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The short version:

I am a 21 year old female and have had bladder issues (pressure, urgency, nocturia, urethra burning/squeezing feeling, difficulty urinating) for two years that won't go away and seemed to have begun after I became sexually active. At first, the doctors thought it was a UTI but the antibiotics stopped working after a while. I've been to numerous doctors (PCP, urologist, OBGYN, gastroenterologist, neurologist, chiropractor) and had many, many tests - yet no one can figure out the problem. I was treated for endometriosis and HPV (high-risk, precancerous cells) last year in March and told I have dyssynergia and vaginismus. My brain MRIs show nonspecific white matter disease - but I'm told this is insignificant. I do not have nor have I ever had itching or any form of incontinence. I am told I do not retain urine and do not have interstitial cystitis. No other STDs, infections, etc. have been found. What could be going on?

The long version:

My bladder problems started in October of 2011 after I became sexually active in a monogamous relationship - they felt like symptoms of a UTI. At first, I thought it was "honeymoon cystitis," so I started urinating before and after sex and that solved the problem completely. In December of 2011 I had a new partner whom I have been in a monogamous relationship with since then. Still no problems whatsoever. Then, in February 2012 I started having major burning, bladder pressure, difficulty urinating, etc. (classic UTI symptoms). I visited a walk-in clinic, they administered a dipstick test and I was prescribed antibiotics which helped but that I had an allergic reaction to. I was also checked for anemia and that came back negative. My symptoms came back almost immediately after stopping the antibiotics, though, so I visited a few more times (and even tried a new clinic) and was prescribed more antibiotics. They helped but did not eliminate the problem. During this period I once felt very sick with nausea and fever (along with the continuous UTI symptoms). I tried reading up on UTIs and how to get relief so I invested in cranberry concentrate, cranberry pills, AZO, Cystex, and the like - none of which helped. Around February 2012 I also started taking standard, generic birth control pills for a few months and then switched to Depo, which I stopped taking in December 2012 (so it would wear off in March 2013).

Later on in the year, around July of 2012, I started seeing a nurse practitioner at Planned Parenthood. They also tried antibiotics twice and after a urine culture discovered there was no bacteria present. Although, they said I had so many white blood cells present they thought it was gonnorhea or chlamydia but I tested negative for both. The NP began to think it was interstitial cystitis and told me to see a urologist (which I could not afford at the time).

At this point, I was feeling very fatigued, week, having frequent headaches and trouble sleeping, my memory was getting worse, intercourse was painful and I was just feeling generally ill. I was also having sudden sharp, stabbing lower back pains on my left side. I tried an at-home cleanse that consisted of nothing but homemade vegetable/herb broth, alka-seltzer water, and water with cranberry pills at scheduled times for 12 hours straight. This helped with the burning/squeezing feeling in my urethra, but only during the cleanse.

In December of 2012, I got insurance specially for this problem because I could not afford to keep paying out of pocket and I immediately visited a PCP.  Once I visited my PCP they ordered about 20 different blood tests (such as CBC, food allergies, etc.) but they all came back normal. During this time, I bought urinary tract complex, d-mannose, and probiotic supplements and oil of oregano, hoping they would help (they didn't). I even tried treating myself with Monistat in case I had a yeast infection (even though I didn't have the common symptoms, such as itching, I was desperate for any kind of relief).

I was then referred to a urologist in January 2013. By this time I was having less burning, but still the squeezing feeling in my urethra, and more constant bladder pressure (especially at night and in the mornings). I could never get a good night's sleep. I went through urodynamics tests and had a cystoscopy and ultrasound of my bladder. I was told that besides having "dyssynergia," my urinary tract system was "anatomically perfect." Because of my ongoing bladder problems they tried a couple different overactive bladder medications, Toviaz and Enablex, which didn't help at all. My urologist also ordered a CT scan of my abdomen and pelvis with and without contrast, which came back negative.

In February 2013 I started having panic attacks, couldn't breathe, was grinding my teeth, just having classic anxiety symptoms, and they put me on Prozac and Xanax (just for a month until the Prozac kicked in). I was hesitant to use these drugs but the Prozac helped with my anxiety.

