Neurogenic Bladder? UTI? Chronic Pelvic Pain?

[mpx1]

Hey everyone,

I'm a new member in this forum and hope to get some answers to my questions or at least experiences from other members to help me cope with my symptoms.. I am 26 years old.

I've waken up 3 months ago with pelvic pain on two sides of my (left and right) pelvis and pressure in my pelvic area (Thought it was my ovaries causing me pain). This feeling lasted for 4 days and got worse, I thought that something was going to jump out of my pelvis and I needed more time to pass urine and a weak stream. Went to my gyn who didnt find anything suspicious in my ultra sound, nor in my urine. Went to my GP who also didnt find anything im my urine. Next day went to another GP, an Urologist, another Gyn. GP and Urologist said that it was an UTI. Gyn didnt find anything and said Urine was clear (on the same day!). I took anitbiotics and my symptoms vanished for 2 weeks completely. Since then until today I have the same symptoms every single day. The pain and pressure and discomfort in my pelvic area are driving me nuts. I had 2 MRIs of my pelvic area with no worrying results, 4 Urine cultures all negative and other tests with my urine (chlamydia, ureaplasms, mykoplasm, urine sediment, urine cytology), several transvaginal ultrasounds with no worrying results and tests for bacterial infections of my vagina and uterus all negative, blood tests all negativ including Ca125 which was 5. I begged for a Cystoscopy and finally my urologist did it. Also had an urodynamic study on that day prior to the cystoscopy. He found out that I had high pressures in my bladder while storage of urine. Also my bladder was trabeculated but didnt show signs of infection (according to him). The trabeculation was not significant in MRI and ultra-Sound which is why I am confused. I also am confused that I have these symptoms every single day.. I cant cope with them anymore. He told me that I had to see a Neurologist to rule out that I had Multiple sclerosis. I had MRIs of my spine and head all negative for anything worrying.

Tomorrow I will have an appointment in a specialized clinic (Neuro-Urology) which will perform Video-Urodynamics.

I'm really confused and worried as to why my symptoms are so steady. Why did they resolve after taking antibiotics but antibiotics dont help me anymore? People with neurogenic bladder or dysfunctional voiding dont really talk about pain and pressure in the pelvis to be a constant symptom and problem. I also dont think that I have IC as he didn't find any signs for infection on my bladder wall... I am worried that I am missing something and that the pain and pressure problems arent originated from my bladder, but other parts of my pelvis? Also I cant find anyone with the same problems (constant pelvic pain and pressure without someone finding anything).

I would love to here your thoughts on this!

[Lyndy]

Hello mpx1

I am sorry that you are having such a rough time and you are right to keep going to try to get to the bottom of it.

But it would be impossible for any one here to give a medical opinion.

I hope you find some answers very soon.. best of luck xx

[Tesla_7US]

mpx1, Reading what you're experiencing reminds me of my own experience. Have you specifically seen a GYNECOLOGICAL ONCOLOGIST? Have you had CT/PT scans? I went to 5 doctors over a 2 year period. Misdiagnosed by all of them. DO NOT GIVE UP. Your body is screaming for help. Trust your instincts.

[mpx1 in reply to Tesla_7US]

Hey Tesla,

Thanks for replying! Yes I even had two MRI‘s of my pelvis. Both radiologists didn’t find anything worrying in my pelvis! Because of my bladder problems I’ve been to a clinic yesterday where they found out that I have a neurogenic bladder but they don’t know why because the other MRIs of my spine and head didn’t show anything either. The Doctor told me that the pain and pressure is resulting from my bladder cramping every few minutes while filling. I am confused because nobody with bladder problems is talking about pelvic pain or pressure except for people having IC. But IC doesn’t suit to my symptoms too. I don’t really know what is going on to be honest. It came out of the blue and just doesn’t go away..

[Tesla_7US in reply to mpx1]

Has anything in your diet or medication changed?

[mpx1 in reply to Tesla_7US]

No nothing. I only take birth control for 10 years now. Now I am taking Mictonorm Uni which is an anticholinergic drug, but it doesn't help at all with all the pressure and heaviness within my pelvis. I visited another gyn and he advised me to do a diagnostic laparoscopy. He thinks that I might have Adenomyosis and Pelvic Congestion Syndrome... but my Radiologist said that the veins in my pelvis all look normal.. still searching for answers. Thanks for your replies!

[Tesla_7US in reply to mpx1]

Don't give up. Find the root cause for your symptoms. Get multiple opinions if you need to. The biggest regret of my life is having been repeatedly misdiagnosed over the two year period it took to discover I actually had OC. If it had been caught sooner, I would have had a greater chance of not dying from this. 😪