How I cured my vulvodynia

In her experience, you need to stay on amitriptyline for several more months after you feel you are completely pain free then you need to come off very gradually in small amounts. She recommended I reduce the dose 5mg every month. In her experience if you come off too soon or too quickly the pain will return. As it happens, despite being pain free for about 3 years, I am still on amitriptyline because I then started getting menopause symptoms so my GP said, as my body had adapted to amitriptyline, I may as well stay on it. I slept right through the night sweats (but I know I had them because they woke my hubby up!). Once I am sure menopause is over I’ll ween myself off the amitriptyline.

Hi Suki,

Fingers crossed for you. Let me know how you get on when you start to come off them. I’ve just come back from my physio appointment and she found all of my pelvic floor muscles are overly tight, she relieved them with massage and 80% better since leaving there. I just need to try and keep them relaxed now xx

Keep with the PT! I went today and she gave me all sorts of advice for excercises to help the nerves and muscles down there as well as did manual work on the area. She said my first layer of muscle is tight so that’s part of the reason I’m still in pain and also gave me dilators to help retrain the nerves. You have to keep with it. She told me twice a week for the first month on top of exercises every day. So once a month for PT isn’t enough to help heal it. Definitely keep going at least once a week 

Lots of women have benefitted from physio. Somehow all the pelvic floor muscles can become tense and impact on the nerves, causing the vulva pain.

I did the exercises every day.

I have been going monthly to physio and just doing stretches and breathing techniques every day. I started physio in April and July I noticed significant relief until this month it has been really bad. My physio said that set backs can happen and it takes a full year to recover. Because I had a lot of sore areas yesterday when I saw her she wants me to go back in two weeks time to check progress. Good luck with your physio keep me posted 

Hi Donna,

Oh no I’m so sorry the pain has returned. Is it as bad as before? Also what did you do for it to go in the first place?

Katie

Oh, I’m sorry to hear that. You say 25 years ago. Has anything change now? E.g. you are in menopause now? That is when mine happened, just as I started premenopause.

I done absolutely nothing different for it to go away, I was just delighted to be out of dis comfort. When it came back 13 years ago, I wasn’t menopausal then, I don’t recal doing anything different for it to come back. Since I’ve been menopausal in the past 2 years I’ve noticed the flare ups are more frequent and I’m in pain etc for weeks on end, where previously it may have just been a few days days.A tip I got from the Facebook forum, was to wash the area with coconut oil instead of soap or even ph feminine wash, in the past week I’ve noticed a big difference, hoping it will keep it at bay. 

It can be hormone related. Since have vulvodynia I never wash that area, not even with plain water (wrong ph). I just wipe with coconut oil using organic I bleached cotton wool.

Not even with plain water(wrong ph), what do you mean? 

No water even in the shower?

Seeing a urologist gynecologist.

 I’m at 50mg of amitriptyline, do not have side effects, got a pudendal nerve block because the pain is so intense, still no relief.

Physical therapy once a week, working on the nerve.

On the Oxalate diet since 3 weeks.  

No UTI, no vaginal infection.

After all that, still in pain.

My vulva is itching, burning and very often red. 

Does someone have an idea what to try next.

 

Hi Suki, thanks to all your help I am now pain free, but I was wondering how you know you have been cured as you mentioned still being on Amatryptilinr.  If you have never stopped this drug, you won’t really know if you are cured or not.  I could say that on 40mg I was also completely cured as I was pain free and back to normal, but now I have reduced to 20mg I know it is not cured, it’s only being kept at bay, as occasional on 20mg I do get slight pain now and again whilst sitting too long.  I know if I reduced it to 10mg or stopped it would return, so I think unless you are off the drug completely it’s hard to know you are cured.  I am in holiday at the moment and want to go in the swimming pool but worried the chlorine will aggrevate it again, also we have bikes here to ride but again scared to attempt this so I am walking everywhere.  

