How I cured my vulvodynia
Posted , 116 users are following.
I see so many posts on here about constant or provoked vulva pain that I thought it might be useful if I explained vulvodynia and how I cured mine. Vulvodynia literally means vulvar pain and is a condition of the nerves in that area. The nerves have become hyperactive and hypersensitive due to trauma which can be chemical or physical in source or due to infection. I think mine was due to persistent thrush infection and the many remedies I tried to cure it, including home remedies such as bathing in a bath with some cider vinegar in - that made my soreness much worse (chemical trauma). Vulvodynia can cause itching, sore or burning sensation and this can be continuous or provoked (only happens when the area is touched). The nerves are so hypersensitive they register touch as pain and the usual way to diagnose it is to touch around the vulvar area with a cotton bud and where the touch registers as pain then that is the affected area. It can involve the whole of the vulvar area or can be in a horseshoe shape toward the posterior (which may also involve the perineum) or the anterior or can be offset to one side. The pain is a form of chronic neuropathic pain because it stems from nerve damage as opposed to nociceptive pain which is caused by tissue damage. Neuropathic pain can be very hard to get rid of. It took me 1.5 years of determination and the occasional disappointing set back to cure my vulvodynia. Probably more like 2 years to get back to normal.
Ok, ready for a long story about how I cured my vulvodynia:-
First I saw a gynaecologist. He took a biopsy of the painful area and confirmed no diseases or cancer. He put me on amitriptyline and steroid cream. These slowly worked for a while and made me comfortable enough to have a long overdue smear test. I had the smear test and the pain came back full force - back to square 1. By that time I had used the steroid cream for as long as is recommended and had stopped it (long term use not recommended). However, desperate to get rid of the pain I tired it again, but this time the cream stung me and made the pain worse. The gynaecologist gave me lynocaine cream to numb the area, but that stung me and made me worse. Nothing was working and in the end the gynae said that he could not cure me he could just help me managed the pain. Well, I wasn't going to put up with that for the rest of my life. So I did some investigating to find someone else who could help me and found a dermatologist consultant in Oxford who specialised in vulva pain. I also found some medication on the internet, made in Italy which is a gel is specifically for treating vulvodynia. It calms down the overactive and hypersensitive nerves. Saginil gel - you can order it direct from the suppliers, epitech, on their website. You can do this because it is not classed as a medicine because it is made of natural plant-based ingredients. It is expensive, as is the post from Italy, but I am so pleased I bought it because it was the only thing my skin could tolerate there and it did make a difference - it reduced the pain so that it was bearable and I could function better with daily life.
i saw the dermatologist and she told me all the things that she had found worked to get rid of the pain, but nerve pain is difficult to get rid of so she suggested I try them all and stick at it. i was surprised because, appears from upping the amitriptyline dose to 50-70mg a day (I was on 20), the rest of the things were what you would class alternative, or natural, cures. They were: western acupuncture, physiotherapy, chiropraction and manual desensitisation. Now, different things work for different people because there are different causes for the vulvodynia: infection, physical or chemical trauma, hormones, trapped nerve in back. I knew mine was caused by repeated and persistent thrush and the various treatments I tried to get rid of it (including cider vinegar - ouch! No!). So I didn't see a chiropractor because is didn't thing it stemmed from a pelvic nerve problem, however, from what you describe, yours might. I did do yoga exercises that free trapped pelvic nerves. I bought a book on pelvic floor exercises and did those, rather than see a physio. I did the manual desensitisation - this is where you stroke yourself very lightly in the painful area, using non-irritating lubricant (I used oil based lube by yes, or coconut oil), just once the first day. Then each day you gradually build up the strokes in number and pressure. The idea is that you are retraining the nerves to register touch as touch and not pain. So, massage yourself there just enough so as not to cause lasting pain afterwards. I built it up until I could do 100 strokes of fairly good pressure, then I moved into inserting a finger, then two, then the tip of my husband's penis and then gradually out him in a little further each time, until I could get most of him in, then starting moving with him in, again gradually building it up each time. I also found a GP that also ran a Western acupuncture clinic. Western means that they leave the meddles in and pass electricity through them. That was what really worked for me - each time I went I just got better and better. Apparently the amitriptyline and the acupuncture work well together to dampen down those hyperactive and oversensitive nerves. I upped the amitriptyline to 50mg as day, very gradually by 5mg every 1 or 2 weeks because it caused side effects so my body needed to adapt to each increase.
