eh?? Well I thought screw this and weaned myself off them very slowly and only take them now when I have elevated pain.  I also take a Percocet at bedtime to help with pain. I will say that if I am having spasms nothing helps. That is when I feel the saddest! The T3’s did help though so I would say give them a try, my doctor told me she has never seen anyone get addicted to T3’s??  I do not get my period anymore even with all the crap I am doing so been about 8 years now and I am 58. Yes Hoping the DHEA will do the trick!!  Isn’t this fun😜

Hi Pat

I am not sure as I took it in to the compounding pharmacy and pick it up Aug 13 after my vacation, will let you know then. The gel on my arm is not really doing anything for my pain but he is keeping me on it as he says it also helps with mood and god knows we could all use this......no ones knows the pain I am in all day every day! 

Sending healing thoughts to you all

Jane

Olive, Pharmaceutical compounding (done in compounding pharmacies) is the creation of a particular pharmaceutical product to fit the unique need of a patient. As far as I know, we don’t have those here in the U.K. The estriol cream we get here is manufactured by a pharmaceutical company and comes as it is, it is no time tailored to fit the needs of the individual.

I have just done a quick gooogle search and found one compounding pharmacy in London that claims to be the only compounding pharmacy in the U.K.

I was put on amitriptyline for vulvodynia. Now that is better I have gone into menopause and have vaginal dryness my dr said to stay on the amitriptyline because it will help with the pain of VA. I must admit, although I became very dry I have never been in any discomfort (only when having sex). 

Pookie- I just messaged you. 

How lucky you are!! I have asked my doctor specifically about Amitriptyline and she pushed cymbalta instead. I don’t know why because she isn’t much of a talker.  

Hi Julie,

I try hard to follow it.  I stay away from the fruit that is deemed risky.  Tea, chocolate, and wine cause frequency of urination, so I try my best to eliminate those as well.  There is a bit of a difference , but not 100% by any means.  I'm up at least seven times during the night .  

Believe me, I know your pain!  It's unbelievable that modern science hasn't found anything to help us women. Sad, but true! 

lorrie, I am also having a perineum problem lately, but not to the extent you are. Underwear doesn't hurt, fortunately. Not sure why this should be happening with both the steroid and the estradiol being applied for a while now. Doctor had said at 2nd appt things were coming along nicely, but this feels not nice. Hopefully just a mild setback.

Do you have bad reactions to antihistamines and antidepressants as well? Have you tried acupuncture? Might be able to help you somewhat. I think our nerves can get over reactive and it becomes like a domino effect. Acupuncture is very relaxing. Hypnosis is good too if your insurance covers any of those types of treatments.

From what people have reported estriol takes the longest to work, but I'm sure you are eager to start. I became the same way after avoiding hormones for so long. Once it became inevitable I wanted to begin yesterday.

julie, don't wait for the doctor to talk. Ask her whatever you need to know. I'm always full of questions for them, then when I leave remember others I should have asked. I went with a list of all the meds mentioned by women on this site to get the doc's opinion of them. Probably only got through half the list but it was better than nothing.

We have to be proactive. For the most part I think they feel the less they say the better. 

Hi Beverly,

You are so right! I have always been very assertive with physicians but lately, I’m just a big emotional mess when I get infront of the doctor. I guess I have never been in this state before.  But thank you for the reminder. I needed that. 🙂

Cymbalta seems to be in the same group of medicines as amitriptyline, gabapentin and nortriptyline (the ones that tend to be prescribed in the U.K.) which used to be used as anti anxiety drugs and are now used for neuropathic pain.

I was nice and juicy and plump only 2-3 weeks after starting on estriol cream. We are all different and react differently to different medications. Some women can react to hormone creams by getting vulvodynia which may be confused with the pain caused by VA. Acupuncture is very good for treating vulvodynia.

This may sound stupid where do they put the needles because my husband had that for back pain and the needles went into his back. 

Hi, Suki girl,

I have researched the drugs you mentioned because my PCP wanted me to discontinue Lorazepam (benzodiazepine) and take an antidepressant.  Cymbalta is an SNRI (serotonin norepinephrine reuptake inhibito)r used to treat anxiety, nerve pain, OCD, etc.  Amitriptyline and nortriptyline are tricyclic antipressents.  Gabapentin is an anticonvulsant used to treat seizures, and postherpetic neuralgia (as in shingles) but it can be used off label for neuropathy, neuralgia, anxiety, etc.  My electrophysiologist advises against using any of the above due to having heart arrhythmias and taking amiodarone which can cause a dangerous heart rhythm.  I can't even take an antihistamine, so none of the above can help me with vulvodynia.

I had them at the very base of the back - on the sacrum 

Yes, sorry, I am aware of what they are all used for, I just couldn’t be bothered to type it all out so just lumped them together under anti depressant / anxiety drugs that are now used for neuropathic pain. Obviously they are not suitable for someone with a heart rhythm disorder - there is a warning to that effect on the leaflet in my amitriptyline packet.

Suki, I responded very quickly, but to the compounded estradiol cream. I still have a little sensitivity on the outer areas, but that is probably because of the LS, though the steroid is being applied for that. In my case it was an infection that was causing most of my discomfort yet the doctor came up with nothing with the smear and gave me nothing for it.

She told me "sometimes when something is happening on the outside it feels like it's inside". Had I not eventually insisted on the flagyl I would still be suffering with it. Can't help but wonder how many other women may be having a chronic itch that could be resolved with flagyl but are not prescribed it because the smear indicates no infection.

Didn't know that hormone creams can cause vulvodynia. To use hormones for pain caused by AV then end up with some mysterious pain that has no known cause or cure sounds particularly cruel.

I think yours may be the 1st post I've read re acupuncture being effective. I am a big fan of it as it cured me of 12 years of chronic neck and shoulder pain. I've wondered if it can stimulate estrogen production.

There are many claims about the curative powers of acupuncture. Being a university research I like to see claims backed up by robust scientific research and the things that acupuncture has been shown to help with are back pain and neuropathic pain. The consultant dermatologist I saw for my vulvodynia told me that her vulva pain clinic patients have a lot of success with acupuncture. While amitriptyline, pelvic floor exercises and manual desensitisation helped me I really believe that that it was the acupuncture that cured me.