The ph of tap water is 6.5-8.5. The ph of human skin is 4-5.5 (acidic). The ph of a healthy vagina is 3.8-4.5 (acidic). It takes human skin 2 hours to return to its natural ph after washing. In order to maintain a healthy and balanced vaginal flora, the normal vaginal pH level must be maintained at an optimal level of acidity, otherwise you can get yeast overgrowth or bacterial vaginosis. I never have a bath and I try to get as little water on the viva as possible. Have you tried acupuncture or manual desensitisation?

Hi Linda. I guess you are right, in a way. I am still on amitriptyline, so how do I know I will still be pain free if I come off it? However, I still consider myself cured because I am pain free. There must be lots of conditions where the cure is the stay on medication for the rest of your life. If I find that staying on amitriptyline is the only way for me to be pain free, get a decent nights sleep and function in the day, then I will stay on it. I don’t intend to stay on it - once by body had finished faffing about with menopause, I will try to reduce the dose. However, back when I was in pain, the amitriptyline made the pain more bearable and gave some a good nights sleep but it did not get rid of the pain altogether. It was only once I started acupuncture that  I felt significant reductions in the pain, session after session. 

How long after you were pain free did you start to reduce the amitriptyline? My consultant dermatologist said to wait several months after being pain free before reducing the dose, otherwise the pain will return.

Hi Suki,

I probably feel different to you about a cure, I don’t consider myself cured, just pain free using drugs, once I get to no drugs I will then consider I am cured.  To me a cure is back to normal again with no help.  I do feel good now on 20mg, and am on holiday so have been in the sea, in swimming pool, and also riding a bike which I was worried about.  I think the acupuncture was a help too but I believe the Nortryptyline was the best help for me.  I started taking Nortryptyline in February and started reducing it in May as I was completely pain free on 40mg, went to 30 and still ok, then  20 but had to return to 30, but after another couple of weeks I got to 20 again and was ok.  Once I return from holiday I will try 10mg one day and 20 the next alternative days.  If that’s ok I will try just 10mg, can always go up if no good.  I just want to get off as quick as possible as I hate the weight gain and the constipation is not nice either.  I will play it by ear.  I can understand if it helps with the menopause, I was lucky and sailed through mine with just a few hot flushes in the day, nothing at night.  

What I don’t understand is that I never had pain in my vagina, only my vulva.  Your right I checked the ph of my tap water it’s at 6.5, 7.5.

For several days I check the ph of my urine and it is also between 6 and 7.5, my vulva will always  be in contact with a liquid more alkaline.

Could it be that my vulva skin is unable to tolerate anymore the ph of my urine?

Vulvodynia typically affects only the external area, not the internal. For many women vulvodynia is aggravated by their urine. It contains other things that may aggravate. They find washing with cool water after urinating helps. I would soak some organic, unbleached, no chemical nasties toilet paper / tissue with cool water to wash off the urine then wipe with coconut oil (no ph).

i realise this contradicts my no washing the vulva, not even with water - that applied to showering. I was concerned about getting urine off gently, as it stung me.

Oh yeah, the chemicals in toilet paper can be horrible!  I hate the ones that are scented, they always set me off badly after using, really sting for hours.  Even the ones that state on the packaging "lightly scented on the core, not the paper".  Doesn't seem to make any difference, the scent gets spread throughout the layers of paper and whatever chemical they use (probably petroleum based?) still affects the paper.  And really, what a silly thing it is to do, to scent toilet paper.  Given what it is used for.

Minamii

Hi Linda, 

Thought I’d give you an update on the amitriptyline I started 30mg last night after a week on 10mg and another week on 20mg, I am still feeling burning sensations that still move around but it moves around a lot quicker before although it is not so intense. I am starting acupuncture again on Wednesday with a woman’s health acupuncturist so fingers crossed it will help. It makes me so miserable and emotional and I’m sure it does a lot of others too. Please let me know how you feel when you reduce again. Do you think the acupuncture helped you along side the medication? 

Katie x

Katie I know how miserable it makes you feel. But you are doing something about it and hopefully you should see some progress. But progress will be slow. Don’t expect any overnight miracles. I spent many months waking up every morning hoping the pain would be gone. It took me 1.5 years to be pain free and even then I was still left burning for a couple of days post sex. I’d say it was 2 years before I was back to normal.

