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.

Quote:

---

Originally Posted by weseestars

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 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