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I've had pressure on my bladder for 14 months, help?!

Posted , 51 users are following.

Jaffatinx
Jaffatinx

In July 2013 I had cystitis for three weeks, the hospital gave me 7 days of trimethoprim and sent me home. After finishing the course, the burning etc had gone but I still felt a slight pressure making me feel like I needed to urinate all the time. This feeling stayed with me day and night for three whole months,many all the urine samples that were sent off came back negative for an infection. I had vaginal swabs done and they were clear too. After three months it slowly died off, and is now an occasional occurrence. Occasional being a couple times a week. I've since seen a urologist who did a cystoscopy and checked for interstitial cystitis but that came back clear as well. I then had a laparoscopy (for endometriosis diagnosed in 2011) and that all came back clear, my endo hasn't come back. This brings us now to the last couple of months, I've had thrush which was treated at home. I now have cystitis again, and I'm on trimethoprim 10 day course but it's not doing anything. I've told my docs this but they won't even see me, I had to go through 111 to try and get someone to see me. I've tried trimethoprim, citrofloxacin, nurofontaine (sp?) and metronidazole. 

Nothing is working. I take cranberry tablets to prevent uti's and moringa tablets to help fight bacterial infections as I believe it is bacterial. Sex can aggravate it, it's worse around my mid cycle and when I'm on, no foods or drinks make it worse. The only symptom is like a pressure on my bladder making me feel like I need a wee. It comes out of nowhere. I've seen three doctors and spoken to five, they're all fobbing me off now and I'm becoming depressed because of this. It's now affecting my work and my relationship. I really need proper help, what could it be? I don't feel like I'm ever going to be normal again

2 likes, 99 replies

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  • Polly47
    Polly47 Jaffatinx

    Posted

    I'm so pleased to read this, it's me exactly. I'll be asking about this when I'm at the doctors on Friday! Thank you 
  • cristi01314
    cristi01314 Jaffatinx

    Posted

    Hi. I've had this crazy UTI feeling for the last 13 months. It started April 24th and I just called my Dr and he called in Bactrum. Well a few days later I ended up in the ER with side pain as well. They did a CT and said I had a bad UTI and 2 non obstructing kidney stones and sent me home with Cipro. I then kept feeling like I still had a UTI after the Cipro, so I went in and saw my regular Dr and he prescribed Macrobid and referred me out to a Urologist. I went to see him in June but had to see the physicians assistant. She thought I might have Intersticial Cystitis and gave me some Aloe Vera pills for the burning and also had me try some Vesicure for OAB. I felt no better so the next week I made an appointment to see the Urologist. He said I had blood in my urine and wanted to do a CT scan to make sure the kidney stones that I have hadn't moved. So I did that July 7th of 2015 and my results came back with a mass above my bladder. In the meantime he had set up a Cystoscopy and biopsy which was done at the hospital on July 24th. He said after looking at my bladder with the camera that it was a normal as normal could be. I went back to the Dr on Aug 5th because I felt like I had a UTI and was again put on Cipro which I'm thinking may have been caused by doing the Cystoscopy. I still had burning for a few weeks after that and then it went away. He had me repeat the CT with contrast on July 28th and whatever mass he saw was no longer there. Kidney stones there and both are still non obstructing but have gotten bigger. Around November started having really smelly and cloudy urine and my back and sides were hurting so I went to Urgent care and they said I had a UTI so I was put on Macrobid. No burning just pressure and feeling like I had to pee every 5 minutes. Then again I started to feel like I was getting another UTI in February of this year so I went back to Urologist and he said there was blood in urine and he wanted me to do the KUB Kidney, Ureter, Bladder X-ray to look at stones. He was called to ER so had to finish up with the nurse. She said urine looked like I was either starting and infection or ending one and she called me in some Cipro and said they would send urine off for culture. They also started me on Toviaz for OAB. This was on Friday. I started the Toviaz on Saturday and it made me feel really weird. Fast heart rate and really flushed. I skipped it Sunday and took again Monday well it did the same thing and I ended up in the ER. They had me pee in a cup and said I had a UTI and to keep taking the Cipro I had been prescribed 3 days earlier. They also sent my urine for culture. The hospital called me on Friday the end of February to let me know my urine had tested positive for ESBL which is a resistant bacteria and that it was resistant to the Cipro I was taking. It was only sensitive to a few antibiotics and I was put on Bactrum DS double strength. I took that for 10 days and was to repeat my culture which I did with my reg Dr and a catheter sample at the Urologist and both cultures came back with no bacteria. I had no burning while this was going on at all. It started a few days before Easter which was March 27th and has been going on every since then. Not really any urge to pee and no getting up during the night it just burns after I pee for hours or days or weeks. I've had like 4 cultures since having the ESBL and all of them have been negative but I still have the burning. Every few days I feel fine. I just don't know what it could be or why I started getting these UTIs back to back. The one I got in April of 2015 was my very first one ever. I'm so frustrated and it's driving me crazy and taking a toll on my marriage. Someone please give me some advice or something.
  • meldob_68953
    meldob_68953 Jaffatinx