Finally, there are the changes to how you live. No tight clothes, no sex (until you are ready), no exercise (I gradually built that up too but walking just a short distance and gradually increasing it - never do an amount that cause she lasting pain). Go knicker free if you can - I work mainly from home so was able to go around with no knickers on and baggy jogging bottoms or a skirt. Sitting also caused problems (I work at a computer) so I got a ring shoved cushion form woman to use after they have given birth and sat in that so that there was no pressure at all on the sensitive area (dame for driving the car). Coconut oil was soothing (raw, cold pressed, organic coconut oil) so I applied that externally and internally with a clean finger after every time I went to the loo (I carried a little pot in my hand bag so I could apply it while out and about with an organic, pesticide and bleach free cotton pad). No scented products on that area, in fact I didn't wash there at all, I used coconut oil to clean the area and when showered I used organic, nasty chemical free and scent free body wash and shampoo and conditioner (because stuff runs down). I also washed my clothes in scent free, kind-to-skin laundry detergent and conditioner. Toilet paper has bleach in it, so I got some tissues that were bleach free and used those to wipe after doing a wee.
The key is to be persistent, try everything, gradually build things up, stick with what works, be determined, don't give in. The consultant dermatologist was very impressed with me because I was so determined and didn't give into urges. She said she had many women who just got fed up with how long it was taking and just went for a long walk / bike ride / horse ride or had sex and put themselves back at square one again. It does take a long time - it took me 1.5 years of all that stuff in my message above to get to being pain free. Even now, 5 years later, I still apply coconut oil after every time I go to the toilet, use tonnes of oil based lube during intercourse, go around the house wear no knickers. I don't want it to come back. I am also still on 50mg amitriptyline a day. At first I was afraid to come off it because the consultant dermatologist told me, you may be pain free, but if you come off it too soon, the pain can come back. So it is best to wait a few months after being pain free. Then menopause set in and I got hot flushes and my GP told me to stay on the amitriptyline because it helps with hot flushes. My body has adapted to it now. I hope to reduce the dose sometime (gradually, by 5mg very 2 weeks, just like I built it up). I still do pelvic floor exercises - the book I got was called 7 steps to pain-free sex by Claudia Amherd. It is mainly about vaginismus, but the exercises apply to vulvodynia too - just don't do them sitting on a juggling ball (ouch) do them standing up first, then lying down, as it advises in the book. Gradually build up the exercises, doing more and more each time. Again, don't do so much that it causes an increase in pain or lasting pain - cut back if that happens.
Also, you need to get some organic, chemical free sanitary towels for when you have your period (no tampons).
13 likes, 1041 replies
Suki_girl
Posted
I everyone, I have found a new cause of vulvodynia posted on the vulvodynia support forum - HPV. Here is what the lady posted:
"Whilst most people never know they have caught it unless they get genital warts (80% of sexually active population have contracted HPV at some point) some have a hard time fighting the virus causing inflammation of the vulval glands at the 5 oclock and 7 oclock position which is where my pain was. Lo and behold a smear test came back positive for HPV (not a strain related to cervical cancer thank god) and he advised me not to put a thing on the area. To take nortryptiline in low doses daily to act as a painkiller for nerve pain. It worked wonders- I was pain free most of the time apart from flare ups in time of stress, dehydration or illness. He advised within 8 months to a year my body will have fought off the virus and I would no longer have the inflammation. He was right, I was off the nortryptiline within 8 months and have been completely pain free for over a year and a half. "
This lady was lucky enough to see a gynaecologist who knew about this.
Galbin Suki_girl
Posted
Would regular accupuncture work? Western accupuncture is not available here.
mary421 Suki_girl
Posted
Hi Suki_girl I have been following your thread for a while, you are one smart cookie the way you have approached treatment for this ! my vulvodynia has symptoms like buzzing and crawling under the skin and nocturnal itching among others.. no burning pain. More like electric pain. I have several issues: I had a period of 1.5 years after being treated with pills where I had no pain. I then had a relapse in 2017 and restarted amitriptyline. I tried to wean myself to 40 mg and then 30 mg and then had an awful new relapse where I know had buzzing in the perineum .. awful stuff and woke me up at night.. I took some older Lyrica tablets from a GP in june 2018. I didn't know this medication had been reclassified as a class C drug although it produces no euphoria (unless you count hunger as euphoria). Anyway, long story short I am now on more than before, 50 mg amitriptyline and 150 mg Lyrica. Lyrica makes me skin numb so all good there. I plan on weaning off it as it has now been 6 months and hopefully it has done it's job of "resetting" the nervous system. I am seeing wendy Reid soon as she is the best in London. Maybe she can help.
