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Hi there I am feeling so deperate not knowing whats wrong with me and praying someone can help? I am 23 years old and I have two children with my partner of 8 years. My general health and wellbeing seemed to deteriorate massively after the birth of my youngest, although I have been suffering "cystitis" like symptoms on and off since I was 16. My symptoms include painful urination - this can vary week by week sometimes day by day, from a mild sting at the end of urination to burning and hurting so much it makes me cry and it used to come and go but for the last few months has remained constant. Sex is extremely painful my vagina feels very sore, tender and sensitive which is why it hurts but I also occasionally get pain in my pelvis in certain sexual positions and have to stop. My vagina hurts so much even if I haven't had sex for weeks again this varies, sometimes its just an unpleasant feeling in my vagina, other times its like sharp stabbing, throbbing pains I am unsure whether this is my vagina or urethra or even both! I often wear no underwear, and cannot sit for too long when this happens. I also have excessive vaginal discharge, it is white or clear but sometimes yellowish and I have had it tested and results are normal! I have had these symptoms on and off before, but since february this year they have been constant and getting worse. I have had many painful pelvic examinations and trips to GUM clinics even though I've been with my partner for 8 years, the last time I saw a gynecologist he said although I was sore he could not see anything else wrong that visually everything was normal. He also performed a high vaginal swab and the results came back normal. I have had many urine tests, some have come back positive for infection and I have had antibiotics, but most come back negative. My last urine test was negative, I have been on many antibiotics over the years even when infection has not been present. I recently had a cystoscopy, again the urologist could see nothing wrong with my bladder. I have had a vaginal ultrasound, again normal, no cysts or anything. My gp had another look at my vagina last week, and said I am now suffering vaginismus, but I think this is the result of having this pain for so long rather than the cause as I never used to have this problem, but all the other symptoms I've mentioned have been present.  I unfortunately caught chlamydia at the age of 16 when I first met my partner, we were both treated but then I also got pelvic inflammatory disease, or was told that's what I had, and we were treated for that also. I have had a few urine infections that have been treated with antibiotics. I had a "missed miscarriage" when I was 17 but then went on to have 2 healthy children. In the last 2 years I have had chronic pain in other areas and have been diagnosed with fibromyalgia, and a connective tissue disorder. I also get skin rashes consistent with lupus although a skin biopsy and blood tests showed I do not have lupus. I also have been diagnosed with IBS as pelvic exams have shown I have been extremely constipated, but I also get spells of diorreah - I don't know if this is related to my "cystitis" problems, which out of all my problems bother me the most and are making me feel quite desperate. I dread going to the toilet as it always hurts and nobody can find the answers I just don't know what to do anymore! Any advice greatly appreciated thank you

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Hello butterfly,

You have so many symptoms it very difficult to know where to start.  Diet and exercise is crucial with any health deficiets.  Find out if you have any allergies to foods and if you do get them out your diet.  This will clear up constipation and diarreha and help to keep your gut working properly.  If your gut isnt' working properly, you'll have problems digesting and absorpintg food which means you're not getting the nutrients you need to keep your body running.  As this continues, disease sets in.  You need to find a homeopathist or nutritionaist (dietician) who can help you whether you can afford it or not.  This is paramount.

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Have have you ever taken cipro or levaquin, I had severe IC from both and now have neuropahty all over me plus inside of my bladder and vaginal areas. It happened after I took these drugs. They are also given in IV when we have operatoins.. Please check if you have taken these. When I pee the pain is SO bad when I finish peeing I sometimes pass out.


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Intestticial Cystytis is what I think you might have. I have this disease since 11 yers now but I am lucky in 1 way "IC" go back into remission for few years after 6 months of therapy. Pay attention what you eat, IC flare up with acid-spicy food also with anti-inflammatory Motrin... and food who have high level of potassion like babana, spyce and salt and pepper. Basically for the time of your flare up eat bland food and write everyday if you see improvement or if you get worse. Look at Interstitil Cystytis website to print the IC diet. I am just surprise That your urilogist did not talk about it and if you did get a cystoscopy and don't have "ulcere Hunner" inside that might be why he sais everything is ok but it is not.. Interstitial Cystitis should have many name for the dissease because it flare up for everybody in a diffenent way. Try Cystoprotek it does work for me it help to keep the bladder lining healty and when IC flare up I take Elmiron/Ditropan/Immipramine. Good Luck

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I have recently seen a pelvic pain specialist with a highly accredited medical system. Upon my visit he explained to me that recent studies have shown excessive antiboitics make the gastro-intestinal and reproductive system lag, and it could take awhile for the system to re-correct itself. There are several gov funded medical studies happening in Chicago now to fibd more information aboit this 'phenomenon'
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