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
hilde33174 Suki_girl
Posted
Did it hurt for some of you guys to sit on the donut after a while?
I feel like sitting on the donut does not hurt the problem area just other nerves/muscles. It now hurt a bit on my butt. If I massage it I can feel the shooting again, but not in the problem area so its fine.
Suki_girl hilde33174
Posted
I was fine with the donut cushion. Is it making you sit differently?
hilde33174 Suki_girl
Posted
It does not hurt on the problem area at least so I'm not complaining. I was just wondering if it happened to anyone else.
Where the donut goes down on the sides it's not that comfortable after awhile because it's not flat like when we normally sit on something it is.
It's hard to explain.
Suki_girl hilde33174
Posted
Perhaps the donut is too firm? or not wide enough? mine is quite soft and wide so supports my buttocks well.
rachel1million hilde33174
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I sometimes sit on a u shaped cushion... the ones you can get to support your neck... find that pretty comfy...
hilde33174 Suki_girl
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It might not be wide enough since it hurt my butt and legs. I will look for another one.
hilde33174 rachel1million
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Okay, thanks. Will see what I find.
hilde33174
Posted
I got menstruation last night. It was horrible. It felt like the blood fired off the shooting pain so I had some of that. I'm going to try seeing the physio on tuesday. Anyone else experienced that? It's probably because something is touching that area since it happened when I had a lot of discharge. I clean it with coconut oil, but I have to be really careful since it's so sensitive. More than before. I'm scared it would not go away. I do not get away all the blood so it's still really irritated and I can feel it, but if I clean to close to the area the shooting pain comes back. It's a little bit uncomfortable to pee in the beginning again, but I know it is because the blood is touching the problem area.
I'm scared to death since the shooting pain is kind of back now. I don't know if it will go away when the menstruation is gone. I keep praying for it, but I don't think luck is on my side anymore.
Has anyone been to a physio and will share there stories?
Someone that has the shooting pain would be great. I just need to calm myself down. I booked an acupuncture session right after just in case it goes bad.
hilde33174 Suki_girl
Posted
I get worse when I have menstration. Can it be connected with that or is it because the blood makes it worse. It also got worse when I had vaginal discharge so I think it is because something is touching it and I'm just really sensitive to that.
What is it to do if it has something to do with menstration? I'm on the pill right now and I have not had it in five months. What more is it to do?
Even if it is not connected I want to do everything that I can just to be sure.
rachel1million hilde33174
Posted
I guess there is a hormonal change when you have your period and it probably changes the balance of your vagina. I tend to have my worst flare ups just before and during my period.
hilde33174 rachel1million
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Okay, I understand. Is there something I can do or does it just happen anyways?
susan05495 hilde33174
Posted
Have you tried changing the type of pill you are on ? im progesterone sensitive .
Suki_girl hilde33174
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Hormone levels definitely do affect it. What do you mean by "I'm on the pill right now and have not had it in five months"? Not had what? The pill? Menstration? The pain?
Suki_girl hilde33174
Posted
Hormone levels definitely do affect it. What do you mean by "I'm on the pill right now and have not had it in five months"? Not had what? The pill? Menstration? The pain?
hilde33174 Suki_girl
Posted
I meant I have not had menstration in five months. The pain got a lot worse when I started to bleed not days before the menstration. I usually get stomach ache a few days before I start to bleed and it did not irritate the problem area then. So, that is why I think it is because of the bleeding that it hurts. It helps when I clean it with coconut oil.
hilde33174 susan05495
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I was thinking about asking my gynecologist. What did you do since you are progesterone sensitive? I took the tests when I saw my doctor and he said everything looked fine with my estrogen.
susan05495 hilde33174
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most contraceptive pills are a mix of oestrogen and progestrone . you can get some that only have 7 days progestone
Suki_girl hilde33174
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why have you not had menstration for 5 month? Sorry, remind me, are you going through pre menopause?
hilde33174 Suki_girl
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I went on the pill because I have endometriosis (We don't know if I have endometriosis but my gynie told me she thinks it is that since it hurts so badly when I'm on my period. I almost fainted and my stomach aches was really bad.) My gynie prescribed normal contraceptive pills and told me I could lose my period or it could come less often.
