Please somebody help me.....i am so desperate!!!!

thank you for your reply....i saw your post and i am very happy for you that you are pain free.....i dont know if i have vulvodynia i diagnosed my self because nobody seems to understand my conditions i dont know what makes my pain flare up an i dont know what can i do to figure it out....any advise?.... its weird because i dont have pain with intercorse but my pain is constant.... although i think its an amazing feelling that you are pain free and you feel that area "normall" again!!!!

for 3 days now i am taking neurontin 300mg but i dont feel any difference....i feel desperate because only my boyfriend understand the condition and my pain.....my family believes that all these are in my head!!!! because here in greece my father was a pharmacists and never heard about a pain like that.....who nobody find anything and any medicine help me!!!

you need to try everything in my post 'how i cured my vulvodynia' - manual desensitisation , acupuncture, physio, pelvic floor exercises (get the book '7 steps to pain free sex' by Claudia Amherd)

thank you for your reply....i am so sorry that i hear you are in the same condition and in so much in pain. How long do you have that feeling and in which area? this condition its awful i know!!!!

mine started at the end of JUNE!!!

it has resolved about 90% but to get rid of all the soreness and forget about it every happened is, so far, not obtainable.

today i ordered the gel SUKI was talking about from AMAZON so hope it works.

good luck.

x

i am so happy for you that you are getting better i hope all the soreness go away.....where exactlly you feel the soreness....i feel the burning between labia minora and labia majora but most in the left area and in the left at the opening of the vagina

exactly in the same places as you describe but also at the urethra opening area which is why it can also feel like a UTI starting up.

a crazy situation which I HATE? Hope you feel better soon.

thank you so much for your advice....and i feel your pain because i am in the same situation as you... i hope you will be better soon.....anything alse that help you with the pain let me know.Have you ever do a test for ureoplasma i had ureoplasma because sometimes these bacterial make your urethra burn....i had take antibiotics and i didnt feel burn because it has gone.....but my boyfriend didnt take antibiotics and we had intercorse with out condom and i start feel exactly the same burn again maybe i have again ureoplasma because when it has gone i didint feel that burning in my urethra.....sorry for my english.....give a try.....good luck!!!!

Linda, thanks for helping me spread awareness that vulvodynia is curable. You and I are proof of that! But there are so many ladies on here with the problem, I feel overwhelmed sometimes.

thank you so much linda for your advice.....i am depressed with this situation....i am 21 and i cant do anything at all and nobody understand my pain i cant figure it out anymore. i am in an awful condition and this semptember i try to commit suicide cutting my vein in my left hand.....i know its not the way to cure my self but i felt horrible and i couldnt stand with the pain anymore....i am so afraid that the pain would never go away....sorry for my english....i feel hopeless I WANT MY LIFE BACK!!!!!!

thank you linda so much for your advice....i am so depressed i am 21 years old and i cant do anything i feel burning sensations and i cry all the time i feel so hopeless nobody understand me....i had read that some ladies take everything and didnt help them i dont want to live with these for the rest of my life....i cant stand with the pain anymore.....I WANT MY LIFE BACK!!!!! i want to be happy again go out with my friend wear my skinny jeans.....but i am so happy and "jealous" at the same time that you are pain free....enjoy your life again.....sorry for my engish....the drug that you take is pamelor??? and how can i started....because now i take neurontin gabapentin an i dont feel that this help me at all!!!

these days i had my period and i didn feel the burning sensation in my urethra but today my period stopped and these awful burning begin again!!!

Not sure about pamelor, the drug i am taking is NORTRYPTILINE? Try and get on to that one, it has done wonders for me and another lady i advised to try. PUSH for it with your GP or specialist.

Believe you will get better, that positivity helps a lot too, try to see it as an illness that you WILL get over.

GOOD LUCK

I had amitriptyline and that helped a lot.

Hi Suki, How much amytripyline were you on, i am taking 25mg per day but still a bit sore doesn't take all the pain away?

Hi georgia58031

We note from a recent post which you have made to our forum that you may be experiencing thoughts around self-harm. If we have misinterpreted your comments then we apologies for contacting you directly. But if you are having such thoughts then please note that you are not alone in this, and there are people out there that can help.

