cannot cope anymore

Hi, I just found this website today. I am 19 years old and first started suffering badly when I was 15. I can't sit here and share my history of this today as I am in such a bad frame of mind I think it may just reduce me to tears for the fourth time today, so maybe I will share that another day! To put it simply I started having sex and went on the pill and everything was fine, then 5 months later the problems started, and it has progressed from pain during sex and my period to how it is now 4 years later - 24/7 pain that has completely taken over my life.

PROBLEM - I have unprovoked vulvodynia which burns 24/7, there is no time when it is not hurting me. My relationship with my boyfriend who I have been with for over 4 years is really suffering. I cannot have sex, and haven't for so long that I don't even remember the last time I did it, certainly not within the past 2 years. I do not leave the house. I cannot wear underwear. I had to leave a job I had just started last year. All I can wear is very loose very thin tracksuit bottoms and nothing else on my bottom half. I have no life anymore literally, I am just stuck in the house. I can't even go for a walk or do any exercise. I don't know how else to explain it other than I feel that this condition has completely stopped everything in my life and I am so down about it that I don't know what to do with myself. No money, no social life, no sex life and no happy thoughts any more.

TREATMENTS THAT I HAVE TRIED AND THAT HAVE FAILED -
-I have been on pretty much all thrush treatments..That includes creams, internal creams, pessaries, oral tablets, the LOT..this was when I was much younger and the problem began.
-I have also been on several types of tricyclic anti depressants which were supposed to act as nerve blockers, amitriptyline and some others.
-I have been given so many creams I can't even remember the names.. a few that spring to mind are hydrocortisone, daktarin, anti fungal creams, ketoconazole.. there are more but I can't think of names.
-I have also been on gabapentin and lyrica on several different doses, higher each time with no effect.
-I have also used lidocaine 5% which is a sort of ointment/cream..it is not a solution, it does not get rid of my pain, but it is the only thing that I have ever been prescribed which has made a teeny tiny difference, so I would recommend this. However it is still excrutiating, just a tiny bit less excrutiating!
................. I can't even begin to think of what other treatments along the lines of tablets and creams I have used because there are so many!

-Also I went to CBT therapy which didn't help, the therapist was lovely and tried to boost my confidence, but it didn't help in the way of my actual pain.

-In December I had steroid injections. I have been worse than I have ever been in the last 2 months and am going back to my consultant in 2 weeks.

I know that every woman who has vulvodynia is suffering and I would appreciate replies from all of you on this forum, but is there anybody out there who is at the same stage as me and can't even go out anymore?

Thank you for reading my post, I really appreciate that there are people out there that can empathise with what I am going through and to anyone reading this..I wish you all the best with your treatments and hope that you feel better ASAP. Also, if you are in the earlier stages of vulvodynia and have any questions about treatments that I have tried, please feel free to ask me anything!

My heart goes out to you, I have cyclical pain-it comes mainly after my period and can stay anywhere from a few days to a month. I cant imagine being in your position and Im so sorry that you are so young and you have suffered like this. I cant offer anything in the way of treatment-it seem like you have tried it all but Ill let you know what has worked for me-I use betnovate when the pain it bad-I always seem to get a yeast infection after my period so I have to use a pessary and cream and it helps.
Im allergic to a lot of foods so I avoid wheat, dairy, sugar, yeats and corn and I do notice a difference in my pain.
As I said I cant offer many remedies as you seem to have tried them all but I can offer my support in any way
Pepper x

Thank you for replying I really appreciate your support.
Have you ever thought about going on the mini pill to stop your periods for a while? I tried it before and it didn't really agree with me (contraceptive pills never seemed to agree with me!) but maybe it is something that would reduce the amount of time you spend in pain? Just a thought . Also, the internal creams are good for yeast infections, you've probably tried them but if not I would recommend them as they used to be the most soothing for me when my problem first started. They're just like a pessary but cream instead.

I don't think I have tried Betnovate so I will mention it in my next appointment and see if its worth a try, thanks for recommending that.

Ah yeah I have read a lot about changing your diet to reduce oxylates or something to reduce pain, think I need to research a bit more though to distinguish what exactly I should cut down on.
Thank you so much again for your support, if you have any questions about anything that I have tried just let me know and I will be happy to answer them x

I have unprovoked generalised V and VVS too and creams aren't going to fix diffuse burning so I'd stick to using nothing down there if you can. You don't mention anticonvulsants which can be tried to reduce pain so if you haven't tried them I'd ask your GP about Gabapentin or Lyrica. I also see no mention of physiotherapy, have you had you pelvic floor checked for tightness? It would be worth going down that route too. Some of the girls on here wear long skirts with no underwear when they go out or soft leggings. I understand your situation because I'm also very restricted about going anywhere because of the V and other conditions so I don't have a full time job (I have a part time one from home), have no social life and my partner left me because of my health issues so no sex life too so I do understand how hopeless you feel but you haven't tried everything yet so there are still options out there.

Hi. I've already been on gabapentin and lyrica I did mention it in the 'treatments I have used and that have failed' bit, but thank you anyway, neither made any difference even though I was put on several higher doses over quite a long period. I had a 'tense test' for tightness before which left me in agony, but tightness isn't the problem because I never experienced pain at all not even during sex before. I believe repeated yeast infections from going on the pill caused the nerve damage leading to vulvodynia. Yes I was wearing leggings for a while but I realised that clothing that doesn't allow any air there seems to make it worse, I know it sounds silly but if I get at all hot there it is much worse. Thank you for the skirt idea though I will definitely try this soon. If you don't mind me asking what job do you do from home? I have been trying and trying to find something that I can do at home with no luck . Don't worry if you don't want to say though . Thank you for replying to my post I really appreciate your understanding and advice .