Anything that traumatises the skin in the vulvar area can cause vulvodynia, including having a bad reaction to medication. 

Beverly,

I sometimes wonder when I wipe after a BM if I wipe too far up to the perineum.  I bought the toilet paper that starts with "7th" at the pharmacy starting with "C"  and I used it for the first time yesterday.  I think it's softer than the paper I usually buy that is the opposite of "southern".  Sorry for all the riddles, but I don't want my comment deleted!  As far as antihistamines and depressants, I can't take either due to heart arrhythmias.  I'm also concerned about the electric current used with acupuncture.  Where do they stick the needles? 

I'm confused on the differences between estriol and estradiol.  I don't know what hormone will be compounded for me.  Does estrace contain estradiol and the compounded cream contain estriol?  Do you apply it internally or externally?  My dr. told me to apply it externally.  I used Aquaphor last night after my shower and thought I would go through the roof.  I had to wash it off and use ice!

Lorrie,

When I used estrace I followed the directions of using it internally.  I couldn't tolerate it. When I used a compounded estriol, the direction were to apply externally, but once again, I couldn't tolerate it.  I had the same reaction. To aquaphor, I couldn't wait to get it off.  Having a negative reaction to everything that is supposed to help makes it impossible to get relief. 

Me too Aquaphor, thought it was just me, I'm going nuts with this now back to square 1

I'm picking up my compound tomorrow and I dread using it!  I don't know if the compound will contain etriol or estradiol.  Are they the same?  I bought the toilet paper and didn't apply anything today and I feel so much better!

Aquaphor was recommended by a CNP and a gynecologist.  I just looked (should have done that before) and it contains alcohol!

Estrace contains estrodiol. The four major naturally occurring estrogens in women are estrone (E1), estradiol (E2), estriol (E3), and estetrol (E4). Estradiol is the predominant estrogen during reproductive years both in terms of absolute serum levels as well as in terms of estrogenic activity. During menopause, estrone is the predominant circulating estrogen and during pregnancy estriol is the predominant circulating estrogen in terms of serum levels. Though estriol is the most plentiful of the three estrogens it is also the weakest, whereas estradiol is the strongest with a potency of approximately 80 times that of estriol.

Lorrie,

I too have found that applying nothing  except an ice pack is the best way to go.  And I have also dreaded trying a new compounded estriol, just because everyone of them have made me feel horrible. Once applied, it takes so long to get back to normal.  I have doubted myself and have retried coconut oil, vitamin E, and other products and I react negatively to everything.  The ice pack works, but once I start moving around, the pain is back. 

Thanks for the article.  It mentions it should be taken every other day for two weeks.  Then does one stop using it?

lorrie, I am trying to make my way through all this hormone info myself. As I understand it estradiol is an actual hormone and estriol is a bioidentical one. I was prescribed Estrace (with estradiol), but the tube was $300 so I was able to have it made up (compounded) which was far less expensive.

Was told to put it just inside the vag opening every night. After approx. 7 weeks it started to burn, so I am now using it twice a week.

Aquaphor is basically vaseline as I understand it. I was told to use it on scabs after having laser treatments on my skin. I can't imagine why that would burn you. Does it have an ingredient that you know affects you negatively?

Re toilet papers, it never occured to me till reading posts here that they could cause irritation. I will try the brands mentioned. I assume my problem is due to the LS I was recently told I had. I have been using steroid cream from that. I was not aware of any problem, until recently when wiping myself.

Re acupuncture, I believe they follow what they call meridian lines. They also sometimes needle at the place that is problematic, sometimes places that seem opposite. I have found it to be remarkably effective. The first time I had it I actually fainted. I know most people would avoid it after that, but I was just convinced that I must be super sensitive to it. I found another practitioner who used smaller needles (Japanese, I think) and it worked like a charm. My issue was muscular and very long standing. 

Sorry, I’ve got lost. What are you referring to?

Beverly, oriental acupuncture is based on the lines of energy called meridians. Western acupuncture (which is what I had) is based on the nervous system and for the pelvic region the needles are inserted near to where the relevant nerves to that region exit the spine. In western acupuncture they pass an electrical current through the needles. I found this very effective in dampening down the overactivity of the nerve season in the vulva area - I felt the benefit from the first session and the effect was accumulative afte each session I had.

Suki, I have heard people mention having current attached to needles but had no idea what they were talking about. Glad it was able to help you. Doesn't sound too appealing to me, but then what I had sounds unappealing to others. My feeling is whatever works, go with it. 

I know nothing about the experience of vulvodynia, but from these descriptions it sounds as if the nerves are in a state of hyper-reaction and can't turn off. Obviously I am not a medical person, but I have had allergic reactions like that. My body just seemed to go out of control and I had to go to the hospital or doctor's to get a shot which would calm everything down.

It's interesting that electricity would calm the nerves down. Wonder if it works on the same premise of electric shock therapy? Yet they use paddles to shock hearts back into regular beating, right? 

Do you specifically choose the western acupuncture because it was more suited to nerve issues?

Western acupuncture was recommended by the consultant dermatologist (specialised in vulva conditions) I was seeing. People shouldn’t fear it - it feels wonderful. Afterwards I felt so relaxed and chilled. My daughter is having oriental acupuncture for a patch of allodynia on her back (sadly my western acupuncturist is no longer practicing) and she reports feeling of euphoria and relaxation after a session.

Patricia,

It seems that we both are sensitive to the same things, i.e. Aquaphor, coconut oil, etc.  What brand of soap do you use or do you use just water?  I don't feel clean enough to use water.

I don't want to speak too soon, but I began using the chlorine free toilet paper a day and a half ago.  Also, I have not applied any creams or ointments.  Praise God that I have not had any burnign for a day and a half!  I do not know if its the use of the new toilet paper or not applying anything to the vulva that has stopped my burning for a day and a half.  I pick up the compound today but I'm not going to use it until things calm down.  I don't want to jinx myself, but I feel like a new woman!

 

Suki, never heard of allodynia ("central pain sensitization..increased response of neurons.. following normally non-painful, often repetitive, stimulation. Allodynia can lead to the triggering of a pain response from stimuli which do not normally provoke pain".) Doesn't that sound exactly like the vulvodynia, just in a different area??