Have tried adding yoga to my lifestyle but the exercises trigger muscle spasms in my sacrum area and seem to irritate the v. I ordered the saginil gel you talked about and it is extremely good to soothe irritation and itching !! I will order more soon
What dosage are you on and how is it going ? My understanding is that once you wean off these pills the effect should last and the pain should be gone 😃 for some reason I am a difficult patient
Suki_girl mary421
Posted
Hi Mary. I was on 50mg amitriptyline. I am weaning myself off very very slowly, 5mg reduction every month or 2 (I found that when I dropped the dose I got extreme exhaustion for a couple of weeks, so if I know I am going to be busy and need my energy I delay dropping the dose). I am now on 20mg, about to drop to 15 once my kids have finished their exams ! No return of pain or discomfort. Still doing the pelvic floor exercises.
linda41401 Suki_girl
Posted
Thats great Suki, glad you are reducing with no problems. I managed to get off Nortryptilne completely for 4 months but a few weeks ago i had a slight relapse, so went back on 10mg and now feel ok. It went within 5 days of starting meds again. I think i will stay on 10mg for a few months now, and reduce later next year.
hilde33174 Suki_girl
Posted
Hi. I have vulvodynia and I can't sit. It hurts to move because I get this kind of a soothing feeling. It hurts so badly. I read your post and I was wondering if normal acupunture is enough since you mentioned something with electronic meddle. Did you start to massage even though it hurts so much? I did that and it gor much worse. I'm desperate 😦 please someone help me
susan05495 hilde33174
Posted
hi i have you tried lidocaine ? it gives me immediate relief from the pain .
Suki_girl hilde33174
Posted
You have to use a lot of lubricant when you massage - I used coconut oil or Yes oil based lube (pure oils are good because they have no chemicals in that could irritate). When you start, just do one or two very light strokes - the idea is to do enough so as to not cause an increase in pain, a slight increase that fades rapidly is ok, but you do not want to cause a lasting increase in pain, if you do, you have done to much. It is a very slow process of gradual increase day by day (once a day). As for the acupuncture, I am not sure about traditional / oriental because I had western / medical which worked well for me. Others on this forum have tried it and I think some of them found it helped. The main thing to do is not to do anything that aggravates it i.e. pressure - so, no underpants and wear skirts / baggy jogging bottoms, get a donut cushion for sitting (round with a hole in the middle), no soap or washes on the area (only wash there with pure water). To reduce friction apply natural oil - many find coconut oil soothing. And you definitely need to be on amitriptyline - at least 75mg. If you have any questions, please private message me, - I have guided several women to becoming pain free.
hilde33174 susan05495
Posted
yes, I have tried the lidocaine. It does nothing for me. I don't know if it is because I don't apply it directly on the area. But it hurts so I can't get it in to the painful area. I can feel it all the time now. I'm scared to walk or just move because the soothing sensation can come whenever. I'm currently using 20mg sarotex and 300mg x3 neurotin. Both of them only worked well in the beginning. I started on it on friday. I read that neurotin is not as effective for vulvodynia or at least some people said that. Should I just use sarotex and go up in mg? Or should I go up in neurotin? I know I should ask my doctor about it, but he does not understand this. I feel hopeless. I was a lot better for a long time, but then I touched it and it got so much worse. The pain for me is mostly between vagina and uretha. But it hurts to pee as well so I feel like it is in the uretha opening too.
hilde33174 Suki_girl
Posted
I think I forgot to thank you for your advice. I'm going to start tomorrow. I have hope now!
hilde33174 Suki_girl
Posted
Mary421 that is exactly like my volvodynia is too. What did you do to get pain free? It even hurts just to move my body.
marina91325 Suki_girl
Posted
Girls, i have/had vulvadinia, what helped me was washing my head separately from my body and washing my body only with water i was on amitriptyline 20 mg for 4 months only. its not the end of the world, it will get better!
hilde33174 marina91325
Posted
Could you sit when you had vulvodynia? How was the pain? Did you try acupunture?
marina91325 hilde33174
Posted
hi, sorry english is not my first language, so i appologise for any mistakes in my text.
i had a terrible pain in my vulva area and clitor. and it was like that for 3 months, i visited my GP, went to A&E many times with no luck. i also had pain in my anus area as well, plus a very strong abdominal pain. at the end i had to go to a private hospital and saw a genecologist, who gave me my diagnos - vulvodinia. that time i could not sit properly or sleep, any movements were giving a very strong pain. i only could sleep in a certain position and only on the sofa. going to the toilet was very strestfull and painful, i could not even wipe myself. also it was very itchy outside my vulva, sometimes i was itching it untill it was bleading, espessially at the night time. that was very hell! it was a moment when i even wanted to have my clitor cut to reduce the pain. i had to sit only on the edge of the sofa.
