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
poka023 Suki_girl
Posted
Dear Suki_girl and everyone on this page,
i really want to thank everyone here for the information they are giving. it's really helpful psychologically and physically! I hope everyone is in the process of healing.
I wanted to ask some questions because at this point, my diagnosis is a bit lost between lichen sclerosus and vulvodynia. a doctor took a biopsy and it showed "non-specific inflammation" but no lichen sclerosus. the doctor said that it might still be an early phase lichen sclerosus or that because i was already using the steriod cream to calm my symptoms, this messed up the result and made it look like it's not lichen even though it is. my story started with fungal infections which developed into episodes of symptoms without a fungal infection (verified by a swab). the symptoms at this point are mainly a burning sensation on my vulva with a stinging feeling that comes and goes. sometimes the area turns a bit red but not drastically. also there is no intense itchiness (maybe a mild one every once in a while but also not drastic) . sometimes the perineal area also feels very tender and sensitive. i have used alocom cream (potent steroid) for three weeks everyday (to stop the inflammation observed in the biopsy) then dermovate cream (highly potent steroid) for 2 weeks every other day and now i`m on dermovate once every 3 days. I'm starting to see white spoting on my vulvar skin (where I mainly apply the steroid cream). and also i don't feel that the steroid cream is doing anything 😕
my questions are:
my burning sensation and sensitivity increase through out the day. in the morning, i'm more or less fine and it goes worse until the evening where i have a strong burning sensation and high sensitivity. does anyone have such a pattern of pain?
did anyone notice white spotting on their skin after using the steroid cream for long? because apparently white spots could be either from the steroid cream or a symptom of lichen sclerosus. also, a question for people who has concomitant lichen sclerosus, are the symptoms you have limited to the white spots you have? because in my case the symptoms are not linked to the white spots.
thank you in advance for your replies 😃
Suki_girl poka023
Posted
Hi Poka. Your case seems to be exactly the same as mine. For me, vulvodynia started as repeated and persistent fungal infections (thrush) which at some unknown point stopped even though I was still experiencing the burning/stinging sensation. My biopsy also showed cell inflammation, which my gynae said is normal with vulvodynia and I was given steroid creams which helped for a while but cannot be used long term. The skin there was also reddened. I stopped using the cream for a while when I felt a little better but when I got worse following a smear test I tried using the steroid cream again and it made me even worse
It appears I developed a sensitivity to the steroid cream which can happen with prolonged use - beware. My pain was also less in the morning and got worse over the day, which my gynae said was to be expected because the nerves are over sensitive in the vulva area so as you move around during the day or put any pressure on the area the nerves are going to become over stimulated. I tried to move as little as possible!
Finally, I too got white spots all over that area which turned out to be thrush. Steroid creams can cause thrush. The spots grew in size until they joined up and I had a full coating of white cottage cheese which I could wipe off revealing raw, red, sore skin underneath.
poka023 Suki_girl
Posted
Dear Suki_girl,
thank you for replying 😃
I'm a bit relieved now knowing that an inflammation can appear in the biopsy and still be considered vulvodynia. in my case, the steroid cream helped in the beginning but eventually didn't do anything anymore. maybe because in the beginning it was caused by both inflammation and nerve pain while now it's mainly nerve pain. i actually stopped it this week to see if my symptoms will come back worse. it's also relieving to know that other people diagnosed with vulvodynia also experience the pattern of worse symptoms in the evening. unfortunately, my doctor doesn't know these stuff and because of the inflammation in the biopsy, she seems to exclude vulvodynia at this point.
I tried the coconut oil and I also find it helpful because it minimises the friction.
thank you and everyone on this page. I found several of the advices given here to be helpful!
poka023 Suki_girl
Posted
i forgot to ask you, for how long did you use saginil gel? and when you stopped using it, did the symptoms get worse again? I'm asking this because i would like to know if its effect is mainly temporary to minimise the symptoms (like lidocaine for instance) or does it have an actual therapeutic effect?