I also feel relaxed to the point that I typically go to bed after an acupuncture treatment. If I don't I tend feel ill. An odd response, I know, but the next day I feel great. I can only surmise it releases a toxin build-up of some kind. The practitioner has said it releases stuck chi (energy). 

The series of treatments I had for shoulder and neck problems (the result of a 3 year frozen shoulder) were sometimes very painful (again probably not typical), but the end result still amazes me. Pain free after 12 years of constant misery just disappeared.

That's great, Lorrie! You deserve some peace and normality. Hope it continues.

Lorrie,

It sounds like you are on the right path...pain free!  Regarding soap, I never use soap in the vulvar area.  I've read many articles stating that you can cleanse with just water and you will be clean.   When I'm home, I will often cleanse with squirt bottle of water after urinating.  

The only ointment I use is a prescription for the LS.

I hope you continue to feel better !

I think ‘dynia’ is used for neuropathic pain. So, with vulvodynia it is in the vulva area and with allodynia it is on normal skin. Allodynia can be static (touch) or dynamic (stroking). My daughter has a patch of dynamic allodynia on her back, so touching it is fine but if I stroke the area it causes her a lot of pain ... burning, in fact, like vulvodynia. As with vulvodynia the drs have no idea. First they said it was shingles and the rash would eventually appear - it never did. Then they said it was a trapped nerve. I’ve had trapped nerves and they do not cause such pain. Because acupuncture cured my vulvodynia I booked her in with an acupuncturist.

I too never use soap to wash that area - is is the wrong ph. In fact soap I should alkaline and the vagine is acidic. Upsetting the ph balance of the vagina can encourage yeast overgrowth. Using perfumed products can also irritate and make the area susceptible to infection. I have noticed that even washes designed for that area contain perfume - ridiculous! Even tap water is the wrong ph. Human skin is slightly acidic (ph 5.5 is the optimal ph for skin), the vagina even more acidic at 3.8-4.5. Tap water is around ph 7. I have read that after washing the skin with water it takes 2 hours for the skin to return to its optimal ph. I wash my intimate area by wiping with coconut oil (oil has no ph).

Suki, 

Thank you for taking the time to write about the ph of water.  Now I need to rethink cleansing with water after urinating,  maybe I'm doing more harm than good

Hi Suki,

I have been doing some research on vulvodynia and pudendal neuropathy. I have an understanding of what both conditions are but am confused as to how these two conditions differ. Do they co-exist?  Is it the pudendal nerve that is responsible for the vulvodynia pain and if so, I am wondering if this nerve would be the focus of treatment during acupuncture.  Thinking you might already know the answer since you have had the acupuncture treatments. 

I think that vulvodynia can have many different and sometimes multiple causes. One cause can be a trapped or damaged nerve, but the pain is felt at the nerve endings in the vulva (just as is sciatica where the nerve damage is in the spine but can be felt all the way down in the foot) and such women are helped by chiropraction or physiotherapy. Other causes can be trauma to the nerve endings in the vulva skin due to chemical trauma or infection. The latter was the case with me and western acupuncture certainly cured me. However, I don’t see why it wouldn’t help when the pain originates in the pudendal nerve as acupuncture acts along the whole of the nerve pathway. Worth a shot anyway as acupuncture cannot do harm (unless you have an incompetent acupuncturist). In my experience it relaxes and eases tension in the whole body.

Hi Suki

You likely already know about this but I have just learned that here in Canada you can have Amitriptyline or Gabapentin compounded into a topical cream. Apparently, the results have been very positive in terms of pain management.  It would be great to apply a cream (if it didn’t burn that area) instead of taking a pill.  Have you heard of this or tied it yourself? 

I have heard of it but I didn’t ask about it (we don’t have compounding pharmacies in the U.K.) because no I was very reticent about applying anything other than naturally oils to that area because I reacted badly to everything i’d tried (and I’d tried a lot!).

The best relief I've gotten to labial pain or vulvodynia has been bathing in Epsom Salts. You have to sit in the bath for about 20 minutes. It turns off the pain receptors. The first time I used it I thought it was a miracle, and it lasts for hours. I add coconut oil to the tub and also us coconut oil for moisturizing. The replens didn't work: the Epsom salts is the only thing that works for the searing pain.

i am pleased that you have found something that works for you but others need to take care because what works for one person can cause harm to others. Many swear by putting cider vinegar in the bath as a treatement for yeast infection. I tried that and it burnt my vulva and caused vulvodynia which took me 2 years, many treatments and a lot of money to get rid of.

Ur right coconut oil in any shape or form used anywhere on me would be disaster I am well and truly allergic to it. I have heard others say Epsom salts worked for them but we don't have a bath so will stick to my estriol cream.  I had to persevere for weeks with it but nothing makes us like what we once were and you are right we are all different. It's just good to know we are not alone in this terrible condition. I find the estriol cream is giving me wind now and it's very embarrassing because it's every time I stand up. One of my daughters said *oh mum you really need to see about that* as if I didn't know.  What next. 

I have read other people mention Epsom salts it's very difficult to know. What about the next day do you still feel it's better or when you try to sleep how does it feel. I am allergic to so many things am reluctant to try anything else. I just remember I was so bad before I got the estriol cream and got the prescription but had to wait until lunch time before I got the cream. I was so desperate and couldn't wait to use it so used my first dose about 2.30pm just waiting for instant relief.  Instead of being better it was worse I was devastated. I had to use the cream daily at that time and it didn't get one bit better until one day three weeks later I noticed a slight difference and it gradually improved from then on. I just persevere with the estriol I was finding I was up less during the night but last night I was up four times.  It's still there burning away in the background but not nearly so severe.  I hope we all get a lot better than what we all seem to be right now. 

Glad you're feeling a lot better. 

Considering the bizarrely negative reactions some of us have to things that are actually helpful to others, is it any wonder that doctors are lost when it comes to giving advice or prescribing cures? Seems we'd be as successful with witch doctors! I do continue to wonder what percentage of postmenopausal women have these problems.