my doctor said to wash my hear separately , and to wash my body just with water without any soaps and shower gels. my vulva was very red and sore. my advise is to look at your vulva and see if it is sore, if its, just wipe it with olive oil once a day after shower, try to have shower every other day, insted of every day. it will get better. my doctor prescribed me tablets and a cream to use outside of my vagina, it really helped. i am pain free now. please just follow this advice, it will go. x
marina91325 hilde33174
Posted
also the most terrible thing for me was that it all started just before my wedding!!! i was in pain during my wedding, did not have my first wedding night and my honey moon.
hilde33174 marina91325
Posted
English is not my mother tongue either. Thanks for charing. I'm so sorry to hear this. I feel your pain so badly. I have the same pain. I'm scared to move because of the sooting pain. It hurts like hell. I want to be with my boyfriend but its not possible since he leaves about 1 hour away. I don't want him to see me like this. I'm so scared that I'm gonna lose him.
How long did it take? Can you say what kind of a cream and tablets you used? I'm currently using neurotin and sarotex. It worked well the first time I tried it, but then it stopped working. I'm scared of going up in both of them if they will not work in the long run. If you could I would like to now the amount in mg that you use of the tablets. I going to talk to my doctor and check if it's okay and how much I need. I just would like to know if I'm using way too much. I don't really trust my doctor with this because he don't understand it. Thank you so much in advance!
hilde33174 marina91325
Posted
And how long did it take before you got better? He keeps asking me to meet him, but it's just too hard to go there. Having to take the train and then sit on the doughnut. I heard it could take years and I don't have years. I'm loosing my studies and my life. I'm only 19 years old.
susan05495 hilde33174
Posted
you need to get your doctor to put you on amytriptiline as soon as possible . its a great drug for nerve ending pain . I have found massaging lidocaine directly into where the nerve endings are most painful . you need lidocaine 5 % gel . it will feel very hot and then the pain goes . its kept me sane
hilde33174 susan05495
Posted
I am on amytriptiline. One of the amytriotiline in my country is called sarotex. That is the one I use now. I started on friday and it helped me the first day and then it did not do anything for me. I hurt so badly so I asked my doctor to give me something else. So I started on neurontin on monday while I used the sarotex. Those two helped me first day, but then again it stopped.. So I'm starting to go crazy. I don't understand why it does not work. I was up all night because of the pain. I need something that will keep the pain away all the time. Did this happen to anyone else? What should I do? 😦 I'm desperate, it even hurts to sit on the doughnut.
marina91325 hilde33174
Posted
hi Hilde, we tried with my husband only 5 months after the wedding, he was understanding, but i knew that i needed to get better asap. but i am 45 and it is my second marriage. the best what you can do is to change your doctor or to go privat. it is costly a little bit, but at least it will be quicker and you will have a professianal who will deal with it. plus i would suggest to see a urologist as well, i did. i feel for you as i can understand what you are going through and only a thought about it makes me shaking. please just start with washing your hair separately, and try not to touch that area. my doctor prescribed me amitriptyline 20 mg and dermovate cream to apply on the skin outside. the cream is fantastic and i am itch free only just after 3 applications! i did try lidocaine cream, but it did not work for me.
i was in terrible pain for 4 months since it started after i used internal tablet for thrush plus i had BV as well and had to take antibiotics, my vulvodinia started after that. I was very determined to rid of it so i just did not care about money, the pain was killing me, night and day, and done everything privately. i could not walk, sit, sleep, walk my dog, thinking about anything apart from my pain. even my wedding preparations did not make me happy, i thought it would be forever! there is a website... i do not remember the name, you can get this tablets online and try if your doctor does not know what to do, but the best thing is to go and see a genecologist of course. it will go, please do not panic, you just need to find a treatment which will work for you x
hilde33174 susan05495
Posted
I have lidocaine 2% gel. Do you think I should get the 5% gel as well? Does that hurt to massage it directly on to the nerves? I massage directly on it without anything on my fingers and it got much worse. Do you think I should try that or will it irritate it more? It's so hard because I'm so desperate now and I try everything. Sometimes I experiment with something I think is smart and then it turn out much worse. So I don't know were to start.
shaz21 marina91325
Posted
what cream were you prescribed? xx
marina91325 hilde33174
Posted
i started feeling better a week after stopping using soaps and washing my hair separately and taking the tablets.
start using olive oil in that area, once a day for a week. it will help your skin to heal if its sore.
i think your young man should be understanding, you should put yourself first at the moment xxx
marina91325 shaz21
Posted
hi, its dermovate 0,5%. x
marina91325 shaz21
Posted
hi, its dermovate 0,5%. x
marina91325 hilde33174
Posted
i think you should increase the dose and stop smoking, if you smoke, and less stress xxx
susan05495 marina91325
Posted
you need Lidocaine 5% . 2% will not work .