If you are having these suicidal thoughts then we strongly recommend you speak to someone who may be able to help. The Samaritans offer a safe space where you can talk openly about what you are going through. They can help you explore your options, understand your problems better, or just be there to listen.

Their contact details are on our patient information leaflet here: https://patient.info/health/dealing-with-suicidal-thoughts, which also offers lots of other advice on how you can access the help you may need.

If you are having such thoughts then please do reach out to the team at the Samaritans (or the other people detailed in our leaflet) who will understand what you're going through and will be able to help.

Kindest regards

Patient

Hi. I was on the same as you and still in pain. When i saw the consultant dermatologist who was a specialist in vulva pain she told me i needed to be on 50-75mg. You are supposed to increase the dose gradually by 10mg every 2 weeks but whenever i went up by 10mg I had severe side effects the next day (dry mouth, inability to concentrate, drowsy, feeling hungover). I solved the problem by going up by 5mg every 2 weeks (I cut the 10mg tablets in half), them i would just get constipation for a few days but that would die down. I got up to 50mg and was having acupuncture (amitriptyline and acupuncture work together very well to dampen down the overactive nerves) and the pain was gradually going away (each time i had acupuncture i noticed a jump in the pain reduction) until it became just discomfort, slight discomfort, then it was gone.

HI Georgia,

Please dont do anything silly, because this is only a temporary thing, which will go. MINE started last NOVEMBER and by MAY I was better, 6 months all told. Your life will return to normal again, and you will forget all the pain, mine seems like a distant memory now, yours will too.

Please try either Nortryptiline or as Suki said Amitryptiline, both are very similar, it comes down to the doctors preference.

My specialist preferred Nortryptiline. She didnt think Gabapentin would help.

If you are feeling really depressed, try and get counselling, as it definately helped me to put things into prospective. I also found doing a meditation CD every day helped to relax me lots. ALSO the yoga is a way of relaxing too.

Post on here if you feel bad any time, we will try and put your mind at rest as we have been there and no exactly how you are feeling, I was at my wits end with worry, thinking it would never go, but it did, and so will yours. BUT I also believe you have to try not to worry, as your mind can prolong the pain, that is where Acupuncture helped me lots too.

BE strong.

thank you linda i appreciate your help!!! i feel awful and so hopeless i cant stand with the pain no more....and i am terrified because i want this awful thing that happened to me go away!!!! i dont want to live like this anymore.....today was an awful day....i am in so much pain the hole vulva is burning!!!! i dont know what make it flare up!!! and my family dont know how to help me because in my country doctors are not familiar with this situation!!!but i am so so afraid because other women have it 10 or more years and they try everything and nothing seems to help them....i cant figure it out that i will spent my hole life in so much pain....i cry all the time....i have a counsle for my stress and my depressed but a little help nothing fascinating!!!!

I know you feel hopeless at the moment, but please dont think it will never go, I too read all the scare stories, but I think those that have had it 10 years probably arent doing all they can to help it to go. In our country too, GPs dont understand this condition either, that is why I paid to see a specialist and she knew straight away what I had and prescribed Nortryptiline for me, and once i reached 30mg, the pain began to go.

I too spent weeks in pain, vulva burning and sometimes sore, back passage also affected. The only relief i had was to lay still, it hurt to walk, hurt to sit for long, although i bought a donut cushion, with a hole in the middle to relieve the pain. I coukdnt work for several months.

Some days were worse and others just painful. are you having acupuncture, as that also helped me lots? ALSO please try yoga poses for vulvadynia, look them up on line. AND please buy a relaxation CD! it will relax you lots.

If you do all these things it will help lots. But the most important thing of all is the tablets.

