Hi. I am nearly 21 years old and for over two years now, I have been sore and had burning when I wee, all before I even started in the relationship I am in. It was in a way copeable but gradually it has got worse and now I am very very seriously depressed and it's ruining my life. I have missed out on the important years that you go out and have a laugh with your mates. It is sore all the time, as if I am sitting on kinifes and have lots of cuts. The sore area is just inside my vagina in the opening. It gets brought on more when I wee and I can very rarely have sex with my fiancé which is upsetting me so much because I have not been sleeping around like other people my age and I have got all this pain and trouble. I developed a urinary infection in December 06 for the first time, around a year after I started to get sore.
Then I had another one just before I went on holiday, in July 2007. Since the last one the problem has not got any better, it still feels like I have an infection and that its never gone, girls that know what urinary infections feel like, I hope you can understand how bad I feel all the time. I have had about three or four tests that have come back saying I have no sti's or female problems like cystitis, and I no longer have a urinary tract infection. My doctor is uselsss and really doesn't listen so it took a long time to get referred to a specialist at the hospital.
Again I explain it all to them but they say things like, oh well there's no infection and it looks fine. Because I go to the toilet quite a lot, they did a test that shows them how my bladder works and they have said I probably have an overactive bladder. I am now on tablets and the amount I wee has sort of improved but the soreness hasn't got better at all. I have a camera test that will look at my urinary tract and bladder, but I just can't see them doing enough to actually find out about the soreness, they just seem to want to diagnose something and leave it. But there is no way I can, its so painful, that I can't work, I have lost friends, I can't enjoy a life with my fiancé, I can't look at starting a family etc.
I just don't know what more I can do and what the hell it could be. What can I do to make my doctors help me and listen because they say its not life threatening but its controlled my life for years now and it might sound pathetic but if I can't sort it out I will have to end it with my fiancé and top myself or something, there's just no way I can live with it. I have done everything to reduce it being sore like not using soap near the area or tight clothing, but it hasn't worked. I just sit in bed trying to grasp the pain. If anyone has advice about what it could be and how I can get the doctors to listen, I'd really appreciate it. And please no mentions that it is an infection because it definitely isn't!
Jen

Okay first thing is first:

What do you mean by sore? Like it stings/burns when you pee?

I have had a UTI before but my vagina wasn't sore. I peed quit frequently and there was blood that came with it but never sore as you say.

As much as I hate saying this but it could possible be herpes. Herpes can form small blisters in the opening of the vagina and can really be painful when peeing. Feel around in the opening of your' vagina. Is there any small bumps that sting when you pass your' fingers by it? Herpes is hard to detect without actually having a break out but you said this has been happeing to you for 2 years and you have been checked when the pain was present right?

hiya thanks for answering.
Well, it is kind of like a sore throat but in a different place, and it is always there but when I wee it burns and stings more. I've never had blood, just the pain. I've been tested and been looked at and have no infections like herpes etc. I have only been with two people and they've been tested too. It's a physical thing but just don't know what. I'm so depressed, it's even worse that even the whole internet can't find anything exactly like this

Well hunny, like I said it is hard to detect for herpes unless you have an outbreak. I asked you if you got tested when the pain was occurring, like that day? The doctor(s) could have detected for it but that doesn't mean the results were accurate. Im not trying to convince you that you do have it but that is what it sounds like.

Well if it is a physical thing then why haven't the doctors named it?

Herpes is not an infection but a virus.

Have your doctors ruled out bacterial vaginosis (I'm assuming they have) and any hormonal imbalances? Is the pain always there? Do you ever get any days of relief maybe connected to your menstrual cycle?

I know all about unexplained and seemingly undefeatable afflictions taking on a life of their own and causing something called "second fear" where you can make yourself sicker just through the stress of worrying about this thing in your life that you have no control over. It probably feels like it has taken over half of your brain by now. Do you do any physical activities to help funnel off some of your stress? I took up yoga and for that one hour a week I don't think about anything else and I feel normal. Stress affects your hormones, which can affect everything.

Have you tried a doctor who can take a look at your total health? Maybe there is something else going on that is simply manifesting itself in this manner.

Have you ever hear of Dr. Mehmet Oz? He has been featured on the Oprah show many times and seems to be really well informed about a wide variety of health problems, particularly about the interconnectedness of everything that is happening in our bodies. Here's a link to the ask Dr. Oz page on Oprah's website. After years of suffering without explanation it might be worth a shot.