you need to be brave and put 5% on . rub it in directly on to where pain is worse . lie down and wait for the heat feeling to pass and you will feel better . i was applying 6 times a day and now down to once a day
hilde33174 marina91325
Posted
I have been to several private specialist. I have been to 3 urologists and 3 gynecologist. Non of them knows what to do. I was in narcosis because they could not examine me because of the pain. They found out I had irritated mucous membranes so I started on oversterin cream. Did you feel any pain when you took the amitriptyline? I use 20mg as well and it still hurts. The soothing is still there. How did you feel when you took those tablets? How long to the pain stopped? When were you able to sit?
hilde33174 marina91325
Posted
I do not smoke, but yeah I probably stress a lot. I'm trying to relax but its hard with this pain. Yeah, I have an appointment with my doctor tomorrow so I am going to ask him to put me on a higher dose. I don't think we have the amytriotiline in my country. It says on google that sarotex is a amytriotiline so mabye it is the same just with another name? I don't know. I heard someone on this forum used nortriptylin. Should I switch to these or stick with sarotex? I think it is the same but im not sure. Gonna ask my doctor, but you know its not easy.
hilde33174 susan05495
Posted
Okay, I will buy it tomorrow then. Were you able to sit after that? Or perhaps you were able to sit from the beginning?
hilde33174
Posted
Thanks to everyone who writes to me. It means a lot. I feel like someone finally understands.
susan05495 hilde33174
Posted
you need to increase your dose of ami to at least 100 mg . dermovate will help if tou have itch but lidocane 5 % is best for topical pain relief
hilde33174
Posted
I did a quick searching on google and found out that amytriotiline is sold as sarotex in my country. So it probably has the same ingredients just different names I guess.
hilde33174 susan05495
Posted
Yeah, I read about that but my doctor did not let me get on a higher does on the ami because of my weight I think or age. I don't know. I'm a small girl. But I am going to talk to him tomorrow about that. I will probably need to start low and work my way up to around 100 mg. Thanks for the advice! Now I know what I'm going to do tomorrow. When were you able to sit without the douhnut ring?
susan05495 hilde33174
Posted
you will need a prescription fir 5 % you can only by 2% in uk . you will have an intense feeling if heat when you apply . . it will pass within 5 mins and take pain away
susan05495 hilde33174
Posted
i found 2 % made it worse . you must use 5 % . in uk can only get on prescription from doctor . it made my life worth living again
susan05495 hilde33174
Posted
i started on ami at 10 mg and gradually increased up to 100mg over a period of time . if you can impress on doctor that your r life is not worth living with the pain . They usually give in and give you what you need . . once i started on lidocaine didnt need ring cushion . . I was applying 6 times a day and now down to once a day
susan05495 hilde33174
Posted
sarotex is ami . Stick with it and get a higher dose . get lidocaine gel 5% too
hilde33174 susan05495
Posted
Do you take all of the tablets (100mg) all at once? Or do you take some in the morning and the rest in the afternoon? Or how do you take them? I feel like with the neurontin it does not work before 3 hours after I have taken them and then they only last for 3 hours max. So it does not work really well. But I think increasing the amount of tablets gradually will help. But does that happen with the amytriptyline as well? How long does it last?
hilde33174 susan05495
Posted
Thank you this helped so much. I will ask my doctor tomorrow and start a higher dose.
Suki_girl marina91325
Posted
stress can be factor in the onset if vulvodynia - were you under stress before your wedding?
Suki_girl hilde33174
Posted
amitriptyline works for a long time, it remains in your system. i have forgotten to take my tablet occasionally but still been fine.
Suki_girl susan05495
Posted
lidocaine doesnt work for everyone. it stung me and made my vulvodynia worse.
hilde33174 Suki_girl
Posted
Do we need to go on that pill even after the pain stops? For how long? I know you are suppose to take less and less, but we won't have to take these pills for the rest of our life?
hilde33174 Suki_girl
Posted
The 2% did not sting me. It simply did not do anything at all for me so I quit. Maybe the 5% will work better. I will try it tomorrow. Since 2% did not do the job, I think the worst thing that could happen is that it does not work. But at least I tried.
hilde33174
Posted
I read a little bit on sarotex and in our law it says that people under 18 can't use it. I'm 19, but my weight is like a 16-17 old girl. So that is probably why they are holding back. I'm gonna try convince him because I need them to get healthy again. Ah, I'm scared they wont let me and I will never be pain free.
susan05495 hilde33174
Posted
you wont be able to start ami at 100 mg you will probably start at 10 mg and work up to it . you take it at night as it has a sedative affect that makes you sleep . Ami will make you gain weight but to be pain free its worth it . This will we a good thing if it keeping you awake . definitely try 5 % lidocaine it gave me my life back .
stress makes V worse . I first got it when i was planning a wedding .