You will beat it, so please dont be too upset, a young girl called KATIE has been private messaging me for a few weeks now, she too started off like you, so depressed and in pain, but now she is taking NOrtryptiline she tells me she is 70% better, so it does go.

i am so grateful beacause you give some hope....i had read all the scary stories for ladies that they had try everything medicines like yours and many other things and they didint have relief.....and i dont want to be one of them....how your pain had started....for me everything was fine and after antibiotics and other medicines.... cremes... my pain is severe .....at the beggining i had it in my urethra and also now sometimes i have burning feeling in my urethra and then the burning spead of in the whole area....some days the pain is 4-5 and sometimes 8-9 i could walk but today it was very difficult but the most strange thing is that i can have intercorse but the most ladies with the same problem as me they cant....i find sitting difficult but sometimes i feel the burning and when i lay down in my bed....its difficult to express where i feel it when i feel it and what it make it worse....its seems like my pain change places i dont know what cause it.....i sleep fine in the night but when i wake up i feel it again its very strange and thats why nobody believes me and everybody believe that is a phychosomatic pain and i need drugs for this not for the pain.....i am not crazy!!!!the only thing that i want is to get rid off pain and nobody understand that!!!!

i had read a lot stories and i saw many women have problem with vulvodynia!!!!we are in 2018 and its impossible nobody cant find what cause it and find a cure.....why nobody try to understand how awful and painful is that......why nobody understand and try to resolve this "mystery" about vulvodynia.....the doctors found ways to cure the cancer!!!! i think nobody give a s**t because it is not a deadly illness but they dont know how painful it is and how ruin our lives....ourselves!!!!!

HI Georgia

Best to try and not read to many scare stories, as many of those may not even have true vulvadynia, it may be something else. Many people wont persevere either, perhaps try drugs and because they dont work instantly they give up.

I dont know what started my vulvadynia, it sort of just came on suddenly last November, at first i thought it was cycstitus, but urine samples ruled that out, plus no infection either. Next my GP said it was hormone related and gave me HRT cream to use internally, but no relief, so that is when i decided they had no idea so asked for a specialist appointment, which they gave me, but i had to wait until MAY so i decided to pay privately to see a specialist, and i am so glad i did, as not only did i get to see her in FEBRUARY, but she also knew all about vulvadynia, and had lots of ladies she had helped. She started me straight away on Nortryptiline and said to increase as required, up to 75mg if needed but i only needed to go to 40mg as by my holiday in MAY it had gone, just 3 months after starting it. She said no one knows what triggers it, but she also told me that no way would i be like this all my life, all her women either had complete recovery or relief so that they could get on with their lives.

My pain was also up and down, but it never stopped completely ever. I too could sleep at night alright and every morning i woke up it started after a few minutes of getting up. I was too frightened to attempt intercourse at all, as I believe this could reactivate the nerves there and worsen the condition, best to let the nerves comoletely recover. My pain too would change throughout the day too. Somtimes in uretha and other times woukd move more to back passage.

Yes I can understand people thinking you are depressed and need medication for that, but what they dont understand is that you are only depressed because of the pain and not knowing what to do to get rid of it. But, I look at it this way, Nortryptiline is an anti depressant, but also helps nerve pain, so you can kill two birds with one stone, it will help the nerve pain and also your depression caused by vulvadynia, so what have you got to lose. Please make an appointment straight away and get the right tablets. Even if you have to pay, it is worth it to get rid of this awful condition.

yes it is very strange that nobody has any idea what causes this condition in this day and age, you are probably right they just dont care as its not life threatening, but in a way it is, because you cant enjoy your life any more whikst you have it. BUT, please read Sukis page and follow all she says, as thats how i cured myself. Hard work but worth it.

Georgia, unless someone has got or has had vulvodynia they will not understand how painful it is and what an impact it has on our lives. I see from your messages that you are posting late at night. You need to get some decent sleep - amitriptyline or nortriptyline will help you do that. It made a big difference to me being able to get a good night's sleep. You also need to stop reading all the horror stories online about women having it for years - like Linda says, and my consultant said, those are women who dont do anything about it or who get impatient with the slow recovery time and do something that aggravates it, like go to the gym or have sex or ride their horse. You need to listen to people like Linda and I who are now pain free. You need to focus on getting better, you need to get determined. I know that is hard, I know all you want to do is stay in bed and cry. You need to find a reason, a motivation to get better - for me it was my children (who were still at primary school) - I had to get better, I had to be able to function on a daily basis to look after them.

Don't get too angry with the medical profession - vulvodynia is a nerve condition and it is notoriously difficult to treat neuroceptive pain.