Thanks Suki, I’ve had this for 5 years, on and off amitriptyline and gabapentin, maybe I just didn’t persevere for long enough alive tried physios, osteopaths and acupuncturists, I feel like I’m just going round and round in circles all the time. I’m actually seeing a neurologist on Monday too to see if any of this pain is related to my back. I feel like I can’t even do my job properly or have a proper relationship with my partner friends or family coz I’m just so fixated on the problem. Sorry to rant just feel so isolated with it x

I'm sorry you are feeling so isolated Katie. I can identify with that. I have struggled with this for almost10 years and have never been completely pain free in that time having tried a long list of things. Some of the things listed on this forum really haven't worked for me. Guess because the triggers are different for different women what helps is bound to be different too. When I have a bad flare up I find it hard not to feel defective, I used to feel really disgusted by myself. I am trying to be more open with friends about it as know the stigma is probably in my own head. I am finding physio is easing my symptoms, the physiotherapist thinks my pain is linked to having a hypertonic pelvic floor she thinks back pain in the past may also be down to this... I am finding some solace in knowing what may be causing it. Really hope the neurologist can help you on Monday. Good luck - let us know how you get on xxx

Thank you Rachel, my physio says the same. I come out of her clinic in less pain and then 2 days later it’s back again it’s so tiring. I don’t know what happened but in July, I had nearly 3 weeks with no pain whatsoever. I thought it had gone for good but no it came back again. I’ve ordered Saginil what Suki mentioned in her original post so will see if that helps. Good luck with your treatment I will let you know what the neurologist says. I feel we all need to help one another with this condition xx

Totally agree! It is definitely good to hear other people's experiences. Where did you order the saginil from out of interest? I have ordered it a few times and each time the order has been cancelled! xx

Hi Rachel, 

I ordered it last night from amazon x

Or ebay

Thanks, was struggling to find it in stock a few months back but will try again!

After 6 month, on  60 mg amitriptyline on pain killers because the pain is so severe and no UTI no vaginal infection, a lost of 12lbs in one month ( at 115 lbs) doing physical therapy since 6 weeks and having a nervous breakdown...

My urogyn. decides to perform a biopsy, results LICHEN SCLEROSUS ET ATROPHICUS, why was that not done in the BEGINNING.????

On a specific creme twice a day for 3 weeks...

 

Shoddy medical care. When my vulvodynia first started they took swabs, urine and blood and tested me for everything. They also took a biopsy. The tests showed no infection, the biopsy showed normal cell with a bit of inflammation. This vulvodynia was diagnosed.

‘Thus’, not ‘this’.

Hi did your doc ever give you something for vaginal dryness and did that help at all

What is your pain like because mine is all inside the vagina and some times get irritation In between my thighs a hot sensation have u had these symptoms

My problems started a year ago, because at age 61, the urogyn. said that I suffered skin atrophy and recommended the Mona Lisa treatment, that I did.  It’s a treatment of 3 every 6 weeks. I was just ok for a month after that.

Then did the urine and infection check, everything came negative. Months after months the problem came worst, at that time it was only the vulva.

Then pain started around the outside of the vulva and anus, never my thighs. I was put on 10 amitri. when up to 60 mg, by that time the pain came severe, started physio. and pain killers.

I have a 3 week treatment with ointment, after that we will evaluate the situation. If I feel better I will start lowering the amitriptyline.

Do you think the Mona Lisa treatment triggered the vulvodynia?

You know what, I am thinking the same thing, I see the urogyn. tomorrow, all see what he says.

I live in the US, went on the web, re this skin disorder I read that the Mona Lisa is recommended. I’ll see what he thinks, I really think he is a very qualified doctor.  The first time I meet he told me very clearly that this is

a trial and error situation. And that is what I’m reading from all of you ladies 

also.  I think looking back,  when I meet him for the first time, he should have done  the urine sample, vaginal test and biopsy, month swab first.

It is what it is.  Although I think the Mona Lisa was a big improvement for the vagina.