    Posted

    I have the same thing. I have the feeling I need to urinate all the time, I don't have burning when I pee but my entire vaginal area is sore and painful, I have had my Urine checked, no infection. I'm now waiting for my pelvic swabs to come back. They did prescribe me Pyridium to help calm the bladder and it does help a bit. I'm really worried that it's going to be something that knowing knows how to fixsad have you found any answers?
  • roie24331
    roie24331 Jaffatinx

    Posted

    It sound like same symptoms as me check interstitial cystitis (IC) or bladder pain syndrome
  • murnaloo
    murnaloo Jaffatinx

    Posted

    Has anyone been told the pressure was from fibroids? I've exhausted all possible bladder possibilities, but I did have very large fiborids, including one pressing on my bladder. I had UFE seven months ago, but it did not shrink the fibroids enough. I think I still have a fibroid pushing on my bladder.

    • vicky36991
      vicky36991 murnaloo

      Posted

      Yes it is possible to have a fibroid pressing on bladder.     I had an ultrasound scan and was told by a hospital urologist that the pressure I was feeling of needing to go to the toilet a lot could be due to the fibroid that had grown in my uterus and my uterus was now large and bulky!   I don't think they were quite sure if it was pressing on the bladder or not.  

      I was told if I wasn't in pain from it then it was best to leave it.   As you probably know the thinking nowadays is once you are in menopause there is a good chance the fibroid will shrink as it's supply of eostrogen stops.   

      I would guess the only way to find out would be to have another ultrasound.

       

    • murnaloo
      murnaloo vicky36991

      Posted

      My largest fibroid has been pushing on my bladder for years and finally got to the point that it caused urinary retention. I had uterine fibroid embollisation in December to shrink the fibroids. They shrunk 70%, but unfortunately, the main one is still pressing on my bladder. The doctor said size is not as important as location in determining symptoms. Also, he said that if left untreated, such a large fibroid could cause permanent damange to my bladder. That was all I needed to hear. I am scheduled for a hysterectomy this Thursday to get the fibroids out once and for all. I hope my bladder appreciates this!
    • vicky36991
      vicky36991 murnaloo

      Posted

      I hope everything goes well on Thursday and then you can be on the road to getting better and a normal life again.  

      xxxx

  • nancy43461
    nancy43461 Jaffatinx

    Posted

    Thank goodness I found this discussion!!  I have many of the same symptoms....I believe they were brought on by having a D & C at the end of May.  I started having these symptoms a few weeks later and have already been on two rounds of antibiotic that doesn't seem to be helping that much! I have never had these particular symptoms before.  I am always feeling pressure in my bladder and go to the bathroom at least 2 to 3 times every hour and only a bit comes out most of the time.  And I feel relief for the next few minutes afterwards but it doesn't last long.  I have had UTI's before and this is different.  Been going on for weeks now and at my ropes end!  I can't hardly function at my job.  I am going to re-Read these and hope that some of these ideas will work for me or something I can mention to my doctor.  I can't imagine having to deal with this for much longer!  This is no life!!

    • murnaloo
      murnaloo nancy43461

      Posted

      Hi Nancy,

      I have had the very same symptoms as you for almost six years. I've had every bladder test imaginable and they always come back as normal. I get up about four or five times a night, so I have not had a good night's sleep in ages. I know where every toilet in town is located. I describe it more as pressure than a burning and it never felt like a UTI. I was on antibiotics for a year and did not see one day of improvement. Overactive bladder meds and amitriptylene help somewhat, but after six years of progressively feeling worse, I learned it was fibroids. I had no idea that our bladders were such tempermental things, but mine seems to be very cranky from being crammed up against a bulky, fibroid-filled uterus. With fibroids, most folks focus on the flooding/flow aspect, but my subserosal fibroids grow on the outside of the uterus and can put pressure on other organs, including bladder and bowel. It's worth a mention to your doctor to rule fibroids out, in my opinion.

    • nancy43461
      nancy43461 murnaloo

      Posted

      Thank you Murnaloo...must can't imagine having this as long as you have!!  How are you feeling now??  I just can't help but think this has something to do with the D and C that he did a couple of weeks before...I am 60 years old and never had to deal with any problems like this....I wish he would have just done a hysterectomy and been done with it...but will certainly mention that to the doctor when I go back.  Thank you again for your response...I don't feel so alone with this!

  • Middlechild79
    Middlechild79 Jaffatinx

    Posted

    Sounds like IC or OAB to me.  I've been dealing with frequency and constant urge to pee for over 3 years now.  Medication only slightly helps.  I don't have pain per se but at my worst, my bladder feels irritated, I have a constant pressure in my bladder and I have to pee about every 20 minutes.  The symptoms of IC and OAB overlap so it can be difficult to know for sure what you are dealing with.  Because I had a normal cystoscopy, the urogynecologist thinks I have an overactive bladder (reason unknown).  I take oxybutynin, Uribel (when needed), pumpkin seed oil and use essential oils.  Pelvic floor physical therapy can also help a lot with decreasing urgency and freuquency.

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