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 (http://www2.oprah.com/health/oz/ask/oz_ask_main.jhtml)

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 (http://www.nhsdirect.nhs.uk)
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 (http://www.healthsquare.com/fgwh/wh1ch05.htm). 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 (http://www.aafp.org/afp/990315ap/1547.html)

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.

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 fiance 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 doesnt 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 hasnt 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 fiance, i can't look at starting a family etc.
i just dont 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 threatning 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 fiance 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 definately isn't!
Jen
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! :)

My vacation was ruined by my problem. The whole damn week was ruined! I had gotten a yeast infection, then a Urinary tract infection and then just pain. I am so angry right now I could spit nails.

When my problem flares up I pee (or wee) constantly too. It's like every half hour I have to go to the bathroom. Sometimes I flush the toilet, wash my hands, and feel like I should turn around and go back and pee again. I feel like I have never completely emptied my bladder. This horrible feeling usually happens towards the halfway point of my flare up. While this constant sensation to pee is happening, I usually have tenderness on the outside parts of me down there. When I pee, it burns, and it takes at least a few days to get better. I hate it. It's complete misery.

On top of all of this crap, I have stomach problems too. My stomach is very sensitive and a lot of times, I have the runs too. I would say it is normal for me to have a sick stomach at least 3x a week. I get bad cramps and diarrhea. It's awful. Like you, I always make plans around having a bathroom nearby. It's a terrible way to live and I am sick and tired of it.


I really have no idea what is wrong with either of us. The only thing I can think of (and I've done A LOT of research on this), is that the flora in our digestive system is screwed up. There are bacterias that are in a constant balance that can be thrown off. This bacteria problem (in the bowels) can actually cause yeast infections as well as stomach problems.
I went to a specialist doctor who told me to take lactobascillus acidophilus (a dietary supplement) every day. It's the good bacteria found in yogurt. I did that for awhile but then I got fed up. I don't know if it will work for you, but you may want to try taking the Lactobascillus Acidophilus. You should be able to get it in the vitamin-section of your drug store.


My boyfriend and I do stuff every once in awhile. Not as often as a normal couple. I can't do ANYTHING when the flare ups happen. In between flare-ups we try to have a normal sex life but we are very cautious about stuff. Nothing rough... very careful.

I think your problem is even worse than mine (if that's possible!).
You might have more than a few things going on at the same time. I would say the best advice I could give you is to 1. Go to a Urologist (I did this years ago) and rule out any problems with your urinary system. 2. Stay off the birth control and don't go back on EVER 3. Take lactobacillus acidophilus supplements. 4. Drink lots of Cranberry juice (it's supposed to help cleanse your urinary system)


What is your email? I don't have Facebook. I hope my advice works for you.
I have a question, just out of curiosity... were you on antibiotics a lot or for a long period in your life? I know someone else who has similar problems to us and she as well as I both had been on antibiotics for a long time because we both had Lyme Disease.

I am trying to connect the dots since the doctors I've been to haven't been able to yet!

Hi email me at [email protected]
If u get fbook let me no.
We can talk privately on my email.

Hi,

I'm very sorry to hear that you are having this problem. I struggle with chronic UTIs (at least, I think they are UTIs- my doctors aren't so sure anymore) and have a good friend who also struggles with frequent urination and urinary pain. It's embarrassing and worse, it takes away from your life! Don't give up the fight.

I think the suggestions on the posts here have been really good. But I want to add one. My GP in the US recommended a supplement that has reduced the frequency with which I get infections, the amount of antibiotics that I need to take when I do get them and the amount of pain that I have. It is called "D-Mannose". The urologist I saw (not the most amicable person) said that there is no medical reason why D-Mannose works, but I absolutely would not be able to live without it. I cannot recommend enough giving it a try. It can't hurt, and the benefits have been tremendous for myself and many others.

Although I think my problems are bladder-related, as I mentioned that is not certain as I am undiagnosed. Things that help me are drinking plenty of water, getting regular exercise, infrequent sex, eating healthy food and not drinking coffee, alcohol, carbonated beverages or citrus drinks. As someone in my early 20s, I find this whole thing really unfair too.

Good luck!