Dr. Mehmet Oz: Ask Dr. Oz

hiya. The docs have done a lot of blood tests, not sure about that bacterial thing you menchaned but I'm guessing that something would have shown up on the results if there was any infection type thing. For another reason a while ago, I had hormone tests but they were fine apart from my doc said there were one hormone that I had a bit of a higher level of but it was no problem, I can't remember what the hormone was because it was a while ago but it can't of been a problem as she said it was fine. (Although she's a crap doctor). Yes, I always have the pain, daily, even on periods. I do agree that stress may be making it worse but its still there without the stress. I haven't tried any exercise because it is quite uncomfortable doing any movements sometimes but I will look in to it like you said and I will look at that website. Thank you for your help. I am seeing my consultant next on the 21st to have a camera in my urinary tract that will hurt so much but I know I have to go through it, then I will see him on the 4th March for a consultation. I have decided to really put my views across even more than I already have, if he says there's nothing more to do I'll say that it's already put my life on hold and it may not kill me but I shouldn't have to live with it and I won't live with it. I am trying to look into overactive bladders but can't find anything that says it can make you sore so I doubt that it is connected to that. Thanks

Hi, what happened with your consultant?
I'm so sorry you've had to put up with this for years and years, I too have had a similar problem for a few months, and the pain can be extruciating.
In July last year I thought I had cystitis, and drank loads of cranberry juice to try to get rid of it. When it didn't go away I got tested time and time again by my doctor, and she found 'no infection'. I constantly hassled her and other doctors just because the pain got worse and worse, and my vagina got very sore. Eventually I was given a swab examination and was found to have a particularly bad yeast infection in my vagina (quite high up), so the doctor gave me more treatments to try and get rid of it. It went relatively quickly, but the opening to my vagina was sore and my weeing was still painful. The only thing that has stopped the wee being painful was to literally put absolutely loads of thrush (canesten) cream on my clitoris and vagina three times a day. My wee now doesn't hurt, but my vagina is still sore. I've now been diagnosed as also having a latex condom allergy, and just now need time to repair, just because I'm so terribly sore. It's made worse by my boyfriend who constantly wants sex, whereas I want it but just can't. I'm very depressed about it, and just want to be back to normal. I understand how you feel :(

Thank you for your understanding. It's horrible isn't it. I just have no life. I feel I am being treated sp badly, passed on and on, more doctors looking and making the pain worse with examinations. I had a cystoscopy, they said there was inflammation and chronic cervictis, which at the follow up appointment (with another new doctor that doesn't understand). I asked about this condition and he said its normal and nothing to worry about, I have read up on this and it isn't normal at all, it can cause you to be infertile and if left develop even more serious conditions of the whole pelvic area. I am going to write a complaint letter to the consultant I have been seeing because I have really been treated so badly and am not being listened to. Also if I do become infertile, they'll be in big trouble. I'll make sure. I have yet another procedure, a camera through my stomach to look at my ovaries etc. I know this will result in nothing and need them 2 sort out the inflammation and that chronic cervictis, but they are just being lazy. The inflammation and cervictis is most definitely causing my soreness. I am seriously at breaking point now, I can't even go out the house, and everyone constantly talking about sex etc, makes me want to burst in to tears. I have never slept around, I have a long term fiancé that says he's OK wiv it but how long can it last really. I don't go a day without people bringing up sex. Like you, I want sex and sometimes I have to pretend I am not too sore to please my fella, but even that is months apart.:mad:

I'm wondering, just what country you're in? I can't imagine this sort of treatment happening where I am from; the UK. In case you aren't from the uk, I am going to post you a link to the NHS Direct website, where you can find out more about your condition, and treatments. It may even be worth coming to this country for treatment if you can get it, because we have expert gynaecologists who could probably help you immensely.
NHS Direct - Health & Medical Information
If you cannot find anything on there, search for treatments available in the UK. You are right, you do not need to put up with this.
You may have already read this but I shall paste it here for you to read too;
Cervicitis: Causes and Cures. Keep me updated, and in the meantime I say do not have sex, make a pact not to have sex until you are better. If your fiancé is the man for you, he will understand.