Are you taking the contraceptive pill as ive just gone down the hormones route and progesterone makes it worse
marina91325 Suki_girl
Posted
hi, yes i was and i still am unfortunately. i was under a massive stress over the year, wedding was the last thing i was thinking about. unfortunately my stress did not go away and just adding up. i do take some calming tablets, but they wont solve the problem. i had to give up smoking for a while, but backto smoking again now. it is like a circle - smoking, stress, vulvadiniya, then all over again... really sad.
marina91325 hilde33174
Posted
just switch off all your emotions, i know its hard, but it will help, stress is a massive trigger.. ask for a higher dose and keep increasing it until pain free. i was taking the tabs only at the night time, they make me sleepy and no drinking. Bless you, you are too young for all of it! i do really feel for you x
marina91325 hilde33174
Posted
you know, i think there is something phycological in it...i switched off all my emotions...i had only one goal in my head to get better. it was like i instructed my brain and truly believed that it will be fixed.. maybe that attitude helped me too. i am a very stressed and emotional person. i was so scared. i became as a tiger, and said to my self, i am going to beat you and nothing can stop me. i do not know Hilde... you doing everything right, but sometimes having support and understanding helps i think. and the right attitude. i was telling myself - i will get better, i will get better...
i felt very sleepy when i took the tablets, and it was a good think, i wanted to sleep and sleep. a good sleep helps you to relax.
i think it was over a week when the pain stopped. but i was keeping taking the tablets. then one day i forgot to take them, they it was a night out and i did not take them again, so its how i stopped taking them.
i was able to sit only on the edge of the sofa in a certain position, but then slowly was making myself more comfortable .
hilde33174 marina91325
Posted
I have more hope now that I found people with the same condition. People in my country who had volvodynia and talked about it were able to sit. The pain was not like mine and I did not feel like we were on the same page. So I am so thankful for your response! I saw my doctor today and he said I can go on a higher dose. I am going to add 10mg every second week. + neurontin 300mg x3. I am going to try acupunture later today. My doctor prescribed the xylocain cream and not gel 5%. Xylocain is the new lidocain gel/cream here. Hopefully the cream is gonna work just as good as the gel. The doctor thought it was easier to use in a cream form.
I am slept a lot the first day using sarotex and neurontin, but after second use I am not that sleepy anymore. I am definitely going to stay positive now. It was so hard for so long to keep positive because every time I tried something new it did not work. So my hope was torn apart and I stopped hoping for a while since the disappointment every time was too hard to deal with.
hilde33174 susan05495
Posted
Some specialists have told me I should take a break from my p-pills, but my gynecologist told me I should not do that. I might have endometriosis as well.
marina91325 hilde33174
Posted
i am so glad, that there is some progress now. i hope it will be all sorted for you from now. i think your doctor is getting better in understanding your problem and i think you are in a good hands. less stress and more positive attitude and detormination! i know exactly how you feel. it was a moment when i wanted to have my clitor cut to reduce the pain, the pain was so bad. i did not get much support from my husband because he simply could not understand how i felt and we even distanced from each other and were sleeping in the different rooms for a long time. this condition is horrible, i was not feeling like a woman any more, it was so upsetting. i was crying when i went to see my gynecologist. i wish you all the best and do not give up, beat it instead!:) х
marina91325 hilde33174
Posted
they thought that i had endometriosis too at the beggining, because of my abdominal pain, you might better check it just in case.
hilde33174 marina91325
Posted
I have not checked it yet. My gynecologist said it is a little bit early for me to do it since that means I need a laparoscopy. The pill is enough for now, but when I want children that's when we are going to do a laparoscopy.
Your condition sounds awful. I'm so glad you are pain free. I can relate so much! You give me hope and I'm so thankful for everything you have done for me so far.
The shooting is there all the time and I hope the pills are working better when I get a higher does. I'm so scared to just move my body.
marina91325 hilde33174
Posted
you are very welcome:)
yes, your gynecologist is right. it will go, just keep increasing the dose until you feel pain free. but keep an eye on your vulva skin as well, just keep checking it, if it sore or red.
i had over dose with the painkillers once. could not stand the pain any more. its awful!
hilde33174
Posted
I tried the xylocain cream and it stung me quite a bit in the beginning and especially when I lay down. Should I still continue to use it or quit? Did it sting in the beginning for you as well susan? It feels okay now it was only in the beginning.
hilde33174 marina91325
Posted
Yeah, thanks I'm gonna do that.