Have you read my 'how i cured my vulvodynia' post? You need to do EVERYTHING that has been found to work. First get yourself on amitriptyine or nortriptyline. You need to be on 50-75mg. With such drugs your body needs to adjust to them slowly so you are supposed to go up by 10mg every 2 weeks. I couldnt do that - everytime i went up by 10mg i got bad side effects (very dry mouth, lack of concentration, drowsyness, feeling hungover - it was dangerous to drive and i couldnt work). So i went up by 5mg every 2 weeks (i cut the 10mg tablets in half), then i just got constipation for a couple of days. You may find that, like Linda, you respond well to the drugs and don't need to get up to 50-75mg. Everyone responds differently. I know someone who is on 100mg and is still in some discomfort - she is going to try acupuncture and physiotherapy next. It takes a while for the drugs to start working, so you have to be patient. In fact you have to be patient altogether with this condition - you can get better but it takes time, progress is gradual and there will be ups and downs. I am truely amazed that Linda was pain free after 6 months, it took me 1.5 years.

You also need to try acupuncture, physiotherapy, pelvic floor exercises, yoga and manual desensitisation. For relaxation techniques and pelvic floor exercises i recommend the book '7 steps to pain free sex' by Claudia Amherd.

hi linda

i know i must do anything to get rid off that pain but i dont have the strenght to do that because nobody in my country are familiriar with this conditions and nobody know the drugs that are propriate for vulvodynia and i cant tell the doctor what he or she should give me and i dont want to start medicines like anti depressant without prescription of a doctor because are drugs and not candies to take them by my own.....but i must try everything and convince everybody about my condition!!!! i dont want to stay in bed anymore!!!!

hi suki

i know i must try everything but when i read that stories i feel more awful and hopeless because i dont want to be in this situation anymore....i know i must sleep propriate times but because i am in so much pain i stay in bed all the time and the nights i cant sleep because i make thougts that if i have it in the whole of my life....if nobody understand me and cant help me and i cry and i feel awful!!!! but i want to thank you and linda because you give me hope and strength!!!!

hi GEORGIA,

I understand your pain but the ladies who have told you their cure stories are right and you will get better. really amytriptiline is good for this and will help you feel a bit better mentally. Have you tried using cold compresses in the vulval area to help numb the pain which then helps you be able to go about daily things once again. Either try small ice wrapped in tissue or gauze, or cold small ice pack wrapped that you can also put on the area. it really helps. HOPE this is useful. good luck. you will get there.

Georgia, most drs in this country don't understand vulvodynia either - they just prescribe amitriptyine or nortriptyline and that's it. I'm just lucky that i found a consultant nearish me who knew all about it. Most women everywhere have to research it themselves and take control of their treatment. I had to find the consultant myself. The drs in your country should at least know that amitriptyline and nortriptyline are no longer used as anti depressants (there are better drugs for that now) - they are now used for neuroceptive pain.

I paid privately for my acupuncture. Can you find an acupuncturist who treats vulvodynia ? You could also get private physiotherapy (but they need to know how to treat the pelvic area).

HI georgia

Suki is right, our GPs also do not underststand Vulvadynia. And yes, you really must take control of your illness, you do have a right to ask your doctor if you can try a drug that hundreds of other women are taking for VULVADYNIA , just look up on the internet about AMATRYPTILINE and NORTRYPILINE and print off and take it to your doctor and show him or her, saying you have heard very good results with these drugs and you would like to try them too. They are not used for depression now, but mainly for nerve pain, so they work really well. If your doctor refuses then find another doctor or pay to see a private specialist, it cost me £150 but it was money well spent.