I'm thinking we are experements, Dr can't even figure if I have yeast ! Now Dr away and office said tests were inconclusive, itching I had. Diflucan around and took it as prior I was on antibiotic Cipro, but the office wanted me to treat with flagel, I didn't but have appointment Friday

I found this statistic: According to a survey of women ages 40 to 84, more than half of postmenopausal women surveyed (56 percent) experienced vaginal dryness. In fact, 83 percent who experience vaginal dryness say the dryness bothers them "a little to a great deal." But I recon the percentage may be higher due to some women preferring to keep quiet about it. My GP told be vaginal dryness was inevitable and advised me to start HRT when I first entered perimenopause, she said it was best to preempt the appearance of dryness than to wait until the vagina got so dry and atrophied that it was to late to repair it with HRT. Nevertheless I managed for four years with natural oils but as soon as sex became painful (before I experienced pain on a daily basis) I started with estriol cream (well, I tried vagifem first but reacted badly to it).

Hi Epson salt was soothing , only did sitz bath though and maybe I tsp cause more was a little too much for me at first

What the heck does inconclusive mean? It should be very easy to take a high vaginal swab and culture it to see if yeast is present. You should see a specialist.

I found epsom salts too drying but use a brand with some moisturizer. The label calls for 4 cups, but I use 2. Recommendation time in bath is 245 minutes, but I only make it to 20. It's expensive but it works.

This is gynocologist, do you mean a vulva specialist? So frustrated, I'm in NJ and from NY had all the best drs don't highway drive so traveling far I need my husband to take me around, might have too though

I don't use regular Epsom salts because they made me too itchy but a brand called Dr. Teal's. The relief lasts for about six hours. It's helpful before bed, but when it wears off, the pain is still there. 2-4 cups for 20 minutes is not a time commitment I'm making at 4:am.

There's a great deal of difference between some vaginal dryness and the issues women are discussing on this site. That's the figure I'd like to know. How many women are experiencing symptoms of the magnitude that their lives are seriously affected and that only using hormones can assuage.

Doctors themselves must know how many women they treat with these problems in their own practices. I plan to ask mine when I see her again in October.

I had seen another doctor 3 years ago who prescribed Premarin which I did not want to take as I had breast cancer in my family. I was not in any discomfort, but she said I "could" develop serious problems from AV (which was causing uncomfortable exams only). She did not elaborate on what these problems would be.  To my way of thinking could did not mean I would . I deduced I could use the cream  if any problems developed. That day has come, but the message I am getting from my current doctor is things have deteriorated considerably due to the lack of estrogen.

There should be better communication from doctors on this issue. I'm sure they are a bit gun shy after promoting HRT not that long ago and having that result in some hormone caused cancers. But there should be very clear statistical information given to us that will enable us to make informed decisions.

yolanda, I have had excellent results with flagyl. I have been told that the test results for infection are negative when it has been clear to me I had an infection. Flagyl works for me and has in the past when doctors claimed there was nothing identifiable as a result of the swab. 

I have never been overly sensitive to any kind of product before. I even used Vagifem for a short time with no reaction at all. It wasn’t until all of the UTI symptoms started and the burning started that I have become terribly sensitive to everything (including Vagifem). I have yet to find any product  that I can use that doesn’t feel like a lit torch. My symptoms have worsened  in the last few weeks. I can no longer sit at all. That, in and of itself, is having a huge impact. I am now waiting for an MRI. 

You can include me in the “seriously affected” category and so far, I have been unable to find a HRT Cream that I can actually use that doesn’t cause me even more pain.  I am at a complete loss right now and so tired of hearing the doctors say “that’s not a typical response to estrogen cream”. Obviously none of those doctors are reading these posts. 

I've been doing the same.  I either use a hand bidet or spray the toilet paper with water.  I notice it stings for a while.

Beverly,

I am now receiving notifications again so I'm back!  I agree with  you about asking doctors for statistics.  The estradiol compound I'm using seems to help and I had no burning for a few days.  Yesterday, the burning came back with a vengeance.  I still say I have burning from irritation (underwear, wiping too hard) and not from VA.  I have been using the compound nine days with missing a day yesterday due to the burning.  The only cotton underwear I can find is Jockey and it has a chemical smell.  I believe it's from some kind of preservative when it is shipped overseas.  The thread is polyester which is scratchy and I burn only on one side where the underwear rubs.

Sorry I thought by Dr you meant what we call in the U.K. a General Practitioner. I would expect a gynaecologist to know if you have an infection or not.

But how do they know who is having serious issues? The stats say that: 83 percent who experience vaginal dryness say the dryness bothers them "a little to a great deal." But a little pain to one person may be a great deal of pain to another. Pain is subjective and we all have different levels of tolerance.

It is a typical response if you have vulvodynia.

Which comment are you referring to? The inability to sit or product sensitivity (or both)?  I am having so many symptoms now it has become too much to handle. I’ve been on cymbalta for a one week. No improvement in pain yet although I’ve been told it takes about 2 weeks to start working.  

I'm not a scientist or a statistician, but they could ask patients their level of discomfort from 1-5 or 1-10 and compile the results to get a clearer picture of the degree to which the problem is affecting women. Even though pain is subjective a doctor can easily determine if a patient is in extreme discomfort or mild simply by the language they use, but the rating system would be quantifiable.

Julie,

I have every symptom you addressed.  I have Vulvodynia and VA.  All topically applied estrogens, no matter what the compounded agent is, produce pain, making it unbearable to use.  The inability to sit, and often walk, is the result of intense burning at the vaginal opening.   Drs also promote using the oral meds of gabapentin, Lyrica, and cymbalta.  I've tried all three, finding gabapentin to be the best for me.  But clearly, the meds alone don't solve this problem. Using estrogen is key, but my body won't accept this key part of treatment.  

Patricia, that is exactly where I am at. And I can sense the doctors’ frustration with me in terms of my inability to use the creams. I have now tried every cream available and my pain goes from a 5 to a 10 overnight. It then takes me two days to recover. Have you tried the Estring?  That’s my last hope. 

Hi Bev, I took 1 difucan Friday and the it checked eased some, I see Dr on Friday, I'm trying to not use flagel until he checks me cause before he went on vacation he gave me a week of Cipro, so incaus he puts me on that again for the problem that he felt with Qtip an area by clit, uretha that nearly sent me off the table. I have taken flagel before it did work one time another time not so tired of guess work

lorrie, have you tried using a hair dryer on cool? It would stop any abrasion, though it may be drying. Is there anything you can use to moisturize? Have you tried olive oil?