Overdose 😮 how much did u take then? I feel like I take a lot already. 300mg x3 neurontin and 10mgx3 ami. He said to increase the ami with 10mg and keep the neurotin dose as it is. Neurotin is kind of like an old version of lyrica if I understood it correctly. I felt like it is a lot. Especially when you mentioned taking 150mg lyrica and I'm taking 300mg neurontin. I don't know, maybe I am just worried for no reason. It's just that he gave me too much antibiotics to begin with and that triggered vulvodynia. I asked him if he thought I got too much and he said; "not yet, don't you worry I have everything under control" . So I don't completely trust them anymore.
marina91325 hilde33174
Posted
hi, i am not sure what to say about the amount of tabs you take...only what i know that ami will help and you need to increase your dose untill you feel better and then keep taking them for awhile and then start reducing them. i never knew that you can mix ami with another tabs to be honest, but i am not a doctor...
you always can ask for a second opinion if you have doubts.
do not worry, my overdose happened before i started taking ami, it was paracetamol with ibuprofen. i was taking tonnes of them every day to reduce my pain. i did not know that time that i had vulvadiniya and needed a special treatment for it.
you are still on a very low dose of ami i think. i started with 10 mg, but then jumped to 20 mg within 2 days. 10 mg just a starting point and does not help.
susan05495 marina91325
Posted
Dont worry about ami dose um on 150 mg and have been for 10 years .. i have very few side affects and tolerate it very well . have no intention if coming off it . At thw dose i take it also works as an antidepressant which has really helped me . .I have also had no migraines on this dose
susan05495 hilde33174
Posted
xylocaine is only 2 % Lidocaine you need 5%. it will have an intense warming sensation which will disappear along with the pain . i cannot begin to stress how much 5% lidocaine has made to my life . i was lucky to have a private consultation with DR Sallie Neill . She is the leading consultant on Vulvadynia in England . She put me on ami , 5% lidocaine and also advised me to wash my vulva witj emulsifing ointment . This cleans the area , moisturises it and creates a barrier against urine when you pee. im totally pain free but had an episode 3 months ago due to stress of my mum dying . the LIDO got me through the pain and im pain free again .
susan05495 hilde33174
Posted
xylocaine is only 2% you need 5 % gel if you want to private message me i can post you a tube to try . i tried Xylocaine 25 years ago during my wedding . it did nothing
hilde33174 marina91325
Posted
Okay, good to hear. Then I will not worry about that. 😃 I know how you felt! I used a lot of opiods before I started with antidepressant medicines. I was desperate but nothing worked. I could not understand and thought it was something wrong with me. Now I know why it did not work. My pain was in my nerves and not so much in my muscles. I'm so sorry to hear about the awful things you have been through. I thought my pain was bad. So happy for you now though!
hilde33174 susan05495
Posted
Today after my acupunture I did apply the xylocain cream 5% and I don't know what it was that helped a bit, but I feel better so I'm gonna continue doing both of these things.
In my country xylocain cream comes in 5% as well. I will try to insert a picture of the one I have.
susan05495 hilde33174
Posted
hoping that as its 5 % it should help . let me know how it works out
hilde33174 susan05495
Posted
Yes, I will! I'm going to see a physiotherapist again today. I don't know if I should let her touch me because last time it got a little bit worse. However, after 3-4 days it got back to the stage it was before she massaged anything. But now I'm not at that good stage yet. So I just think it might be too soon for any massaging.. I'm just scared to be back at the extreme shooting part again. Now that acupuncture and xylocaine 5% took away the most intense shootings I don't really look forward to being back to that stage again. Also scared that the shooting won't get better after the massage since see has never had a patient with vulvodynia who could not sit. I guess I should just see how it goes today and not worry so much. It's just I'm so tired so going back a step again is not easy.
susan05495 hilde33174
Posted
i dont know anything about having massages but other people on this forum have mentioned it . i have heard that having regular orgasms can reset the nerve endings .
hilde33174 susan05495
Posted
Forgot to say, sorry for your loss and then you also got the vulvodynia back. Sounds awful. I remember just crying and it hurt down there. I can't imagine the loss of losing somebody that close. So sorry to hear. Wish you all the best.
Suki_girl susan05495
Posted
There is a therapy for vulvodynia called clitoral distraction (you are distracted from the pain by stimulation of the clitoris and orgasm), however you can only do this if the clitoris is not involved in the area of pain.
hilde33174 Suki_girl
Posted
Well, the clitoris is not the place that hurts, but if I touch it the area were my pain is hurts. My pain sits between vagina and Urinary meatus or around the Urinary meatus.
hilde33174 susan05495
Posted
What kind of emulsifing ointment did you use or is the brand not so important?
hilde33174
Posted
Thinking of getting some today since it hurts to pee.