For me it kind of works. I was fine with it when I just had endometriosis, but now with the vulvodynia it's horrible that I have menstration even though it's not that often. But when I start to bleed it's like hell again. I could try another contraceptive pill, but I don't really want to take that risk. I don't know if that will make me get my periods more.
hilde33174 susan05495
Posted
I'm gonna make an appointment and ask my gynie what she thinks is best. Forgot to update you guys. I went to the fysio and it was okay. She massaged me and when I came home it was not that good, but I think it was due to my menstration. It's hard to tell. Anyways, she said something about getting a electronic device that I'm gonna have on my ankle and it is suppose to work kind of like acupuncture. It sends some signals or something to my vagina. It's working indirectly on the problem area.
I also upped my dose to 70mg ami. I don't really feel any difference. However, I remember when I went down to 50mg from 6mg I felt a difference so it probably works I just don't feel it before I actually go down on the dose.
hilde33174 Suki_girl
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It's okay. It was my fault for not explaining better:)
hilde33174 susan05495
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How are you?
marina91325 hilde33174
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my god, girl, you going through a lot! wish you well. bless you x
Suki_girl hilde33174
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did the vulvodynia start when you started the pill? I knew someone whose vulvodynia pain went away when she came off he pill.
hilde33174 marina91325
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Thank you. It's not easy, but I'm still alive fighting. Bless you too.
hilde33174 Suki_girl
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No, I started on the contractive pill years before I got the vulvodynia. Thats why I don't see any connection between them. I think I got my vulvodynia because I have vaginismus as well and it got triggered either by urinary infection or taking way too much antibiotics. Because right after I had urinary infection I got vulvodynia and it was not the antibiotics that removed the urinary infection it just went away and then I got vulvodynia. That's why I feel like it is linked somehow. However, it's just a theory.
hilde33174 marina91325
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Hope everything is okay with you still!
Suki_girl hilde33174
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Yes, it is difficult trying to trace back the cause of the condition.
marina91325 hilde33174
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thank you Hilder, i do have pain sometimes, but olive oil helps me.i try to keep the problem area clean and stopped shaving. i got another problem at the moment - hives, very horrible condition, itchy and patchy. it is all from stress. stress is the reason for all my health issures. might be only in my case, i do not know. different health issures, but the same trigger.
i am reading your posts and its horrible to even think what you are going through. i think you doing everything right and you are in a good hands, just keep going and dont give up. i know it is easy to say that to do, but at least you are trying.
hilde33174 marina91325
Posted
Oh, I'm so sorry to hear that. It's good that you don't feel the pain everyday though. I hope you get better soon.
Yes, it has been really hard, but it does not make it easier when I have to fight with my doctors and they say it's not something that is dangerous it's just pain. I hate to hear that because I felt like giving up and I did not wanted to live anymore at some point and for the doctors and fysio to say that it's not that hard it's just pain is horrible. But, I just stopped listing to them. It's hard though since my fysio feel that way too and I need her help. I understand what she mean, but it does not help me anything to hear that.
hilde33174 Suki_girl
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Yes, I have no idea and my doctors don't seem to care at all about that.
marina91325 hilde33174
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oh, doctors! it is another long song! sometimes i think that there is no good doctors left. it seems that nowdays they just trying to ease the problem, but not treat it. i had a very good GP before, but we moved to another area and they kicked us out from our surgery. on my the last visit to my doctor (and he become our family friend) i was crying and hugging him. it was a very big lost to loose such a good doctor and a friend. since then, bad luck. they just trying to rid of you and saying that its not dangerous and sending you to pain manegment or just home, without any explanations or solutions and treatment.
i remember in Soviet times (Russia) the medicine was very good and people were actualy getting proper treatments, now you just have to go private if you want to be taken seriously. only rich people got the prevllage to be treated properly((((
hilde33174 marina91325
Posted
I definitely understand what you mean. I went through a really similar experience. I have fought so hard with the doctors and specialists that I feel like I'm on the blacklist. When I ring to make an appointment I feel like they say "oh, it's her again". I hate it. It should not be like that. My doctor is back and I'm glad, but he does not know what to do.