Suki_girl poka023
Posted
I used saginil gel for many months. I have o idea if the pain may have come back when I stopped using it because I was doing so many things concurrently (amitriptyline, manual desensitisation, acupuncture , pelvic floor exercises, yoga stretches and saginil gel). All I knew was that I was getting steadily better so I just carried on doing all those things. I didn't care which thing or combination of things was working ... it didn't matter because I was getting better.
poka023 Suki_girl
Posted
yes i see your point and it makes sense indeed 😃
thank you again for writing about your experience. A lot of women have benefited including me!
poka023 Suki_girl
Posted
Dear Suki_girl
i wanted to give a general update about my situation. it could help other people navigate through their treatment plan 😃
I finally found a good doctor who asked a lot of questions and did a physical examination. he diagnosed me with vulvodynia. he prescribed me Nortriptyline. starting from 10 mg and to increase it every week by 10 mg until I reach 50 mg and then we re-evaluate. when i started to take it, i was already on my third week of using gabapentin cream 8%. after a week of using both, I started to feel slightly better. so I'm hoping that with time and increasing the dose of Nortriptyline, I will become better. he told me not to do physiotherapy for now because such manipulation could cause pain. but I'm still doing the yoga poses you recommended. I will keep updating my status as time goes by. I hope everyone is doing better and better 😃
you mentioned that for you it also started with fungal infections. i was taking fluconazole 200mg on a weekly basis to prevent it from happening. however, when I started Nortriptyline, i had to stop the oral fluconazole because apparently they're contraindicated. less than 10 days after i stopped the fluconazole, i got white spots on the skin which grew bigger after a day so i used a local miconazole ovule and cream which seemed to make them disappear. but since i can't take fluconazole orally, and topical treatments irritate the area, i was wondering what did you do during the time you were taking nortriptyline to prevent fungal infections from happening again. did you just adjust your diet? or did you do something else?
thanks again for replying to me and everyone else. most people wouldn't put that much effort in helping others specially after they're already better!!! thank you 😃
sarah1212 poka023
Posted
What is the difference between amitriptyline and nortriptyline? I know people get prescribed the two for this type of pain. I'm on amitriptyline..
poka023 sarah1212
Posted
hey Sarah,
both medication belong to the class "tricyclic antidepressant". however, doctors prefer to prescribe amitriptyline when the patient is also suffering from lack of sleep (whether it's due to being anxious or due to a nightly itchiness) because the sedating side effect is then desirable. Nortiptyline on the other hand is considered to cause less side effects including less sedating effect so it's usually prescribed when the patient doesn't mention having any problems going to sleep.
Suki_girl poka023
Edited
I was on amitriptyline. I don't think it is contraindicated with fluconazole. If it is, the consultant obviously wasnt concerned because she prescribed 100mg fluconazole oral tablets for a week for when I got thrush, because, with me, it was particularly stubborn to get rid of. But I did change the foods I ate. I also took lots of natural anti fungal supplements (pro and pre biotics, garlic, rosemary, thyme, oregano oil, ginger, resveratrol, etc.). Over time my thrush infections became less and less frequent then non-existent.
For the food, I missed out all sugars (including naturally occurring e.g. fruit) and carbs for 2 weeks. This causes yeast die off (yeast feeds on sugar, so you are starving it) which produces toxins that can make you feel unwell so you need to take milk thistle at the same time to combat this. After 2 weeks you can gradually reintroduce carbs and naturally occurring sugars. I never did eat any foods with added sugar again because, if I did, I got thrush.
Have you tried acupuncture?
poka023 Suki_girl
Posted
Hey everyone,
just a quick update of what happened with me since the last reply. I was increasing the Nortriptyline to reach 50 mg. only after reaching the 50 mg in 2 to 3 weeks that i started to feel the benefit of it. i kept using the gabapentin cream of 8% 3 times a day.
I should mention that i had an intense side effect of constipation. i wouldn't go to the toilet for 4 even 5 days sometimes! i started to use the senna makki extract which helped but it's one of those medication that you shouldn't use for long because you become dependant on it to go to the toilet. so I switched to Molaxole (which is basically a mix of salts that makes the faecal mass more liquidy so it's easier to pass). i tried using it in different ways. using 1 pack 3 times a day wasn't working. it worked when I used 2 packs together before going to sleep. I saw my doctor for a check up. he did the cotton pressure testing (where he basically applies pressure on several points and you have to give him a score of pain.My scores were considerably lower but not yet zero. nevertheless, I am very happy because my body is responding well. since I told him that the gabapentin cream is helping, he increased the concentration to 20%. I only use it once a day in the morning and sometimes forget to use it (which indicates that the pain is not severe anymore 😃. I started to do sport but I avoid movement which will cause friction to the area down there. I should also mention that before I found this doctor, I tried every possible diet/dietary modifications but it didn't help with my case. if you have any questions, please send me a private msg or even write a reply here!