I know you feel so depressed and hopeless, I felt exactly the same, as Suki will vouch for, I was at my wits end until I found her website and chatted on line, she really helped me to try everything, I tried to do exactly as she did and I am so pleased I did as I am almost cured now, you may be lucky like me and find 40mg is enough, and within 4 months of taking it the relief was fantastic. Then the better you begin to feel, your mood changes too, until you no longer fixate 24/7 on your pain. Its easy to go to bed and cry and feel sorty for yourself, I did the same at first, but it does you absolutely no good, if anything it will make it worse, as I am sure low mood and stress makes it worse. So, tell yourself you will get better, do all you can to get the correct medication, dont spend all your day in bed, you do need to rest, but lay downststairs, take your mind off the pain by reading, watch tv, do yoga, do a relaxation CD, do manual desenitisation, anything to focus away from the pain. Talk to friends, try counselling too. You are the one in control of your body, you know what you need. Just look upon it the same as any illness such as cold, flu, it will eventually go, you wont be like this forever, please believe us.

hello ladies,

these week i saw i psychiatrist about my problem beucase nobody understand my condition and everybody says that everything is fine in that area....before my symptoms began in july i had terrible stress and i was very anxious.....in june i had some panic attacks i couldnt go out because i thougt i would pass out.... i cried all day and i was anxious all the time....i tried to overcome this situation and i thought that i did....but in the begging of the july i thougt that i have STD without any symptom that proves that but by mind stuck that i have something.....i went for STD test and everything came back negative but the doctor injured me when he examed me and i had pain in my urethra and with my throat infection and with antibiotics the problem became worse.....so my doctor believe that my pain releated with my stress and my fear.....she says that i have generalized anxiety disoster because my pain started after a horrible time for me....she says that the stress can became pain because when you are in stress the nerves and the muscles are very tight and the nerves cant send signals pain without pain.....and she think that the stress was somatomized in that area because i was anxious about STD and i use many many medicines for yeast bv and others and the area becaume very sensitive....and i had some pain their and with my stress and fear i made my pain worse because i focus there all the time.....she prescribes me zoloft and xanax and if they dont work she will prescribes me cymbalta or effexor that they are for nerve pain....o started zoloft and i will wait because these medicines need some time to work......i dont know if my pain related with my stress and i never thougt about it but i will try and see if it works!!!!

I think Vulvodynia does have a psychological / somatic element. I was under stress when my vulvodynia began. I think stress can contribute to it. I saw a psychosexual therapist. With me there were also physical contributory factors (persistent thrush, home treatments for that and hormonal factors due to onset of pre menopause). I think you have to treat all the factors to be successful in becoming pain free.

hi suki!

yeah i believe that stress can make your body pain and this is not always releated with organic problems but can cause them....as my doctor describes me the stress in our body when they dont externalized in can somatomized because when you have pain as she explain to me you are pain all the time and when i sleep i dint feel anything because my body and my mind are relaxed.....and its weird if you have an organic pain yoy feel the pain in the same spot and your pain is not at different places and different times this seems that this kind of pain is more psychosomatic.....stress and anxiety can cause sore and redness in your skin muscle spasms your nerves transport wrong singals....urinary problems ......when you have stress and some area is more sensitive than others for example vulva with persistent your mind focuses in that area and alla the stress somatized there....and for example stress can make your ph balance in your vagina more sensitive to thrush.....i didint beleive that stress can do all these things but mine started after a long period of stress and fear and with the antibiotics and thrush the ptoblem becaume more worse....but my mind make it worse....the pain is real the burning is real but and nobody says that everything is in your mind but that pain is not related with organic problems because after of several test the doctors can find anything!!!!

Always at times of stress i get thrush. Also when I have other illnesses and my immune system is overloaded.

stress related with everything and it can affect every part of our body.....we must find thing to control it.....also you should take vitamin c it can help the nerve system the immune system your skin the high pressures on the vessels and fot the presistent thrush one ore two times in the week you can try vaginal suppositories i try ecovag by frezyderm it could burn but they restore the ph balance thats why maybe and the rhefresh vaginal gel i didnt try but i will.....for now i take antibiotics for ureoplasma and i use ecovag it burns sometimes but its good for thrush that can antibiotics cause also i take probiotics capsules

you are NOT alone. im 19 and vulvodynia arised after breaking up with my cheating ex boyfriend. i have severe health anxiety and was convinced i had an std. i couldnt believe the negative tests and thought for sure i had herpes or something like hiv. i didnt eat and cried everyday. i started to get help and i do feel better. i accepted that this is not an std. dont let your worrying get the best of you. this is truly just vulvodynia. i saw a specialist and he diagnosed me. this is so scary to go through i want to give all of you a hug because i know what it feel slike to be so scared. but you are and will be ok.