The urologist referred me to the OBGYN in February 2012 and a pap smear revealed HPV with precancerous cells, which I had LEEP surgery for in March 2013. During the laparoscopy I had at the same time as the LEEP, they also found "quite a bit" of endometriosis. Once the endometriosis was removed I was put on continuous birth control, which I have been on ever since (at first it was Loestrin but now I'm on Gildess). I was also told I have vaginismus. The week after my surgery I thought my bladder problems were gone, but now I think it's because I was on antibiotics and Percocet for that week, since my symptoms immediately came back after I finished the pills. My last pap smear in August 2013 came back normal. My OBGYN said there is nothing else he could do to figure out what is causing my bladder problems and referred me back to the urologist.

I asked my urologist if I could possibly have interstitial cystitis and he said that I do not (I also tried home remedies and the "interstitial cystitis diet" which didn't help at all). He referred me to a neurologist who ordered MRIs of my brain and lumbar, thoracic, and cervical spine (all without contrast) in July 2013. My thoracic and cervical spine both came back with possible hemangiomas in the T2 vertebral body (which I am told are harmless) and my lumbar came back with a "very mild disc bulge, congenital changes, mild ligamentum flavum hypertrophy and face osteoarthropathy with very mild central canal stenosis" in L4 - L5. I was also told this was nothing to worry about. My brain MRI came back as: "ill-defined increased FLAIR signal in the supratentorial brain bilaterally, including adjacent to the posterolateral aspect of the temporal horn of the left lateral ventricle as well as subcortical right front white matter. Findings are consistent with this representing a mild degree of nonspecific gliotic or less likely inflammatory white matter disease … the findings could represent an early or subtle demyelinating process, vasculitis, inflammatory or less likely other white matter process … Impression: nonspecific, chronic-appearing white matter disease." The neurologist said the findings on my brain MRI were insignificant and I had an EEG test that came back normal. He tried putting me on Cymbalta (substituting the Prozac) since he suspected I had fibromyalgia, but that didn't work at all so I went back to taking Prozac.

I needed to go to a gastroenterologist because I had blood in my stool and other problems (such as bloating, stomach pain, and nausea). I had a colonoscopy in September 2013 which just found small, non-bleeding internal hemorrhoids. I had a few tests and my iron binding capacity was out of range (at 466 H) which I'm guessing isn't significant.

I ended up getting another MRI of my brain three months later, in October 2013, with and without contrast. This came back as: "signal intensity adjacent to the posterior aspect of the temporal horn of the left lateral ventricle is slightly less prominent than on the prior examination. This is most likely due to technique differences, with some superimposed artifact, on prior study, but could much less likely represent interval improvement. There is also ill-defined increased FLAIR signal in the subcortical frontal white matter. Findings are consistent with very mild nonspecific chronic appearing white matter disease." I visited a different neurologist who was extremely rude and didn't take me seriously or try to help at all - he told me to see a therapist. I was later told by my PCP that everyone has problems with this neurologist and he frequently misdiagnoses his patients.

At the insistence of my urologist in November 2013, I ended up making an appointment with a third neurologist, but could not get an appointment until December 2013. My urologist also gave me samples for Myrbetriq. I also started seeing a chiropractor, mainly because I have mild scoliosis and had a tailbone injury when I was younger, but thought this might also help the nerves with my bladder (it didn't).

At this point my PCP thought everything was all in my head, and told me, "I believe your symptoms are very real to YOU," and advised me to see a therapist. I told her I never had this kind of anxiety and fatigue until my health problems started, and that the anxiety was caused by that, not vice versa. I had stopped taking Prozac several days prior to this appointment because it made me feel like a zombie, so she the then put me on another medication, Celexa. She told me this was an SNRI, but when I researched I found it was an SSRI (and it made me feel just as bad as the Prozac did). After a month on Celexa I stopped cold turkey (I know, not the best idea, but I dealt with the withdrawals for a month and then was fine). It was getting to a point where every time I went to see my PCP I saw a different person, who was not my actual doctor, and was basically told that they didn't believe my symptoms were real. I was trying to think of anything that could be causing my symptoms that I hadn't been tested for yet, so I asked for a lyme disease blood test but that came back negative. I also got a B12 injection hoping it would help with my energy levels but it made no difference.