Suki_girl poka023
Posted
Hi Poka023. I am so pleased that you have made such good progress. I was on amitriptyline and didn't feel any benefit until I got up to 50mg. I also suffered from constipation whenever I increased the dose (at one point I had vulvodynia and haemorrhoids), but that side effect would go away after a couple of weeks. I have never heard of gabapentin cream - what country do you live in? I am in the UK.
poka023 Suki_girl
Posted
i live in Belgium. the gabapentin cream is not commercially available. Gabapentin is usually given orally for epilepsy but it is also the last resort that doctors go to (in Belgium at least) for neuropathic pain (such as vulvodynia) when none of the other medications has helped. of course then it would be given orally with quite a high dose. but since it can be made into a cream, in Belgium, almost all the doctors i saw suggested starting with 4% gabapentin cream. but i kept looking for a doctor who is more invested in the treatment than just giving me a local cream because the 4% was not doing anything and my level of pain was quite high. if anyone is in Belgium and is struggling to find a good doctor, PM me to give you my doctor's name because he's a very good doctor. concerning the constipation, I should mention that i used to get constipated often, even before starting with this medication so i already don't have the most active bowl movement. but indeed, with time, i learned ways to go around it. hopefully, the next time i update my story, you will even hear a better news from me 😃
I'm updating my story along the way because to be honest, the only thing that gave me hope through out the first 7 months, was Suki_girl's post. other than that, it was all depressing internet articles and useless doctor visits. so I think it would be beneficial for other patients to see that it's not that depressing and IT CAN BE TREATED. you just need to find a good doctor and persevere and be as patient as you can because most doctors are not very well educated about this. so unfortunately, until you find a good doctor, you need to count on yourself and people around you who you trust and feel comfortable with. and good luck for everyone!
how is it for you Suki_girl? is it all still fine? were you able to stop the medication?
Suki_girl poka023
Posted
Yes, I am still pain free. I got down to 10mg amitriptyline but got rheumatoid arthritis and went back up to 20mg to help me sleep at night.
sarah1212 Suki_girl
Edited
I started suffering with this after a yeast infection. i still felt uncomfortable even after it was gone. ive had this for 5 months. ive gotten so many swabs and everything is negative. my gyno doesnt know what wrong with me. in the begining my vagina just felt numb. it started getting very bad in january. im in pain 24/7. burning, stinging, tingling, numbness, shooting sensation. im scared im gonna suffer this my whole life. so many forums say this will be chronic. ive tried acupuncture, it has kinda helped. im on 20 mg anthrypline. it has somewhat helped but im getting impatient. im just scared it wont fully go away. no one is helping and this is the only hope i have recieved in a while. i dont know if its nerves related or muscle related. please help and let me know what helped you guys.
Suki_girl sarah1212
Posted
my vulvodynia also started with persistent and repeated yeast infections which leaves the nerves over active and over sensitive. Each time I had acupuncture I felt a little better but it took a year of fortnightly acu sessions to take me back to nearly normal ( no pain on a daily basis but pain with intercourse). It was another 6 months before I could have pain free sex. 20mg of amitriptyline, you need to be on 50-70mg. Finally you need to be patient, it takes a long time to return the nerves to normal. 1.5 years is about the shortest time . Are you also doing pelvic floor exercises? And manual desensitisation to retrain the nerves?
sarah1212 Suki_girl
Posted
hello suki,
i actually just got an appointment with a physiotherapist who specializes in pelvic pain. i will begin doing that soon. and for manual desensitization i havent done that yet just because im scared it will irritate me more. but if that has worked for you i will try it. my gyno gave me a numbing cream which i started applying last night. it has actually helped a lot. i will be using that for 2 months. he told me to massage the affected area so i guess in a way its manual desensitisation. my pain started in a localized area. it was 12 o clock of the vaginal opening. then it spread to everywhere in my vagina. but acupuncuture helped bring it back to just the localized area. so it only hurts there now. im wondering if i have an inflamed nerve in that area or something. if so, would that go away if i try all these remedies? im just feeling quite hopeless and it would really bring me hope if you can say this will go away. i dont mind being patient i just want to be pain free again some day. i will not allow myself to have this pain chronically. it is torture... i really feel for all the woman who have experienced this.