So sorry you are extremely suffering I pray you get relief!

suki, I was told 20 years ago and again this year by two gynecologists I did not have an infection. In both cases flagyl eventually cured the problem. It was only due to my insistence that I was prescribed it. 

I believe they test for certain known bacteria. Was told by a GP years ago there is plenty of unidentified bacteria in the body and if I responded to flagyl it was because it was killing off something they didn't or couldn't test for. He thought that it was perfectly reasonable to prescribe the flagyl; the gynecologist did not.

I believe gynos are currently so focused on AV they think controlling that will cure the rest. My current gyno said "it can feel as though something is happening inside that is actually caused by what is happening outside". Despite using steroid cream and estradiol the itch did not subside until I took flagyl.  Clearly that drug does not cure AV, but it did cure the infection.

I am continuing the other meds for the AV & LS which (according to doc) is a result of too little estrogen. Am using the estradiol less frequently as it started to burn. Judging by what other women are saying here it isn't clear to me if the hormone itself causes burning or the cream it is suspended in does. Another question for my guno when I see her in October.

Thanks so much Yolanda. This condition is horrible and has affected my entire family because I have been unable to function or even participate in any meaningful way for months now and it seems to be getting worse with time instead of better. It has been very hard.  I am so thankful I found this forum!! It has helped me immensely, especially on the very bad days. 😌

I guess all your symptoms. They seem to be much too severe for VA. And VA and Vulvodynia can be linked. Have you seen my post “How I cured my vulvodynia”? I and other women have posted their stories on how they beat the condition.

If it is vulvodynia it will get worce if you don’t do something about it. Sorry if that sounds a bit blunt but such nerve conditions will not get better on their own, you Jedda to do something to calm those nerves down to Thierry normal state of activity. 

I think they use a series of face symbols e.g. 🙂 to 😫to allow for different first languages.

You are correct. Every doctor who has examined me has said the the atrophy is not severe enough to cause these symptoms. I have pain, burning, and sensitivity on the outside from the pubic bone all the way back (on the left side only).  I have severe vaginal pain, throbbing and burning at the opening and inside as well, again on the left side. I am hoping to have the MRI tomorrow. They want to rule out a trapped pudendal nerve or damage.  It sure feels like nerve pain to me. I am taking cymbalta now, have elimated soap, use unscented detergent, use only coconut oil down there, go knicker free whenever possible. I don’t sit or walk for any distance anymore.  I have read your cure post. I don’t know what else to do at this stage to help calm these nerves down. I also have all of the UTI symptoms. My GP has told me that she will be referring me to a neurologist no matter what the outcome is of the MRI.  

Julie it's Olive again.  Have you ever tried estriol on its own and using the residue of the cream stuck on the plunger of the applicator to rub well into all the other parts. I was really and truly in agony every minute of the day and hardly slept. I also had bladder issues which were unbearable. I even found it difficult to stand for any length of time without feeling my whole inside was falling out in agony.  I am still working on it. It isn't completely better But 80% better.  It takes a while ( I don't really know anything about it though) but my GP said nothing else really does any good except a form of estrogen and said estriol is very low dose and does a lot of good too.  It takes weeks to know any difference. I bought moisturisers and so on but nothing helped me except the estriol. I was on the point of giving it up too because I felt it was going nowhere I spoke to my GP at that point and he told me I could use the estriol twice weekly and I only needed to do that for one week when I suddenly felt a difference and went back to once a week. .  It is gradually getting better but not right I can still have lots of bathroom trips every night and when I waken and need the bathroom I still have lots of desperate pain I don't know if it's  in my bladder or where it is - then I go to the bathroom and hardly do anything and am up again in an hour and then the next night I am only up once. I think it's the most terrible condition/conditions to have.  My son has multiple sclerosis the very disabling form no relapses just progression and the doctor comes in here monthly and I swear every time he comes in to my son and I have only ever asked him about my condition once, he hasn't a clue what I am talking about, he has completely forgotten all my pain and suffering and I have to remind him.  I hope you find something to help you Julie I know what you are going through. 

My doc hasn't asked me to rate anything, has yours?

I agree the meds alone don’t cure it. They made my vulvodynia more bearable and helped me function on a daily basis but it wasn’t he acupuncture that got me pain free.

Hi Olive,

I am so happy to learn that you are getting some relief. I know you indicated you are not 100% yet but some relief is better than none. I cannot remember where you live but I think you are in the UK. I know you sent me the ingredients of your base (I have them written down). I am in Canada. I need to look into this further but I was under the belief that the only way to get estriol here was to have it compounded. So I went to a naturopath to have that done. The estriol is in a base that smells like black licorice and the ingredients are not marked on the tube. I tried it for 2 nights and spent the next day sitting in a tub. I have no idea what I reacted to but it was awful. I would love to try the estriol again but I need it in a different base perhaps.  What do you mean by trying it on it’s own? The only other thing I use is coconut oil. Did you begin using it twice weekly from the beginning or did you do it every night for 2 weeks then twice weekly thereafter? I have read about the importance of doing a good “estrogen load” before reducing the dose. My doctors insist I need to use it every night for 2 weeks. Maybe that’s my issue...maybe I need to start slowly. I am sorry to read about your son. It sounds as though your plate is very full so getting enough relief to allow you to function is critical. I am the primary care giver for my mom and I have kids too.  So I cannot give up until I find something that works.  Thanks for all of your support and suggestions. 

No, they haven’t. But, like I said the experiences of pain varies from person to person. When they do ask you to rate your pain (as I was asked to whenever I had a shoulder operation) it will be so that they can judge how your personal recovery is progressing, not to compare you with others. I am a researcher and, thinking about it, a better measure would be to look at the impact it has on someone’s life. A woman could rate the impact on her quality of life, ability to do certain tasks, etc.

I dispair at the medical profession’s knowledge of women’s vaginal issues!

Did you ever try using  two of the meds together?  I have read that cymbalta and Gaba can work well together for pain relief if you can tolerate the increased drowsiness. 

It sounds like you are doing the right things for treating neuropathic pain. Recovery will be slow and can take years, but it is possible. You may like to consider acupuncture - as you will see from my post, myself and others hadn’t success with this and it cannot do harm. But best to wait until after they have checked for pudendal nerve damage.