Hi

Iv got insanely irregular periods so my doctor is making me stay on the pill for a year to regulate them (I have periods lasting up to 15 days sometimes sooooo not fun )
I also believe my vulvodynia was caused by constant yeast infections which is why I try and keep my the infections to a minimum-which is were the restricted diet comes in-I would recommend Good Gut Healing by Kathryn Marsden in regards to candida, food allergies, Leaky Gut Syndrome etc I find when I stick to her diet and follow her advice my symptoms reduce dramatically. For me Sugar is a Massive instigator of my V pain and when I avoid it the pain is definitely less.
I use a pessary for the yeast infection but Ill look into the cream Thanks
I agree with Sara you should check the pelvic floor exercises Iv not tried them myself but I will be looking into them.
Px

Hi again Pepper7 from my experience and many others that I have spoken to the pill creates thrush problems and so do periods, so I know you need to stay on it to regulate your periods, but you could maybe discuss trying a new pill or going on the mini pill where you don't really have periods. I know it's not really ideal but it may help because if your problem is cyclical then getting rid of your periods for a little while would, in theory, get rid of the problem. It may not be that simple but you could always research it or something. Just a thought as it may help to relieve your pain .

thanks I will have a look at your recommendations for the diet changes, its just hard because well I love sugary foods and chocolate ha ha !!

Hi Smile22,

OMG me too! I miss chocolate sooooooo much!

Im going the doctors tomorrow for a check up (sometimes I need someone else to check its still all V pain and nothing else) and a referral but Ill talk to her about the mini pill too.
With the coming off sugar just try it one day at a time like have one day of just water, loads of fresh veg, plain meat or fish and judge the pain from there if its less try the same the next day and so on etc thats what I do and Im on my 3rd day of a relative pain free foof. I also have had two days without pantyliners which I have wore every day since I was 13-I reckon they cause a lot of problems too and its been nice feeling vaguely normal the past few days.

Thanks for the pill advice

Px

that's good, you never know one of these things may help your pain to completely disappear which would be great!!

i am quite a chocolate addict ha ha, i love fruit and veg but i get such bad cravings for junk food sometimes! thanks so much i will try sticking to that for a couple of days within the next week and see if i feel a difference from a normal day. fingers crossed !

yeah, i cant even wear underwear right now, but i would say you should avoid the pantyliners completely, i used to wear them all the time too but its a good idea to try and get used to not wearing them, it will probably really help as its one less thing that can irritate you down there.

No problem I hope your doctor is helpful tomorrow !!

Sorry to hear you are suffering. I had a period of time where I could not even tolorate underwear either. I have/had 24/7 pain also. Read into my herbs thread. I tried ALL of the antidepressent and anticonvulsant meds (word of warning Lyrica flared me terribly) I tried creams. pelvic floor therapy (VERY HELPFUL with sex pain but not with daily pain)

Advice:

Try evening primrose oil to regulate your periods and get off that bloody pill that started the process in the begining (I use EPO and it has got my irregular periods down from once every 3 months (pre pill) to every 2 months. Still not ovulating though. Stops all the pms and heavy periods too (i used to pass out from periods) I also get no yeast infections off the pill - sometimes it's hard to tell the difference between yeast and vv irritation but that yeast has gone since being off the pill.

Diet diet diet - NO Acidic food at all. (IC diet list on IC network)
Bicarb soda in a bath - it works I don't know why
I use a menstrual cup instead of pads/tampons to avioid irritation, but have taken to using it daily - stops the vaginal secreations from irritationg my vulva skin as it doesn't even get there (I don't have pain inserting things anymore though)
Get all your hormones tested from your GP.
Pelvic Floor therapy

Thats all I could think of for now that you have not tried.

Good luck!! xx

Hi Smile!

Hows it going?
I went to my docs and have been put on a months supply of Amitryptaline (sp) and a refferal to a gynie therapist (my doctor thinks I need some sort of sex therapy haha)
I still havent touched sugar and I have had virtually no symptoms since but I just got my period and my pain is always worse after my period so.........we'll see.
Px

Hi Aussie, I am going to look at the acidic food and try to cut it out, its just hard because I am stuck at home so all I want is to eat eat eat because of boredem! Thanks I haven't been on the pill for about 3 years, I'm not sure if that bit was aimed at me or the other woman posting on this thread but my periods are pretty regular.
Yes lyrica is pretty rubbish! Did nothing for me :/.
I can't put anything in not even a milimeter so the menstrual cup is out of the question for now, but if I get better I may consider it as it sounds less irritating than pads.
Thanks so much, I'm going to see my consultant on Monday so I will suggest the hormone tests if they give me the time of day and see what comes of it. Thanks so much for your advice I will definitely look into the non acidic diet and herbs route! And I'm sorry to hear that you have the 24/7 pain like me its so awful I wouldn't wish it on anybody X

Hi Pepper, not so good, I'm really struggling this week, crying all the time and just lying in bed cause of the burning . I have been on Amitriptyline for a few months a couple of years ago, it didn't do anything for me but as your pain is a bit different to mine hopefully it'll give you some permanent relief! Good luck with the therapist, I hope they can help you. I really want to do the non sugar diet, but I just can't, its like because I'm stuck in the house all I can think about is eating lol! I have no self control with food its terrible! It sounds like you are really making some progress though which is brilliant, keep going :)X