Suki_girl sarah1212
Posted
I was exactly the same. It started as a small patch to the rear of the vaginal opening then spread (in my case it spread to a horseshoe shape and also back towards the anus). Like you, acupuncture gradually reduced the size of the painful area. Perhaps if acu helped you, you should continue with it like I did until the pain is completely gone. What about increasing the amitriptyline? I am absolutely certain that, like me, you will be pain free one day because, like me, you are determined and you are trying everything. I have been pain free and able to have sex normally for around 6 years now. I can wear tight jeans and sit without a special cushion. I came off amitriptyline and was still fine.
sarah1212 Suki_girl
Posted
thats great to hear suki, i was afraid that when i get better and were to come off the amitriptyline, the pain would return. im glad to hear that i can relate to you with where youve experienced pain. i will gradually increase the dosage. im going to up my dosage to 25mg until i get to 50 or 70. i'm also continuing acupuncture (i go once a weak). i will begin physiotherapy and up my meds soon. i will also continue using my cream. i just got back from acupuncture and feel a lot better. i would say that has helped me the most out of everything. im glad you went back to fully being able to have sex. it has really been a difficult time for intercourse for me and my partner. i want to wait until im fully better to engage in anything like that. thank you for the support suki. please let me know if there is anything else that you tried which can help me.
sarah1212
Posted
also did you feel tingling and pins and needles on the inside of your thigh near the vaginal area? sometimes i can feel it on my tailbone area. did you also experience anything like this? this is what makes me believe its for sure nerve related.
Suki_girl sarah1212
Posted
I found that if I increased the ami dose by 10mg I would get a dry mouth, feel hungover in the morning and get bad constipation. So I increased it my 5mg (cutting the 10mg in half) every 2 weeks. Once you are completely pain free and back to normal it is important not to start weaning yourself off the ami too soon or the pain can return. I was advised to stay on in an extra 3 months but I actually stayed on the full dose (50mg) for an additional year then very very gradually reduced the dose by 5mg every month.
Suki_girl sarah1212
Posted
No, I didn't get that, but I know others do. Good idea to see a pelvic pain physio for that.
sarah1212 Suki_girl
Posted
thank you for the tips suki !!
i will keep updating my progress. much love.
sarah1212 Suki_girl
Posted
hey suki,
after about almost a week of using hydrocortisone 1% cream (anti-itch, anti -inflammatory cream), ive noticed the painful area which is 12 oclock of the vaginal opening has changed in shape. it has gone down a lot. i didnt even know it was inflammed. when i had my yeast infection i noticed that this affected area was very inflammed and red. after my yeast infection had went away, it still looked inflamed but since my yeast infection was gone i just made myself believe that my vagina had always looked like that. my gyno never seemed to say anything looked wrong so i just went with it. that is why i am starting to believe that this inflammation has began my vulvodynia. the inflammed area still hasnt fully gone down tho.. i am wondering why it hasnt gone down since october if its just an inflammation. do you have any knowledge on this? on the bright side i am not in immense pain as of now, it is mild. but i strongly believe this is because i am using numbing cream (xylocaine 5%) im using hydrocortisone and xylocaine together. do you think this is a good idea? it does give me relief but im worried that im just upsetting the nerves even more... on the long run. do you have any tips on what i should do?
Suki_girl sarah1212
Posted
If those creams are giving you relief then use them. Take care with the hydrocortisone cream because it is only intended for short term use (6 weeks? I can't remember), any longer and you can become sensitized to it (which happened to me). It also thins the skin and causes scarring like stretch marks, although I was told by my dermatology consultant that that only applies to normal skin not the type of skin down there. However, I have red striations on the skin to the rear of my vaginal opening that I don't think I used to have and it can tear in these places during sex. I am convinced that my vulva was inflamed and red when I had vulvodynia. In fact the whole area was puffed up including my outer labia and no dr could tell me why. If I look at myself down there now it is a pale pink and not all puffy. I believe the persistent thrush triggered an out of control inflammatory response which in turn aggravates the nerves causing vulvodynia. I could not use numbing cream, it stung me and made me worse. I found saginil gel very soothing - it acts on the skin cells to reduce the inflammatory response.
sarah1212 Suki_girl
Posted
I definitely can relate to what you are saying. My whole vulva and vaginal area is red and puffy looking. I remember it to be a pale pink colour prior to my vulvodynia. this was the normal colour of it for me. This is what I also think has caused my vulvodynia (some sort of inflammation and irritation) causing its reddish colour...which i believe is the aftermath to my yeast infection. i can definitely say i have improved though. the only symptom i have for now is a warm feeling in the sensitized area (not a burning feeling though). this is what has made me believe i am on my route of healing. im gonna keep continuing everything we have discussed though, until i am fully better.
sarah1212 Suki_girl
Posted
where can i find this saginil cream suki? i checked my local drug mart, they didnt have it. i checked amazon and it seems like they are out of stock....but ill keep looking. hopefully you can help me on where to find the cream. id rather use a natural bases cream than chemicals
Suki_girl sarah1212
Posted
Yes, and everyone kept telling me it looked normal and it was stress related. Finally I got a biopsy which showed inflammation which proved what I had been saying all along that it was something physical.