Jennyclaire - I have exactly the same problem! Ive had this "U.T.I, water infection" what ever it is for over 3 and a half years now, and I also go through times where I feel depressed and just want to lay in bed because even walking can feel uncomfortable and painfull. I also have a long term partner, and his sex drive is very high, but evrytime I have sex, I end up with a yeast infection (thrush), and when I go pee, I could cry! Actually, I DO cry!
Ive been to the doctors sevrel times, and they just put it down to a water infection and put me on the same medication as they always do. "Trimithrepyn" Which might help for a day then the Stinging and sometimes swollen ness comes back.
I have been trying to find out what this is for years, which brought me across this website, which I am glad to know I am not the only person in the world who also has this (Of course I wouldn't wish this upon anyone... )
I also become very red, sore and the feeling of *Rawness* (being the Key word!) Before my period.
I have not yet been to a gyno, but would like to know how you got on and what the outcome was.
My mother actully used to have the same problem when she was younger, and turned out that her Urethra (The whole in which you urinate out of - not your vagina) was slightly smaller and thinner than normal with a kink in it. Which means that every time you would empty your bladder... You're not really flushing everything out, some urine back tracts back into the bladder, causing infection. In my case, it might be hereditory.
I haven't yet discussed this with MY doctors yet, but it may be possible that this could be the reason for all OUR symptoms.
I'd love to hear from someone, and if anyone cures this problem I'd obviously love to know how! Haha
Weseestars - I find this thing totally unfair too, as I'm still in my teens!
Good luck everyone, I hope we can all cure this VERY soon! Xxx

Hiya, I totally and utterly understand how you feel! :(, I'm 18, nearly 19 and my god... this pain is excrusiating! I have to say it all began when I just turned 17 and started having sex. After a couple months I started finding it sore to Pee, and the usual UTI symptoms. I went to the doctor, who found I did have a UTI, I took the tablets and it went. However the pain after sex still occurred on occasion, (I often found I only got the pain when he went on for longer than 20mins.) so I therefore put it down to friction. After 5 months I split up with him, and at 7 months I starting seeing my current boyfriend now. (the couple months of no sex was a BIG relief). I have ever since then been having UTI symptoms. And been to the dotors so many times, yet they always just gave me the same treatment for UTI, until they started realising I didn't have that! then I got treated for thrust, but the urine test ruled that out as well, so then I got sent to a gynaecologist, who basically said that it was just the skin rubbing and becoming sore, so suggested lube. Thing is I haven't had sex since then and the pain is still here! Particualarly if I drink alcohol.! It can get so bad, I can't sleep, I spend hours thrashing about trying to deal with the pain, until it eventually subsides again :(. I couldn't go to college this morning, because the pain was just too exscruciating. Its much worse when I go to pee as well, as it seems to set it all off again. I can't deal with it anymore! I just want to be a normal 18year old, that can have sex and drink alcohol. Im getting the doctor to ring me this morning, but I'm hardly hopeful :(. I did notice like little lumps on the entry of the vagina, well all over really, but I swear they have always been there? And I've been checked and noones ever picked up on them?
In terms of the pain, I sometimes find if I run an ice cold bath, and sit in it for 5mins, the pain subsides a little. -if that's any help?
Otherwise like you, I'm completely stumped... and its ruining my life! :(

Hi I have that same problem you are in sometimes at this moment I know how you feel what really helps me is drinking a lot of cranberry juice.. It helps, it clears up within a few days.. Good luck