Hi - I too have had pain due to uti (urinary tract infection) twice in the last 3 months. As well as a yeast infection - accompanying all of these probs was vaginal pain - burning, stabbing sometimes.
It's different than the burning that you feel when you pee due to an infection, and I'm not sure, like you, about its cause. Have had an ultrasound recently & on a referral list for gynecology. I suspect it could be the nerve-based disorder, vulvar vestibulitis, but have not yet been diagnosed.
Have you heard of this disorder & do you think you might have it?
See link to article from the American Academy of Family Physician - read the illustrative case - it may be similar to what you're feeling as well. Hope your symptoms improve!
Vulvodynia and Vulvar Vestibulitis: Challenges in Diagnosis and Management - March 15, 1999 - American Academy of Family Physicians

Hello,
I am also 21. I have everything you have. I started to have this pain even before I had sex with my now husband. My periods are terrible and sex is almost impossible now. My pain is just up in the first 1/2 inch or so into the vagina, and peeing burns. Sharp pains also happen. I am very depressed about it all and very frustrated. I had a biopsy done last year and they told me I had Lichen Sclerosis. When the treatments were not working, I had another biopsy done in another hospital and they said I had no lichen sclerosis, but vaginal warts. However, I have NO symptoms at all. No wart like lesions, nothing. Have you had a biopsy yet? I have looked at the last persons answer and I think she may be very right. I am going to my doctor later this week to ask about it. Please let me know how everything goes.

Hi. Glad there are others with the same pronlem. I have been on tablets for vulvodynia for a few months, they are tablets used for depression, they try to make your brain think that the pain isn't as bad. But for me nothing has changed. I may be referred to a hospital in london but think it will be the same all over again. Its so bad now, I can't even see friends etc and be normal! Keep in touch please.

Hello Jen
I am 17 years old and am also currently experiencing the same problem and also feel very depressed about this problem. I have also suffered from urinary tract infections very seriously and have been hospitalized in the past due to this problem. Like yourself I am in a long term relationship and we were both checked for sti's etc before we slept together. It is making me very insecure that I also can not have sex due to the pain experieced. My partner says he will support me and he doesn't but deep down I feel what if he goes else where for it. I am going to see a gyno at end of month. Have you got any advise how to deal with this? Anything worked for yourself?
Jodz x

hiya.
Haven't had any decent advice, just feel that when doctors test for the most common things (which they always do and fair enough) but they don't ever want to work hard 2 find out if it could be something else, they just get lazy and pass me on. I just don't know why I have this, why can't people that sleep around get problems like this, I never have slept around and I just want a loving relationship. I know how bad it is with the boyfriend thing, I do my best in other ways but even with that the pain (no matter what I am doing doesn't improve, even just sitting down it hurts bad). I went down the line of it may be vulvodynia but now pretty sure its not. I just have NO idea at all what it is! I can't stand it that when I get poked and prodded about, doctors just ignore me when I am saying the pain is at the entrance and they just put that thing that opens you up in (which really really hurts) and doing that means they aren't looking properly at the area I am saying hurts, it is just getting unberable. I am getting people talk about me and that because I can't work right now until I'm sorted, nobody knows the actual prob apart from my fiancé but they know I'm unwell but just don't understand I'm in agony. I can't even see my mates anymore. Stay in touch

It is common to get urinary tract infections if sexually active. Many women who have chronic vaginal infections need to make sure her mate gets treated at the same time she is treated, otherwise you will just pingpong the infection back and forth. Yes, this could be herpes which a gynecologist could diagnose, and take tests for. Your problems need to be addressed by a gynecologist and not on the internet. All we can do is give you information but your doctor needs to SEE the problem. Good luck. Retired ob/gyn

Well, as I have said more than a few times, I am being seen by gyanecologists etc, and nothing really has come of it apart from they put me on tablets after doing a urodynamics test (which being in this field you should know what I mean) and said I have an over-active bladder, because the doctors I were seeing were rather useless, they haven't menchaned this again and they obviously have examined me and haven't found anything. Although they weren't great, I'm sure ANY doctor would (after being painfully examined many times and having tests) have realised if I had herpes or those kind of things. I am not sexually active because of the pain and haven't been for months and months so there isn't an infection being passed on between me and my partner. We both have not been with anyone else. So, this isn't a sexually transmitted disease, please everybody take note because I have seen doctors and tests have been done for these types of diseases and I haven't got one! The reason I am looking online is because this awful thing I have and that is ruining my life, is obviously something rare and hard to diagnose, I am doing all I can possibly do to find out what it is, sitting there not doing anything won't help, so I am trying anything and everything to see if somebody out there can help or has the same problem.
I don't mean to sound rude but I do not have a sexually transmitted disease or a urinary infection, I have had 2 urinary infections in the past, since all my problems and severe soreness started about 2 years ago. I am going now to see somebody at st thomas's hospital in london at the vulva clinic, I am hoping to God that something comes out of it that will help me, because I won't be able to live otherwise, its too severe. Please anyone that has read carefully and has understood what I am saying and what is wrong, please contact me if you are having similar problems or think you know how I can get proper medical help, and quickly too. Thanks guys