Years?! Truthful but discouraging. 

Julie, 

I was taking gabapentin alone for about two years.  Switched to a new Dr and she prescribed cymbalta along with the gabapentin.  I could only tolerate half of the required amount of cymbalta.  I started with 20 mg  once a day.  After a week I was suppose to take the other 20mg later in the day.  I just couldn't tolerate the second dose as it made me very hyper and I couldn't sleep.  Taking just the 20 mg did nothing to improve my condition, so I just continue to take gabapentin.  

I know. But it is less discouraging than some of the horoscope stories you read on the internet (my consultant told me not to read those). My consultant dermatologist (specialist in vulva pain) told me 1.5 years is about the minimum time to be pain free from vulvodynia and that is only if you do nothing to aggravate it (although there will be blips in the progression towards being pain free - I had a few of those), and try everything that is known to help. I would say I was pain free after 1.5 years, with a lot of determination, and was able to indulge in proper sex after another half a year (then I considered myself to be fully better).

Horror stories, not horoscope stories!

Julie, you need to find motivation to get better, mine was my children (then at primary school). I had to get better to support them. Staying in that much pain so that I couldn’t function on a daily basis was not an option.

Julie, 

I was also diagnosed with pudendal neuralgia because it was becoming so difficult to sit. I was then sent to see a pain management Dr.  I received a nerve block and that helped for three to four months .  Has anyone offered this to you? I also suffer from the urinary frequency, but the block doesn't address this issue. I've been told the estrogen will also help the urinary problem, but I'm in limbo bc of inability to accept estrogen intervention.  So incredibly frustrating .

Good to know. I am on 30 mg of cymbalta in the morning. It has definitely calmed the anxiety I’m having about all of this but not the pain yet. My doctor wants to double the dose in 2 weeks. I am reluctant to do so as I understand insomnia is a common side effect (and I have enough trouble sleeping as it is). I think will push for the Gabapentin. Thanks for the info. 

That made me smile. And I agree with your motivation comment.  I have a lot of reasons to be motivated but some days are unbearable. I was very reluctant to try medication but I now know I must give them a try. And acupuncture is next on my list. Thanks Suki!

I have not been diagnosed with that yet...it has only been suggested as a possibility due to the extent of my symptoms and pain. I will know more once the MRI has been done. Yikes...our situations are very similar. 

Julie,

Good luck with the MR I and please keep me posted.  I'm going in for a cysto Aug 22 to determine course of action for urinary frequency... I'm upbat least. Eight times every night so I wake up exhausted!  I'll keep you posted 

patricia, I have been wondering all along why there was no mention of nerve block. I assumed it might be because it would cause incontinence. If that is not a possible negative outcome and this is available to women it seems like a great option.

Have you had one before?  I had one in June and everything was fine. I was prescribed Mirabegron and of course, estrogen cream that I can’t use. Don’t want to jinx myself but my bladder has been unusually quiet this past week. The only change has been the addition of naproxen twice daily and the cymbalta. My family doctor told me that cymbalta helps to calm the bladder too. I don’t know if this is true but I am giving it a try.  I also go to bed each night with a hot water bottle on my stomach. Not sure if it does anything but I find it soothing. 

suki, How is it possible that a gynecologist would not be knowledgeable re vaginal issues if women's reproductive organs are their specialty? 

I think the problem is women experience menopausal issues very differently. Just reading these posts demonstrate that. If AV presents so differently in different women and women react so differently to the same medications I think doctors are often baffled. Add to that AV can cause additional problems and women respond differently to medications typically prescribed.

Fortunately some doctors have more open minds and more patience than others and are willing to work with their female patients. We need more of those.

Qi was on amitriptyline and that’s really gave me a good nights sleep. In fact, I a man still on it because after the vulvodynia came menopause symptoms including multiple night sweats, but I slept through them! I only knew I had them because they woke my hubby! My dr said amitriptyline helps with menopause symptoms so said I should stay on it (as my body had adapted to it) until those were over. I can honestly say I have never slept as well as I do on amitriptyline and that made a big difference to my recovery from vulvodynia (a good nights sleep is always beneficial to the healing process).

I live in Scotland. When I said estriol on its own I meant without any other form of moisturiser just the one cream. Not that I am suggesting you do but can you order online from Scotland or England. I had to order supplies for our son from America when there was a problem with suppliers in Scotland and I met a lovely lady where I got the supplies from we even met up on Facebook and she was so nice and one night she said to me she was going to a hockey  match and then her name and contact disappeared from her Facebook page. I don't know what had happened. She was not  the sort of person who have lost contact deliberately. I sent message to Facebook but because everything was deleted they couldn't help me. My son was a chemist working for an oil company in Canada. It was while in Canada that he lost the sight in one eye and that was the start of the most severe form of multiple sclerosis. 

Do you ever get bladder problems all connected to atrophy mine is getting better but has been really the most painful thing I have ever endured. It is still not right but the severe stinging and burning everywhere even in my bladder has almost half gone frightened to say completely gone because it is liable to come back. The other thing that I am certain has helped me is the physiotherapist told me to do strengthening exercises i.e. Putting my left hand on my right knee and pulling my muscles up then putting my right hand on my left knee and pulling up the muscles. She told me to do that 50 times on each side morning and night but for the best will in the world I haven't time to do that twice a day. It does help a lot though and you can feel your muscles strengthening. 

What I don't like the prospect of is having to take the estriol for the rest of my life. That's what my doctor told me. 

Hope you get relief soon too 

I take them too but mine was for anxiety with worry when our son took MS was told in small doses they help anxiety and they certainly helped mine and you are right they are certainly good for a good night's sleep. I don't know if I still need them but am frightened to stop them so will take them forever. I take 25mg they go right up in strength to about 200mg for depression I don't think I would ever waken up on a high dose. My son takes 30mg too for his body shaking constantly am going to see about CBD oil for him soon. 

suki, I will have to ask my GP about amitriptyline for sleep. I have tried two anti-depressants for sleep the most recent mitrazepam , and they either don't work or if I increase the dosage slightly I am far too groggy the next morning. Most things work at first, like melatonin, then my body seems to just resist them. I can fall asleep, but never sleep more than 5 hours. This has been going on for so many years it's a wonder I haven't just become ill from exhaustion. Now I often fall asleep during the day, which creates confusion trying to keep any sort of schedule.