I was able to get a referral to a rheumatologist in November 2013. The rheumatologist ordered numerous tests, such as a hepatitis panel and syphilis, tuberculosis, lupus, Sjogren's, and rheumatoid factor tests. The only test that came back positive was the ANA screen, which came back showing a nucleolar pattern and a titer of 1:40 H. The rheumatologist said this was insignificant because it was so low and the antibodies didn't match any in the reference range from the other tests I received. I finally visited a third neurologist in December 2013 to go over my second brain MRI results and he said they didn't mean anything. Also, in the beginning of January, I stopped taking Myrbetriq because it wasn't helping me. I currently feel all of the same symptoms (not as much burning, but some) and feel like I don't even have a desire to drink much water or anything anymore; I'm not sure if this is subconscious because drinking more puts a lot more pressure on my bladder, or if it's because I'm just not thirsty (even though I should be). I have to force myself to hydrate myself and it's difficult sometimes. I have a moderate amount of vaginal discharge, enough to where it's very annoying and I need to constantly wear a pad, but I'm not sure if that's from the birth control, since I never had that until I was put on the Gildess.

Again, I know this is long and not very pleasant, but I wanted to be thorough because I am desperate for an answer, or even a clue as to what may be going on. I am still having bladder pressure, squeezing in my urethra, painful intercourse, fatigue, etc. This has been going on for two years and it's negatively affecting my life in so many ways. Could there possibly be some type of infection that never went away and that won't show up in urine cultures or a cystoscopy? Could it be an STI/STD that I haven't been tested for or that is more rare? I was a somewhat sick child and also had some minor health issues as a teenager, I also was treated for ADD starting at the age of 16 but am not currently taking anything for it (although I would like to once I feel better). I don't think these would be relevant to my bladder issues, though; just adding it in, in case it helps.

Thank you if you took the time to read this. I am so far past my breaking point that even an idea as to what it could be would be a miracle.

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I am trying to think 'outside of the box' on this case that you have written about.  I am wondering it you have some type of nerve issue.  If you have any back pain, it could be a compressed vertrebrae that is causing an impingement on the nerves that lead to your bladder and uterus.  Since many other things have been ruled out, this may be an avenue to look into.  From the post you put up, I didn't see where you have been to a neurologist or a chiropractor.  Maybe see a chiro first thing and see if he/she can suggest any treatment.  If not, then see about getting into a neurologist. 

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Thanks for the reply! I did post it (in the "long version" section of my post), that I've been to three different neurologists as well as a chiropractor.

My first brain MRI w/o contrast came back as: "ill-defined increased FLAIR signal in the supratentorial brain bilaterally, including adjacent to the posterolateral aspect of the temporal horn of the left lateral ventricle as well as subcortical right front white matter. Findings are consistent with this representing a mild degree of nonspecific gliotic or less likely inflammatory white matter disease … the findings could represent an early or subtle demyelinating process, vasculitis, inflammatory or less likely other white matter process … Impression: nonspecific, chronic-appearing white matter disease."

Second brain MRI w and w/o contrast: "signal intensity adjacent to the posterior aspect of the temporal horn of the left lateral ventricle is slightly less prominent than on the prior examination. This is most likely due to technique differences, with some superimposed artifact, on prior study, but could much less likely represent interval improvement. There is also ill-defined increased FLAIR signal in the subcortical frontal white matter. Findings are consistent with very mild nonspecific chronic appearing white matter disease."

I had other MRIs of my cervical and thoracic spine but they just came back with possible hemangiomas, which I was told are nothing to worry about.

My lumbar spine came back as: "very mild disc bulge, congenital changes, mild ligamentum flavum hypertrophy and face osteoarthropathy with very mild central canal stenosis" in L4 - L5.