Hi Katie

glad to hear you are gradually upping your dosage of Amitriptyline, as I said, I didn’t really feel the relief until I was on 40mg of Nortryptyline which is a similar drug.  I am sure once you reach 40 or even 50 and start the acupuncture too you will be well on your way to recovery.  I know I felt really depressed with the Vulvadynia too.  Last night I reduced again from 20mg to 10mg one day and 20mg the next alternating which I will do for a couple of weeks and if all goes well I will then reduce to 10mg each night.  I have been absolutely fine on 20mg for a few weeks now.  I went on holiday for 3 weeks and went in the sea, no affects, also ate a very varied diet, no affects, so I am pleased.  Once I stop all medication I shall consider myself well and truly cured, but still using tablets to keep it at bay.

i do think the acupuncture helped to a certain extent but the best help was definitely the tablets.  Keep persevering and you will get better, just believe it.

Hi Linda,

Thank you for your reply, it’s good to know how your getting on I’m so happy for you as you’ve come along way from 40mg I’m keeping everything crossed for you that it stays away for good. I’m on 30mg now and can finally say that It’s the best I’ve felt in a long time, it’s nice to be able to function properly and start enjoying life again without spending my time crying and feeling depressed. I still might up it to 40mg so then I might not feel anything at all. At the moment I’m still feeling little twinges here and there but I have so much relief compared to a few weeks ago. Please keep me updated on how you get on when you reduce again. Good luck xx

Hi Katie

i am so happy for you that you are feeling relief on 30mg.  If I were you I would go up to 40mg so that you are completely pain free, and stay on it for a good while, until your nerves all calm down and your brain forgets the pain.  I had a few twinges when on 30mg but as soon as I did 40mg I was absolutely pain free, it’s worth the extra 10mg.  Are you getting any constipated with higher dose, if so just take a very mild laxative.  The dry mouth does gradually go too.  Hopefully you won’t put on too much weight, if you eat carefully.  I still feel ok on 10 one day and 20 the next so will reduce in about another fortnight if I feel ok.  We will definitely beat this awful thing.  Keep me updated xx

Hi Linda, 

Thanks for your reply, you are doing so well and it’s giving me some hope that I can eventually get to where you are. I have been a little constipated but I take Aloe Vera Tablets which help and definitely trying to watch my weight. Please let me know how you get on when you reduce again and i’ll Update you with my progress too. Xx

Hi Sun I I went to go today and she has said try sudocream. Has anyone ever tried this. She didn't want to give me amtrupuline because I take citlopram which is also an anti depressants and they not good to take for the heart. I'm going back in a couple of weeks should try the cream

Sorry Suki I meant I went docs today

Hum, I have never very heard of anyone else using sudocrem for vulvodynia. It is used for injuries such as grazes, cuts or burns. I can’t see that it would help dampen down nerve overactivity. Odd one. Have you ride saginil gel? That is specifically designed to target the overreaction of nerve cells in the vulva area? Have you tried acupuncture as an alternative to amitriptyline for acting on the nerves internally?

I meant tried saginil gel!

No but I will look to get it nothing mentioned about acupuncture

Ps doctor also said use dermol 500 wash

Where do u apply this gel just around the vagina area ?

I'm.wondering now if she has said use sudocream for my groin area as that is also sensitive. To be honest the whole area is can this happen. I'm all new this and have so many question s

You apply saginil gel to the area that’s is in pain. My GP recommended it because one of her patients who had had vulvodynia for many years happened to come across it when holidaying in Italy and said it was her miracle cure. For me it did help but didn’t cure completely. Acupuncture was recommended to me by my consultant dermatologist who runs a vulva pain clinic and that was one of the things that has been successful for those who attended the clinic. So, in her experience thee were the things that worked: amitriptyline (50-75mg); acupuncture; physio and manual desensitisation. Some things work better than others for different people, depending on the cause of the vulvodynia, however, because it is not really possible to know what will work best for you she said she recommends trying everything, which I did and gradually, over about 1.5 years, I got better.

Hi Rachel,

Did you get the Saginil Gel in the end? If so how is it? My order got cancelled with Amazon so going to get it from EBay! I must say, I’m a bit worried about trying it incase it makes things worse. A lot of my pain is around the opening/internal so will try and find out if it can be used in those areas befor I try it out. X

You can get saginil ovules for internal use.