Just keep going, stay determined and stay positive that you will beat this. There may be blips where something aggravates the nerves and makes it a bit worse again for a while but just keep doing what you have been doing and you will get there. Can I ask - are you getting western (medical) acupuncture or oriental (traditional) acupuncture?
Suki_girl sarah1212
Posted
I had to buy it and get it imported from the manufacturer in Italy. It can be done because it is classed as a food supplement not a drug (being made of natural plant extracts). They have an online shop. Your use of the term "drugs mart" makes me think you are in the USA - are you? I don't think they export to there. I am in the UK. I can give you the online shop url but it will have to be in a private message because admin delete messages with web addresses on this forum.
sarah1212 Suki_girl
Posted
I'm Canadian! I would really appreciate if you could give me the url privately on message, I cant find it anywhere else! I am also having western acupuncture done. I didnt know there was a difference between the 2 so i googled it and i believe western is the one im having.. I told my acupuncture lady where i am experiencing pain and she puts the needles in where the nerves for that specific area would be. in my case she puts the needles on my lower back and on my head. can you please explain to me the difference? i dont know if the one im doing is the one im supposed to. I know i will have flare ups for sure but i also know im on my path of healing. this type of thinking makes everything better for me. i got all hung up in the reviews and commentary before and how most reviews explain vulvodynia can last many years.... this really stressed me out and scared me which made my pain worse. i just wish i never fell into that loophole, because sometimes i look back and wonder if my case will be the same as the women suffering for years. but i will not do that anymore...ive had enough if the negativity.
Suki_girl sarah1212
Posted
I repeatedly tell ladies not the read the negative stuff. There is a psychological component to nerve conditions and you really need to think positively or you can sink into a hole of depression and make the condition worse. How long have you had it? It sounds like you have been having western acupuncture. Traditional acupuncture is based on channels of energy in the body. Western or medical acupuncture is based on the nervous system. Also in western acupuncture they pass an electrical current through the needles. I loved that. I felt completely numbed and pain free after a session. The pain would gradually return over a few days but less and less each time. I will private message you but you could Google saginil gel epitech shop. It cost a lot for postage but well worth it. ypu only need a tiny bit on the painful area twice a day.
Suki_girl
Posted
I note that you can get saginil gel from Ebay here.
sarah1212 Suki_girl
Posted
I completely agree. when I let the negative comments get to me I feel very depressed and fall into a loophole. my vulvodynia started five months ago. as of what you explained I am having Western acupuncture done. The electric currents also really help me. I just actually came back from a session 20 minutes ago. I have a session every week. I feel completely numb and pain-free but as you mentioned, the pain creeps back in after a while. I will check my messages and hopefully find and order the saginil cream and begin using it. I believe that what we have experienced is completely something that will pass and takes time to fully heal. this is just because the vaginal area is such a delicate and sensitive area. Due to always being in the move, and that area always being compressed somehow (i.e sitting), it takes more time to heal. this is why I have been wearing skirts in the house and no underwear as much as I can. as you’ve mentioned in prior discussions I do not use toilet paper and just use coconut oil and wash my undergarments with baby detergent. I am following all your steps and I’m seeing somewhat of an improvement so i will just be following all these steps.
Suki_girl sarah1212
Posted
I am so pleased it is all working for you. Our vulvodynia causes and symptoms sound very similar. You are doing really well if it started 5 months ago. But it took me a long time to find what worked for me. You can benefit fromm my experience! Have you got a donut cushion for sitting on? I used, and still use, toilet paper that is natural and not treated with any chemicals. What are you doing to stop yeast infections coming back?
sarah1212 Suki_girl
Posted
I'm actually not too sure on what to do to prevent new yeast infections. if you have any tips on that please let me know. I just wanna preface how thankful I am that you took time out of your life even after you fully got healed to help others. Not a lot of people would share what had worked for them to help others, so they can recover sooner and not have to go through so many trial and errors. But yet again i dont know how long it'll take to recover.. All i know is that your tips are really helping and working for me. And am very lucky to have found you and this forum. People like you deserve the world, truly.