Hi JennyClaire,
It's been more than a year since your original post but I thought I would write something in the event you are still looking for answers. I do not have the problem you are speaking about, but I have heard about a similar problem. It's a problem caused when trying to have intercourse. Part of it is mental, while the other part is physical. Many women experience extreme pain while having sex, yet they have no infections to speak of. I forget what it is called, but I actually had a friend who had this problem. All Dr.'s kept dismissing the pain. Dr.'s see tons of patients everyday and many patients are hypochondriacs. That doesn't mean that it's justified, but it's what happens. Plus, many dr.'s have superiority complexes. They're the dr. so they know what's wrong w/ you. You couldn't possibly know what's wrong.. . Anyway.. . My girlfriend eventually found someone that paid attention. She kept going to the same guy for months. He eventually suggested that she get injections of Botox in the vaginal area. She went for the procedure and it worked. She's able to have intercourse and loves it. She actually is able to even speak about it freely. Before, she would never speak of it except for her two closest friends and partner. BTW - She also visited a therapist for quite some time. The combo probably helped.
I'm not saying that you and her have the same thing, but I think you should look into it. Another suggestion is to find a gyno that you're comfortable w/ and keep visiting that same gyno. It's true that you should always get a second opinion, but sometimes you need to keep seeing one good dr. for him to pay attention. If you keep bouncing around from doc to doc, no one will find a pattern and you will be dismissed. However, if you find a good doc and he recommends something that may not work, visit him again. Try it for at least 3 tries. He'll eventually realize that you're serious and not just a hypochondriac or someone looking for pain pills.
Be persistent and consistent
I've had problems w/ chronic headaches since I was in the 6th grade. My family practitioner dismissed them like it was nothing. I went to a couple different doctors until finally I found a doctor that really seemed to pay attention to me. He may have been acting.. . I don't know.. . Even though he didn't make any suggestions that helped the first visit. On the second visit he ordered several tests to appease me and found nothing, but on the 3rd visit he realized that I wasn't playing, nor was I a Hypochondriac. A light went on in his head after asking more questions and he ordered specific tests to which led to him finding my problem.
Be persistent and consistent. Please don't give up.
My love goes out to you.
Stay Strong Girlie

Bye
Vanessa

Hi, I'm new to this blog but I was wondering if jennyclair found a cure? I am experiencing similar, well exactly the same problems. My doctors keep telling me it's a minor infection but it never goes away with antibiotics. I've been suffering for about 7mo with this and I can't get anywhere with my doctors. I've been trying herbal remedies but nothing works, I have to be properly diagnosed to know what I'm battling. I don't know what to do? Does anybody have any advice.

Hi Healthyself,

Your post reminded me to look again at my post on here oh so long ago... and re-reading it made me realize just how far I have come as my bladder pain is fortunately in remission at the moment. I am sorry you are having this problem.

I can share some examples of what I have done that has helped, if you wish. I would need to know - why do your doctors say it is a minor infection? Are you testing as having a bladder infection? If so, which test are they doing? Is it the dipstick test or the test that takes several days in the lab, to see if anything grows in your urine specimen?

If you are testing positive as having an infection, I think you need to find the right antibiotics to treat it by knowing exactly which bacteria is causing the infection. Your doctors should be able to do this.

If you are getting repeat infections, or if you are experiencing pain without testing positive for an infection, I recommend you look here if you haven't already: www.ic-network.com/ I could not live without this site.

Best of luck.

Hi Healthyself,

Your post reminded me to look again at my post on here oh so long ago... and re-reading it made me realize just how far I have come as my bladder pain is fortunately in remission at the moment. I am sorry you are having this problem.

I can share some examples of what I have done that has helped, if you wish. I would need to know - why do your doctors say it is a minor infection? Are you testing as having a bladder infection? If so, which test are they doing? Is it the dipstick test or the test that takes several days in the lab, to see if anything grows in your urine specimen?

If you are testing positive as having an infection, I think you need to find the right antibiotics to treat it by knowing exactly which bacteria is causing the infection. Your doctors should be able to do this.

If you are getting repeat infections, or if you are experiencing pain without testing positive for an infection, I recommend you look here if you haven't already: Interstitial Cystitis Network - Bladder Pain Syndrome, Painful Bladder Syndrome, Hypersensitive Bladder Syndrome Information & Support For Patients & Providers (http://www.ic-network.com/) I could not live without this site.

Best of luck.

P.S. It's the support forums on the website I found the most helpful.

I used to have a chronic vulva-clitoris pain and what helped was this:
Cortisone ointment on labia 4 times a day for a week, then Gold Bond powder on it, and at night Aveno baths. Now I'm healthy!

Hi I think I have exactly the same problem! When I was surfing the web I came across something called vulvodynia. Maybe you have that! I am constantly depressed and I just need to know, did you find a cure?