I'm gonna make an appointment to see my gynie and explain everything even though I know she don't what to listen to it. But I feel like she is a gynecologist for god sake! She should do some research since she don't know what vulvodynia is.
marina91325 hilde33174
Posted
ha ha ha the same story! they know me by name, hello Marina)))) and to make an appointment they always ask me what is wrong with me and then decide if i need an appointment or not... so bad! i am not fighting only with the doctors but with the reception as well, it adds more stress and i hate going there.
my gynecologist just send me to the pain management, he said there was nothing wrong!
i think you should just tell me like, listen i am too young, i got the whole life ahead of me, i got plans for the future, i got my own private life, i need help, support, treatment and understanding. if they do not know, ask them to send you to someone who knows, if they think he knows. tell them that you are not going to give up and going to work with them as a team. God, so frastraiting! i remember once i was so fed up, so i shouted at them and said i am not going anywhere untill i am being seen. it worked.
hilde33174 marina91325
Posted
Yes, me too. They always remembered my name, but not in a nice way. It was more like "oh, it's you again..". That is how it felt like at least and yes I also had to fight with them. I understand the frustration and that is why I'm so passionated about talking about it to everyone. I want people to know what vulvodynia is and hopefully they will get help faster that we did. I will tell my story to my gyni even though I know she won't like to hear it.
Currently I'm on the waiting list and the first appointment I got was in nov/dec 2019. It's a place called vulva clinic and they are specialized on pain in the vulva. My doctor personally called them and asked if it was possible to move the date, but they said no.
I will update you if the fyiso made me pain free and back to normal.
marina91325 hilde33174
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Good luck with the vulva clinic Hilde, hopefully its the right place at last and they know what they doing and will find out how to treat you. it sounds like the last hope to be honest.
hilde33174 susan05495
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I forgot to ask what is the difference with taking a contraceptive pill that contains both estrogen and progesterone and taking a contraceptive pill that only contains progesterone?
hilde33174 marina91325
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Yes. I hope so too. However, I feel like they cannot do much since they can't touch me. I think my acupuncturist and fysio is going to help me more. I just don't understand why it's not gone by now. I understand it's going to take time, but I do feel like I have a bad month. I felt better with the acupuncture until I came to a point were I did not feel like it did anything for me anymore. I felt bad because my mom pay for it and it's not cheap. That is why I contacted the fysio.
It's hard to fight when I feel like it's not going in the right directions. It's depressing too because I know you guys made it just with acupuncture and the exercises.
I'm so frustrated and I'm so scared I will never get ride of it. I don't understand why it does not work for me.
susan05495 hilde33174
Posted
unfortunatley no 2 people have same pain.
with the pill for me i dont do well with progrsterone . When i was younger and had bad pain i came off the pill and it went away for 15 years . im now on HRT which is all oestrogen and only 10 days progesterone .
however my boyfriend and i had a huge row and hes left me . . I fell apart and the vulvadynia is back due to the stress of it all . im trying to manage it with lidocaine
hilde33174 susan05495
Posted
I'm so sorry to hear that. It's hard to have a boyfriend with this condition. They don't understand and I do get why. I don't tell mine everything because we broke up since I could never visit him. Now we are back together kind of but he thinks I'm doing better.
Hope everything will be great again. Nobody deserves this pain that we have suffered and some still suffer.
If something happens or you get worse you can always talk to me.
marina91325 hilde33174
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just a thought - maybe its not only vulvadiya you have, maybe there are one or more issures combined together? maybe that is why nothing works?
marina91325 hilde33174
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never tell them anything, they do not understand any way, it just puts them off instead.
hilde33174 marina91325
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Yes, I have been wondering if it can be something else too. I felt like it was enough having vulvodynia and vaginismus. I will try to do some research because I know that my doctors don't know what to do. Thanks for the tip