Suki_girl sarah1212
Posted
Thank you. I am blushing. I just don't think that anyone should be in pain and vulvodynia is one pain I have experience of and can possibly help a few to overcome it. It took me around 1.5 years to be pain free on a normal daily basis, another half a year to have pain free sex. On that note DO NOT have sex until you are pain free.
Clariver Suki_girl
Posted
hello Suki. glad to hear you continue doing well. there is a new book coming out soon on vulvodynia which will be very helpful, and will try and post details in due course., at the moment my posts have been deleted! if anyone would like details of the book, please contact me privately. I have been helped by a london pain clinic over the last year. many thanks for all your help to so many of us!
Suki_girl Clariver
Posted
Hi Clariver, I hope you too are now pain free and continue to be so.
sarah1212 Suki_girl
Posted
Hey suki,
Messages are not working so i wanted to contact you on the discussion. Like you, I made the mistake of using my steroid cream for too long. I got off of it them realized I was a lot more comfortable while using it and when i stopped i felt like it set me back. So I used it again and I had a reaction. Everywhere is just red and stung, I tried using the saginil gel to soothe it but it hadnt worked. So I'm gonna leave it and just let it settle on its own. I was doing great for about a month. Is this normal? I just feel like I havent made any progress due to this setback. Its not painful like before I just am very irritated.
sarah1212
Posted
I used it for the intended amount of time then used it again after 2 weeks so i didn't think I would have a reaction. I knew that i shouldn't use it for too long at once, i didn't think i would have gotten a reaction if i had stooped for a bit which was clearly the case.
Suki_girl sarah1212
Posted
That is exactly what happened to me
I was getting better and had to stop using the steroid cream because it can't be used long term. I had a bit of a set back - walked too far, I think - so I started using it again and it really stung bad and caused a major set back. I cant remember how long I was off it before using it again but it was definitely a matter of a few weeks. I found it odd because I tolerated it well the first time of using it. It's almost like you can use it for a while but if you come off it then use it again you have become sensitized too it. After that I was sensitive to every cream on there (this was a while before I discovered and tries the saginil gel). All I could put on there was coconut oil or Yes oil based lube. My sympathies, it is horrid having such a set back due to your own silly mistake . I am not calling you silly, I am remembering how stupid I felt when I caused my self these setbacks and really beat myself up about it. But I guess you have to go through that to learn what does and doesn't work for you.
I wonder if anyone else has had the same experience with steroid cream.
Annoying the private messages are out of action.
sarah1212 Suki_girl
Posted
Its awful. I do feel silly. But that's okay, I'm confident because your experience is so similar to mine and you recovered. Its taking months but my sensitivity is very slowly getting less. Obviously not at this time due to my set back. I trust the process because of you. I'm just gonna keep going. I'll get there.
Suki_girl sarah1212
Edited
It is uncanny how similar our cases are. With your positive attitude you will get there in the end.
sarah1212 Suki_girl
Posted
hey suki,
My flare up from the steroid cream has settled down thankfully. My pain was in a horse shoe shape along the opening of my vagina. Now the pain is only on one side of the horseshoe shape. But i also did have pain that crept into the back of my vagina. That is still present. The skin that has recovered which was part of the horseshoe shape is now the same colour as the rest of my vagina. Which is light pink and not irritated. But the rest of the painful area is still red looking. Was this how you recovered? The painful area just getting smaller. I noticed with my last flare up. My whole vagina gets red. Even my outer lips. I'm pretty sure its called the labia.