Suki_girl hilde33174
Posted
ok, well, that may well spread to your clitoris with touch. The urinary meatus is close to the clitoris. My area of pain was posterior to the vaginal opening - the forchette skin and, at its worse, the perineum.
hilde33174 Suki_girl
Posted
Oh, I understand. I have read on a lot of forums that are in my country and most of them had it near the vaginal opening. I have vaginismus as well though. So that area is sensitive too, but I only feel it if I touch it with my fingers.
susan05495 hilde33174
Posted
any brand is fine . you can use it as a soap subsitute which is good for showering so you dont get anything on your painful areas
hilde33174 susan05495
Posted
Ok, thank you.
susan05495 hilde33174
Posted
i would consider getting a small , silicon vibrator to stimulate the clitoris and come to orgasm . This can reset the nerve endings and is a good stress reliever . if it works you could then use it as a way to be intimate with your husband and not use penetration . When i had my last attack this worked for me and made a huge difference to my husband as he felt included
hilde33174 susan05495
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Ok thanks, I will try.
Suki_girl hilde33174
Posted
Be very careful. If, as you say, touching that area hurts then stimulating it may make you much worse. That happened to me when i first got vulvodynia - any stimulation, however gentle, made my pain worse afterwards. It was only later, several months into my recovery, that i was able to indulge in clitoral distraction. I have never heard of this resetting of the nerves. The gynaechology consultant and dermatology consultant both told me that the nerves in that area need to rest, not be stimulated.
hilde33174 Suki_girl
Posted
Ok, thank you that makes sense. I touched it for a week back and it made it worse. I tried to massage it and I felt like I started from the beginning again. I will wait. When do I know I can touch it? I'm scared to make it worse that's why I did not go to the physiotherapist today.
hilde33174
Posted
Sorry, saw you said several months now.
Suki_girl hilde33174
Posted
Do you understand how to carry out manual desensitisation?
hilde33174 Suki_girl
Posted
No, I did not understand that so I did everything else. I am a little mad at myself these days because I made it worse by touching the area. I was able to walk without pain and now I'm back to stage one. It's hard to stay positive.
Suki_girl hilde33174
Posted
I am so sorry to hear that. I completely understand. At the beginning i was in so much pain i just wanted to stay in bed all say crying. Sometimes I did. But I had to get up because i had two primary school age children. I also made several mistakes and took myself back to square one - using lidocaine, using steroid cream, doing exercise, walking too far, getting a PAP smear, all made me worse. So frustrating and so demoralising. But these blips in the recovery are all part of the recovery, part of the learning process, finding out what works and doesnt work to help you. With manual desensitisation you have to start very very gently and build up very very slowly. When you begin it is just the lightest stroke, just one, with plenty of lubricant. I used coconut oil or Yes oil based lube - i could only tolerate natural oils. Do that for the first week or two, then increase to 2 gentle strokes, and so on, gradually building up the number of strokes and the pressure. You may feel some increase in pain afterwards, but it should only be a little increase which should pass after a short while. If it causes lasting pain then you are doing too much, so cut back.
hilde33174 Suki_girl
Posted
Ok, thanks. I will try that when I feel better. Right now I'm really sensitive to any touch. It was not like that before I made it worse. So it is a little bit frustrating, but I feel like the things I do help speeding up the process. How many acupuncture lessons did you have? The acupuncturist told me I should have 1-2 every week. Is that enough? She is going on vacation so I found a new acupuncturist witch do both Chinese and electro acupuncture. What is best?
Suki_girl hilde33174
Posted
Well, as you know, I am a fan of electro acupuncture, which worked really well for me. I could feel the benefit after every session. I had it every 2 weeks.
hilde33174 Suki_girl
Posted
How many did you have in one week? Is two enough? Now that you are pain free can you sit normally and everything is good again?
Suki_girl hilde33174
Posted
I had one session or acupuncture every 2 weeks.
I have been completely pain free since 2015. I can sit, wear tight jeans, do exercise, have sex, etc. Completely back to normal.
hilde33174 Suki_girl
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That's such good news. That gives me hope! So happy for you and hope that happen to me as well. Working really hard to get there.
susan05495 hilde33174
Posted
im also mostly pain free . I am walking 5 miles a day and eating healthily . mine is definitley linked to my hormones . im no longer taking progesterone and oestrogel gel twice a day. i am really lucky lidocaine works for me and has given me my life back . so now if i have a flare up i dont get stressed as that made it worse.
do you know what caused yours ?
hilde33174 susan05495
Posted
That is good to hear. I think it is all the antibiotics I took because of an uti I got. I went through so many pills. It just did not want to go away. Right after my uti disappeared I got vulvodynia. I also have vaginismus and I've heard that if you have one of them it's easier to get the other.