Beverly,

I have had insomnia since I went into menopause 4-5 years ago. Prior to this craziness starting, I would use the lowest dose possible of clonazepam. It has a long 1/2 life so it would allow me to stay asleep longer. It can be addicting so i cycle on and off it as needed and that works. And I have never had a single side effect from it. If I feel groggy in the morning, a cup of coffee or tea fixes that. I’m still taking it but it is no longer as effective because of the pain I’m dealing with at night. Some other sleeping meds literally put me into a trance and I would get up at night, walk around, talk to my husband and have absolutely no recollection of it the next day. Those sleeping pills scare me. 

I think I was referring more to vulvodynia about which drs, including many gynaecologists, seem to be stumbling in the dark. I was just lucky I found a dermatologist near me who specialised in vulva pain and ran a vulva pain clinic, so her years of experience in this matter enabled her to make the best recommended treatments for each individual case. As for VA, in my experience the solution most drs/gynaes offer is HRT - topical first, then, if that doesn’t work, systemic. I have also noticed in these forums that if anyone reacts badly to topical HRT the drs say they have never seen that before. Wasn’t that the case with Julie? Same with me - vagifem made me swell up so much inside I couldn’t fit a finger or the applicator in, let alone a penis! All the drs I saw said they’d never come across that before and had no idea what caused it. I do admit that, with both vulvodynia and VA the variation is so great as is the individual response to different treatments that it is often a case of try everything and see what works for you. We need a dr who is willing to work with us in that way - sadly it is often the case that they say sorry I can’t help you then (I experienced this from a gynaecologist with my vulvodynia). We also need a dr who will listen to what we tell them - I am lucky in that my GP is of the opinion that, by my age, I know my own body best.

Apparently it is the insomnia that makes most women turn to HRT. My friends who use HRT patches said it has make an incredible difference to their quality of life in terms of getting decent sleep, curing vaginal atrophy and preventing a divorce! As for me, because I was already on the amitriptyline due to vulvodynia, menopause did not affect my sleep so all that needed treatment was the vaginal dryness. So the topical HRT was the best approach to take. Like I said, first I tried vagifem tablets (vaginal tablets) but reacted badly to those, the ovestin (estriol cream) was the next experiment and if that hadn’t worked I would have been perfectly happy with trying the skin patches (less risky than oral HRT). Luckily then ovestin did the trick. Is there any reason you won’t try HRT patches?

I will absolutely try it. It just hasn’t been offered yet.  My doctors are more concerned with the neurological component at the moment, which I understand, but they are not living with a hot fire poker between their legs. I specifically asked my GP that question this morning and she said she did not want to discuss it until we get the MRI results. 

Unless someone has experienced such pain, they don’t understand. I know. And I know that you want it to stop NOW. You want to get your life back NOW. At one point I was willing to have all that painful skin cut off. Please  do didn’t. I said to my GP why, with all the medical advancement, isn’t there some cream that will sooth it. It was then she told me about a patient who had had vulvodynia for years, went on holiday in Italy and found saginil gel which is specifically designed to reduce vulva pain by acting on the mast cell production. It was the instant miracle cure for this lady. For me it was soothing and did reduce the pain to a more manageable level from the first use. It helped me until the amitriptyline kicked in. As with most things the saginil gel has a different effect on different women. Some tell me it has no effect, others that it stings. So, as with other things, is a case of experimentation.

Olive, my bladder issues kept me running to urgent cares. I kept telling of the burning outside my vagina but they always disregarded this and gave me antibiotics. Now, I had UTIs almost constantly as a child and knew the burning/frequency was not bladder related. I decided I had vuvladynia. Uro-gyno says however it is related to my spine problems, since that is where bladder nerves are located. However, VA itself causes UTIs as well. I do the exercises too but I still urinate at least 5-6 times each night.

So if your bladder issues continue, there are a number of meds for overactive bladder. Most are antihistamines but maybe you can find one to work.

I too hope the hormones aren't life-long, but I sure would be happy to have some of my hair grow back.

Julie, my doctor would never prescribe anything addictive, no matter how effective. I mentioned Xanax as a possibility to my last doctor and you would have thought I was suggesting shooting heroin. I have a friend who worked overnights for many, many years and cannot get to sleep without a tiny bit of Klonopin. She moved to another state and cannot get her doc to agree to prescribing it. Our nationwide opioid crisis is now creating an extreme about face, even when it is nonsensical.

That is very unfortunate because there are many people who can use those medications responsibly with significant benefits. I agree that addiction can happen to anyone but slowly cycling off and on (as I do with the Klonopin) works well for me. 

Olive, are your comments in regards to the Amitriptyline?  I asked my doctor about that med because of Suki’s success and she said she would not prescribe it due to side effects. But every medication comes with some type of side effect. As for the CBD oil, I take it daily myself. There is no THC in mine so there is no “high”.  I believe it helps with inflammation and although it doesn’t help much with severe pain (as the THC is needed for that), I believe it has helped calm my bladder down. This morning, when I was chatting with my doctor about topical options for the nerve pain, she actually suggested CBD oil. She is going to look into having it compounded into a cream for me to calm the nerves down. I was very pleased and surprised to hear her to bring this up as I actually started using the CBD oil (externally) on my own just a few days ago with no negative reaction. 

Amitriptyline, nortriptyline, gabapentin all have side affects but the amount taken for neuroceptive pain is much lower than the amount that had to be taken for depression / anxiety, etc. Look at the leaflet for org any medicine - they all have side effects. Even paracetamol has side effects! The whole point is that you have to weight up pain the benefits vs the side effects. What country do you live in? In the U.K. amitriptyline is the go-to for vulvodynia. Excuse my ignorance (and I am getting lost as to who said what in this discussion) - what are CBD and THC?

*weight up the benefits vs the side effects, as with any treatment.

No problem...I am in Canada. CBD And THC are the active ingredients from the cannabis plant (now both legal in Canada). They are available in an oil so there is no smoking involved. You can ingest the oil or apply it topically. 

OH, right. I think cannabis should be available for medicinal purposes anyway.