Are you on birth control pills? Or any other form of contraception? I have been miserable with all sorts of problems for 5+ years now. I have had chronic yeast infections that have all but ruined my life. I have had UTI infections, Bacterial Vaginosis... you name it. I have been treated homeopathically as well as with prescription drugs. I have had countless tests (many of which were very uncomfortable) and been to dozens of doctors.
Like you, I have not slept around. I've only had 1 partner and he has been tested. I have been tested for STD's as well and in fact, many times I go to the doctor with a problem and he/she tells me that everything looks okay. This frustrates me because clearly having pain is not okay!

The ONLY thing that has seemed to slow down / lessen the intensity of all this misery was going completely off birth control. I used to be on birth control for severe menstrual cramps. Once I stopped, it took about 4 months for anything to happen, but my pain/itchiness/soreness actually started to go away and has been less frequent. I still have problems from time to time, but at least it's not every day.

Try removing anything that could be upsetting the hormonal balance in your body. Go off any kind of herbal remedy if you are on anything AND definitely go off birth control if you are on it.

I am sorry you are sick too. My boyfriend has been understanding about all of this, but I know how horrible it makes you feel, both physically and emotionally. I feel guilty for not being able to give him a "normal" sex life.

hiya. At last someone who understands! Thanks for writing on here. I have actually recently decided to come off the pill I was on as well. I have been on it for virtually the whole time I've had this hell but I think it started a month or so before I was on the pill, but no where near this awful pain I have now, I'm still going to try it though because its so severe. I haven't noticed much change yet, but its only been a month or so. Right now, all I can do is sit at home trying to find a solution. I am desperate, want to go private because nhs are to slow and don't really care. Keep me informed please if you find anything that may help because I am willing to do anything. X

I am going through the problem right now. :(
I am supposed to be going on vacation next week and I know it won't feel like vacation if I am going through this crap the entire time.

Since being off the birth control, I have problems from time to time, but as I said before, it's not nearly as frequent. Hang in there... you and I have no choice. In about 3 or 4 months, hopefully the birth control will be out of your system. Then your body will have a chance to heal itself and get back to normal. I think a lot of our problems have to do with the sensitive hormonal balance in our bodies. We probably are both very susceptible to being thrown out of whack. Birth control is poison for people like us.

Obviously, even my monthly cycle throws my body off sometimes and I still have issues. High stress effects me too. I think stress, lack of sleep, combined with my monthly cycle hormonal fluctuations can cause a problem for me. It used to be every month I would suffer horribly and then I would get about a week in between of having mild symptoms. Then it would come back with a vengeance.

I find the problems are the worst immediately preceding my period. How about you?

As I said, I am going on vacation next week so I won't be able to connect to the internet. Keep in touch though...

hey. Hope your vacation goes OK. I went 2 tunisia last year in the summer, I knew I'd be in agonising pain but I went for my fiancé as he wanted a holiday so bad. I loved the holiday but it was horrible also, I was in pure agony on the way there especially, on the coach to the hotel I was crying as it was just so bad. I had a urinary infection just before the holiday so that made the pain worse and since that infection the pain has not died down at all, feels as if I still have one.
can I ask have you had any infections? I've had 2 very bad ones. I also have an over-active bladder that makes me constantly, I mean constantly go to the toilet. I drink as any normal person would each day. I need the toilet sometimes and it hurts when I go even more and also it can take me five minutes to do a drop of urine. It's getting to me so bad. I always have to plan things so I know I have a toilet to go as quickly as possbile. I also have a bad tummy daily so that doesn't help. I am trying to get through 2 doctors that its all got to be connected, the sorenss (and all the pain), the toilet troubles with weeing so little at a time and going so much and the bowl problems too. Have u any of these or similar? And what have doctors said?
this is a bit personal but can you have any kind of sex with your boyfriend now the pain is a bit less than before. There's no chance in mine even being able 2 touch me anywhere around 'there'. If you don't get this before your vacation don't worry, just hope you have a nice holiday.
if you want to talk to me and keep in touch and give advice, I'll either give you my email or maybe my Facebook if your on there and we can talk privately. Be nice to talk to someone privately about this! x
keep smiling, I am trying to! :)