I have not found a cure yet. I went to a doctor that put me on a daily dose of Diflucan for about a month. That seemed to do the trick.
I literally had many months of being pain and misery-free. It was wonderful. After about 3 months passed though, things went back to the way they were. I've noticed something along the way and maybe it is the same for you... I have a sensitive stomach and every time I have a sick stomach (diarrhea), the misery with my vagina seems to kick into high gear. My next thing to try is a Center for Vulvovaginal Disorders that my mom discovered after seeing something on TV about it. Their website is http://www.cvvd.org
Life is awful with whatever we have... I refuse to give up! I am hoping to make an appointment and get some answers. You should try getting to this place too. Apparently, vaginal disorders is the only thing they deal with. I don't know how desperate you are, but it is certainly worth the expense of making the trip. I wish you the best.

I have it also and I'm only 17. Idk what's going on and I'm scared to tell anyone. I haven't been check or anything yet because I'm scared of what it will be but it's the same symptoms everyone on here is saying..

I feel like I have to chime in because I've had this exact problem for 7 years. A soreness, burning, sometimes shooting pain in the vagina/ urethra area. I also had urinary frequency and burning while peeing. For a long time I just kept getting tested for a uti's, or bacteria infections, and std's but the results were always negative. Also it was imposible for me to have sex with my boyfriend. He literally couldn't get it inside me, my vagina literally felt like a brick wall! Anyway after lots of searching I found out I had/ have Pelvic Floor Dysfunction. My muscles in my pelvis were spasming. I found a physical therapist who specializes in treating it and she literally would work on the muscles in my vagina until they loosened up. It took me 6 months of physical therapy to finally be able to have sex, but it worked!
The reason the pain is so bad is because the muscles squeeze around the nerves down there. And we have A lot of nerves down there! My absolute worst symptom was sometimes I'd get a stabbing/ electric pain in my clitoris. I couldn't move at all without getting it and I would just cry in bed and try not to move.

Back to what worked, I got physical therapy for 3 years straight. And now I just go occasionally. I haven't needed to go in several months. Things are so much better now. But I do still have a mild burning down there from time to time. But not nearly like it used to be. I use to have extreme burning all down there and even on my buttcheeks and upper thighs! I had to lay down with an icepack on my crotch all the time. Also just putting it out there that vestibulitis, vulvadynia, pudendal neuralgia are all basically the same thing. It's the nerves down there being irritated and inflammed. Some people have it worse than others, and there are different causes for it. The most common cause is spasming muscles down there. A pelvic floor physical therapist is a good place to start to feel better. But I tried a lot of things! What also helped me (but I wouldn't try it first) is injections of steroids and anti-inflamitory medication into my vagina. Also I've had steriod shots into my back which really helped. Because come to find out I have fractures in my back. And that actually probably played a role in why my pelvic muscles were so tight. Anyway I hope this can help someone that is looking for answers. The nerves and muscles down there can definitely be the reason for the pain.

Also someone mentioned they had a friend get botox injections down there. I have never tried that but I have heard that it can help. Because botox stops the muscles from spasming.

There are other more simple things that can help like I noticed exercising made my pain worse, I guess because it was tightening the muscles even more. Sit ups were the WORST thing to flare me. The only sort of exercise I can do that doesn't flare me is walking.
I hope this helps someone.

If you have this problem try to Google in your area for a physical therapist and a doctor that treats: "pevlic floor dysfunction", "vulvadynia, "vestibulitis". Hopefully you can find help!

I forgot to mention when you are sitting down, it can make your pain worse. That is a way to test if you have "pudendal nueralgia". If you stop sitting and your pain lessens then your nerves are probably the reason for the pain. I definitely don't sit nearly as much as a regular person. Like when I'm on my laptop I never sit, I lay down. Sitting as little as possible is another change you can make and your pain can lessen a lot. Because when you sit it puts a lot of pressure on those nerves and irritates them.

I had the same problem and all sorts of things were tried. Eventually we tried Amytriptilene and it worked. I know this is an anti.depressant but it did the job. Actually, Neuralgia was mentioned as where there are nerve endings this can affect anywhere. Good luck jeanwil