Going to the chiropractor hasn't helped my bladder and the neurologists all said that everything on my MRIs was insignficiant.

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I am so sorry you are having such extensive problems at such a young age! Have you found out anything?

 

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Thank you and no, I haven't. I just bought a new, better insurance that is effective starting next month and I'm going to try and see some new doctors and get a fresh outlook on this. The most recent finding is that I had urethritis and a urethral stricture, which were treated around a month ago. Although, I haven't noticed any improvement with any symptoms besides the difficulty urinating.
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You might want to see if might have interstitial cystitis but tests to see if it is IC are intense. UA w/culture, cystoscopy w/bladder distention and or biopsy.
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You might want to see if might have interstitial cystitis but tests to see if it is IC are intense. UA w/culture, cystoscopy w/bladder distention and or biopsy.
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Thank you but I've already had all of those tests done!
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Hi, cupacke, I'' a healer, can I ask , does it itch inside too? , what about overalll energy level?, and headache?, stomache? etc....
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Hi, there is no itching whatsoever. My energy is very low and I do have stomach problems, but the stomach problems usually only show up after I eat.
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Try bovine costrum and see matzia brizman in LA or Ruth Kritz who specialise in IC . One treats naturally and the other with high level antibiotics . Good luck !
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How about medications that affect peripheral nerves like amitriptyline., gabapentin, or Lyrica? Also, would chronic scheduled NSAIDS help decrease pain and inflammation?
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You probably have early urogenital atrophy associated with perimenopause/menopause related decrease in estrogen, or in your case at your age, hormone imbalance due to birth control or any other hormones you have taken that messed them up (i.e. Depo provera)  I had it too. Took 4 years for anyone to figure out what it was and I had same issues. My urine never really tested positive for bacteria but I had red and white cells, burning pain, spasm.  I saw  gyn,uro, derm, rheum, neph, allergy doctors and also had mri of head, neck, back and cystoscopies.  Tried many of the same things otc and RX you have.  Local hormones help some, but I am allergic to a filler in the creams so have to use sparingly.  The bottom of bladder and urethra come from the same tissue as the vaginal embryologically and when estrogen starts to wane, those cells scream out for it.  The only thing that works is to take hormones, local if you can, and then the systemic kind if you can't get enough locally to stop the symptoms.

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I have many symptoms related to your experience. Having Intercourse with my husband isn't enjoyable for me. I pay dearly with pain burning etc. I can't urinate but feel the need to and sit in the bathroom for 30 min. I'm 20 years older than you and I can only imagine how you feel. After my son was born I was having many female issues. I was complaining of pain in tummy and vaginal area. He was very big at birth. Needed c section didn't have one though. Dr couldn't be bothered. Tore all inside canal burned badly for weeks. Gave me all types of antibiotics inserted creams. Than I was told since he was second born and my mom was very ill I was seeking attention!!!!!! That was it. He pawned me off to his pa useless individual by the way. So saw a specialist in Brooklyn and she said I have vulvodynia. Post Sexual discomfort burning can't achieve heightened pleasure because of nerve damage. From all the meds you took for utis (have blood in urine for years can't figure out why. I leak and I leak from my vagina went for the tests thought I had a fistula from birth but noooooo so I walk around with urine leaking from my vaginal area). I accidentally discovered that years ago when I took Azo to relieve symptoms and I saw that orange all over my liner. Did a little investigation and viola I was right. So ask your dr about fibromyalgia and vulvodynia. I swear they use as experiments or make c**p up because they don't know!!! Good luck. God bless.
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Oh forgot part of the placenta was still in my body that's what all the cramps were from. I called and told dr he called me a liar. I was so angry and yet our hands are tied. We have no rights no evidence when a dr messes with us like that. That's sad!!! I haven't found a great dr ever!!!! I won't go to NYC too long of a trip and too uncomfortable. I want to enjoy my life with my husband especially my kids are in their mid teenage years. This is hurting my marriage because I just can't handle the pain after it's said and done. It's not him complaining at all.
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