You are in U.K. I recently the CBD oil is available here now in Scotland anyway. There were people here just recently who grew it for cancer treatment etc and they were charged and fined then just a couple of months  later it was approved. It's all upside down here at the moment better not to have any form of disability here think the powers that be  think they should all be exterminated. 

is it you who takes the amitriptyline for your volvydynia am sure that's what I have/had and was taking amitriptyline for anxiety long before that and still got the VA I was just so pained so maybe they stopped it getting worse I know they are good for anxiety and sleeping I wouldn't stop them ever.

I still swear by estriol. We are all different just good to hear what helps others and to know we are not alone.  

 

Just sent you a message but it's waiting to be moderated I wonder why? 

Hum, did you mention use of illegal drugs? You could private message me my clicking on my name.

I just want to be able to have a normal night's sleep and would try anything that would enable it that wouldn't have me doing bizarre things that I had no memory of. 

My mother was an extremely anxious person who could not function without valium. She would break then into tiny pieces and use as needed. Once she moved into assisted living the valium became an absurdly big deal. Because she had so much pain from sciatica she eventually had to have a fentanyl pain patch which had to be administered by the nurse. It was then decided all medication had to be controlled by the nurse, so after a lifetime of taking the valium when she needed it she became that much more anxious because she had no control. The medical world can cause problems instead of solving them.

They sell CBD oil and water with added CBD in Holland and Barrett, so we must be able to get it here in the U.K. I also swear by estriol cream for VA. 

I agree and I think I heard the CBD oil has been approved too 

is the CBD a spray 

I Think estriol cream is a great lifesaver although I feel it a bit iffy tonight because I have been on my feet too long today but this is the night I use it so hopefully will be ok 

did you put up with everything for a long time before you saw a GP I did and looking back I don't know how I managed. 

That's another of my replies waiting to be monitored wonder why 

olive, maybe they have to check every 10th post or something. It has never made much sense to me. We all mention brand names. How else could we share the info? They also don't like links, which can be helpful for us. I think if you ask they will say they don't want people promoting products. I did once get a PM from a woman who invented some sort of sling or something that had nothing to do with my issues, but otherwise I don't notice any products being pushed. Just women with problems trying to help other women by sharing info.

Haven't been on forum for about a week been disgusted with myself I was feeling better and up maybe once or twice for bathroom trips but recently I started to wash with the baby bath I use and find I have symptoms again of bladder problems and last night was up five times again and the night before and the feeling is there again. I am blaming the baby bath even although it declares it is properly balanced. It seems again I am going often and not large amounts. Have stopped using the baby bath but feel I am never clean and fresh and I couldn't stand for anyone to notice anything. Someone here said water and a cloth works just the same as other things but sm not so sure. What a pest this is it affects so many things. Have you or anyone else any ideas 

Yes I do to but am disgusted right now because am up again during the night five times and am blaming me washing again with baby bath I get up to the bathroom, then I need to go again in about another hour I never get a good sleep. I use the estriol cream I get two tubes every 56 days and am down to once weekly was thinking of maybe going back up to twice weekly just don't want too much estrogen getting into bloodstream. I googled funny smell in urine with vaginal atrophy when I use bathroom and got a site with loads and loads of information about urology problems along with the atrophy it was really informative but it doesn't sort me out just now am so fed up of it. 

I never have a bath now. I just shower and use organic unscented paraben and SLS free shampoo, conditioner and body wash (stuff runs down!). I never wash my vulva - I just wipe it over with coconut oil. I wash at the top of my legs (outside my outer labia) with Yes intimate wash. 

olive, I used to use a PH balanced soap until diagnosed with LS. Doctor gave me a handout from an LS specialist that said "no soap". Like you I thought I really needed to use it, but I've gotten used to doing without it. I use a lot of coconut oil and I think that helps to neutralize things and can help to keep you clean. I think suki actually uses it to clean.

I am fighting a slight infection so if I detect any odor I wash with plain water during the day. Just pour warm water while seated on the toilet. Pretty easy. We've had a warm summer so that doesn't help.

Some women have other methods, but to the same end.

Fortunately (knock on wood) I have no urinary problems. Hoping I will be spared them.

Are your problems a result of diagnosed AV?

suki, you are a font of information. Just googled unscented paraben and see there is quite an assortment of such washes to choose from. 

Yes I use Estriol cream but have urinary problems too always thinking I had UTI long before I was diagnosed with VA was always on antibiotics it's really annoying. I can't use coconut oil I am allergic to it really badly allergic I tried YES VM  too could t take it either. 

Hi Olive, Dr told me no soap just Epson salt bath or sitz but I too still Rashed with the cream he gave me on outer area. I know feels like we take one step forward and then back again with this , no more soap for me either

I use desert essence or faith in nature. It needs to be SLS free too. Sodium laureth sulphate or sodium lauryl sulphate are used to make shampoos and washes foam. THere is no reason why they should foam, they would work just as well if they didn’t foam, but people like them to so these harmful chemicals are added. SLS is actually a skin irritant. A test was done whereby they put SLS on arm skin and covered it with a waterproof dressing. After a few days when they removed the dressing the skin was red and blistered. Of course SLS is in a low concentration in shampoo and body wash, but still .... why put skin irritants in something designed to use on the skin? There are safer foam producers. Such as sodium coco sulphate (in desert essence), extracted from coconut.

One thing we all know with certainty is what might work for some of us, does not work for others. I am not using soap but I am sitting in a warm bath for literally 2 minutes each day then applying coconut oil or calendula. Sometimes I sprinkle Epson salts in the water and sometimes I don’t but helps to feel clean.  I was in a health store yesterday looking for a non soap, unscented feminine wash.  A product was recommended to me that contained calendula (which I am using as a cream to moisturize) and camomile.  I did not buy it and have forgotten the name but next time I am in there, I will look for it and pass the info on. I know you are allergic to coconut oil so maybe you should try calendula cream if you haven’t already. I find it very soothing. If you search “intimate soap calendula and camomile” online you might find a few options. The one I just found  is free from fragrance, parabens, SLS, etc. 

Camomile cream or ointment can be soothing too. I used to live in Switzerland and dr prescribed camomile cream for application to the vulva if i ever got a bit sore. They don’t sell camomile cream or ointment here in the U.K.

I wonder if applying a wet tea bag would work as a compress.