Hi Katie

I had my order cancelled too... mine was on eBay not amazon... annoying!  Let me know if you manage to make a successful order anywhere and I’ll do the same!

X

You should be able to buy it direct from the manufacturer at shop.epitech.it

You pay using PayPal. You must remember to change the shipping address to United Kingdom and also in the country section of your billing/contact details before you fill in your address.

Sorry, I meant you need to change the country to United Kingdom in the ‘calculate shipping price’ bit as well as in the billing/contact details before you fill in your address.

I see that, on Amazon and eBay the saginil gel is still sold in a pump action tube, but it is not longer sold in that container - if you look at the epitech online shop, it is now sold in a standard squeeze tube. Perhaps that is why you’re orders were cancelled?

Thanks, that’s really helpful. Didn’t come across the direct website when googling! 

Hi Rachel,

Did you have any luck ordering saginil? i was able to order it from EBAY. Its being delivered on Monday. Also having Acupuncture and on 40mg Amitriptyline which im having alot of good days but still some bad so will give it another week and then might increase to 50mg. I'll let you know how i get on with Saginil although i must say i am nervous and worried about it making things worse but will start with a small area.

Katie xx

Katie, i know exactly how you feel. Steriod cream made me worse, lidocaine made me worse. The only things i could stand on there were natural oils. i bought the saginil gel on the recommendation of my gp. it stayed in my drawer for a month before i plucked up the courage to try it. Thankfully, it didnt made me worse but reduced the pain.

Hi Katie

I ordered it directly and it came within two days in a massive box!! have been using it for 4 days, first two it seemed to really help but since yesterday have been feeling quite itchy. Not sure whether to stop or keep going with it... it doesnt burn or sting at all when you apply it. definitely not like lidocaine xx

Thanks Suki i will give it a try. i was doing really well at the beginning of the week but since i had acupuncture on wednesday the pain has flared again. x

Hi Rachel,

oh no! Only you know whether to carry on or not. However it might not be a bad thing as a cut itches when its getting better so it could be a similar thing. Ive had a set back and have felt worse after having acupuncture but im hoping its just getting worse before it gets better. Its so frustrating. Let me know if you carry on with the cream or not keeping fingers crossed for you x

Sorry to hear you've had a set back Katie. It can be so frustrating 😦, bet acupuncture doesn't come cheap either... are you going to keep trying with it? i figure now i've spent £30 on a tube of saginel i may as well keep going with it and give it a proper shot... it really seemed to help for first few days!!

I find it really hard to isolate triggers when i have a flare up. Have had a really busy week at work and feeling quite hormonal, have also been cycling to work (saddle doesn't put direct pressure on my areas which get painful and normally ok) and because the going had been so good even wore skinny jeans, so all those things could be responsible! its such a hassle and can be so demoralising... good luck with the saginel, hope it helps xx

my acupuncturist warned me that many people feel worce before they feel better with acupuncture but that never happened with me. i just felt progressively better. who are you seeing? are they accredited? Where did they put the needles?

Hi Rachel,

Im going to carry on with the acupuncture and see how I go with it. Yes the saginil was not cheap was it, its good that it started to help. I also find it hard to know what triggers it too, i was pain free for three weeks in july then bang it came back again but i still get the odd days with no pain but i never know when this is going to happen, it always seems to be worse before my period and then it calms right down during my period. Skinny jeans aren't good but they dont hurt me any more than i already am however it provably wont give the nerves chance to settle either. Thank you for your reply. Please let me know how you get on with the saginil and i hope the itching stops xx

Hi Suki,

I am seeing Tina Noel - Acupuncture she has a website. she did warn me that i might feel worse before better. She put one needle inbetween my eyebrows and one in each wrist and one below the belly button. she left these ones in for a while and twiddled them until i felt a twinge. she then put one in each inside of my knee and shins and feet she pulled twiddled and pulled these ones straight out. such weird sensations when i had it done. im due to go back wednesday so will see what happens. x