Suki_girl sarah1212
Posted
It was exactly like that for me. At the start of my vulvodynia everything down there looked red and inflamed. The main area of pain was, like you, a horseshoe shape posterior to the vaginal opening on the forchetta skin. As I got better the area of pain receded until it was just a small patch about the size and shape of a grain of rice posterior to the vaginal opening. Eventually that patch of pain went away too but would still feel sore after sex. It took a few more months to be completely pain free including after sex.
sarah1212 Suki_girl
Posted
Just saw your response! Great to hear, I'm glad that this is part of the healing process. I notice the healing process is a very up and down process. In terms of my painful patch. The process is definitely an upwards spiral of getting better. But It goes up and down, slowly always getting better. One day the painful patch will be larger and one day it will be smaller. I notice its on the days I have had more physical activity. But slowly and shirly, the healing is an upwards spiral. And the patch is smaller month by month, after my up and downs. Just a matter of time and patience.
sarah1212 Suki_girl
Posted
hello Suki,
I am writing to you honestly just for some support. I can say I am better but a little frusturated. Just because how long and frusterating my healing process has been. Like mentioned i dont have constant pain, only if i do an activity that really aggrivates me. Since it is summer I have been out a lot and just realized that this is kind of pulling back on my progress. Its like i have to chose between my vagina and going out and enjoying life. I just feel really frusterated and kind of sad. I fell into a loophole of searching my condition up on youtube and just scared myself again. Just because of how long it is taking and how calculated each activity I do. I would just like to talk to u as a friend.
Suki_girl sarah1212
Posted
Hi Sarah, sorry to hear that you are struggling. I was going to private message you but you so not seem to have private messaging turned on. Or I have a vague memory that patient info stopped allowing private messages. Summer is difficult. My vulvodynia started in June so I had it all through summer. I basically spent that summer not doing much, often just in bed resting. It is hard but you have to try not to do too much and aggravate the nerves. I lost one summer but I was much better by the next summer. During the first summer I was doing my pelvic floor exercises, manual desensitisation and very short walks that very gradually grew in length. I also think the heat can make it worse - heat worsens inflammation and also encourages thrush. So try to stay cool too. Please stop looking at all the bad news stories online - such negative thoughts will not help your recovery. You are going to have to accept that this summer will be a summer of not doing very much. It is so important not to do anything that aggravates the nerves or they will not recover. You do not have constant vulvodynia any more, just provoked, which is a good sign of recovery, but you do not want to overdo things and risk the pain becoming constant again. Remember, all those bad news stories of women who have had it for years are women who have got impatient and not stuck to the plan. Your nerves will allow you to do more, but you have to build it up so gradually. If you do something that causes pain afterwards, take a step back and do less. I started just by walking to the next house along our street and each week added a house. Are you doing manual desensitisation to retrain the nerves to respond to touch as touch and not pain? I am not sure what is happening with private messaging - I would like to give you my email address so we can chat privately.
sarah1212 Suki_girl
Posted
Thanks for your message it was very reassuring . That would be amazing. My private messaging ability is still disabled. I tried to turn it back on but the website hasn't been allowing me. I also tried making another account so i could message you on that but the messaging for that account is as well disabled. So instead I would really appreciate having your email. I just don't how how we would be able exchange it privately. If there is no private way I can just make a new email and send it to you through the discussion. I would like to discuss everything you have mentioned in your last message through email!
Suki_girl sarah1212
Posted
I can't switch on messaging on my account either. I tried getting into the private messages via my last email notification of the last private message you sent me. I clicked "go to message" and got this:
Private messages have been temporarily disabled. While we realise this will inconvenience a number of our users, we regrettably must remove this functionality while some critical issues are addressed. You will not be able to send or view any private messages on Patient.info until further notice.
I think it has been like this for some time.
sarah1212 Suki_girl
Posted
Same for me, Its okay i dont mind messaging you here.
So my problem for my vulvodynia is vestibulitis which means the area that hurts is inflammed. For me its in the horse shoe shape 12 0 clock of my vaginal opening. It started off very inflammed and just very slowly is going down. The healing process is not a steady process. It goes up and down, but eventually fully going downward (inflammation). So its the healing process which is making my vulvodynia last so long. Thank god its not constant tho, only provoked. Still annoying. I feel like the hot weather is for sure making the inflammation worse.
Suki_girl sarah1212
Posted
I had the same. Biopsy showed inflammation and I had the classic horseshoe shaped area of pain to the rear of the vaginal opening which, at it's worse reached all the way back to my anus. Heat does make inflammation worse. Many women find that cold helps, like a cold pack but not directly in contact with the skin because that would cause more damage. Just like when you strain a muscle you apply cold to reduce the inflammation.
sarah1212 Suki_girl
Posted
Yes, my doctor said vestibulitis takes long just because the vagina is such a damp environment which can easily get irritated (walking). I'm taking it easy and making sure i wear lose clothing so that area gets aired out. Ive also put on a few pounds because i obviously havent been as active as before. But i dont mind, Im feeling much better than i did months ago.