I still have pain when I urinate and pain in my grion area.

[bigpigs77]

I have been to doctors and been to urology department had ct scan had blood test and urine test nothing found had more tests done they don't know what is causing problem. I got message from my doctor saying that urology have put it down to chronic pain and to look up fibromyalgia on arthritis site my doctor said you already know about fibromyalgia and if I need anything we can try and find out if anything alse work for me but they still can't say what is causing the problem.

[Badbessie]

Obviously no one can diagnose online. There is a condition called interstitial cystitis which is not related to infection but is associated with fibromyalgia and other conditions . The exact cause sadly is unknown. If your CT scans and tests are clear then interstitial cystitis could be a possibility. Talk with your GP. Interstitial cystitis as been associated with certain foods and medications. It is also known as painful bladder syndrome.

[bigpigs77 in reply to Badbessie]

I will talk to my doctors about painfull bladder syndrome I have been reading about it but my doctors did not tell me anything about it and urology did not tell me anything about it. I have had stomach problems and bowel problems for years I have not been diagnosed with ibs. Thank you for your help I will let you know if I get any answers. And I have got a chest infection and stomach infection at the moment iam on antibiotics for it if I still feel sick on Tuesday I have to contact the doctors straight away. Bye for now take care

[Blue-52]

Hi, bigpigs77 , sorry, but do you have fibromyalgia??.

I also have problems like you, and have been told it’s fm related, I find certain foods will play it up, it also cramps which is painful, also washing, I use emollients nothing perfumed, there is a medication that the doctor can give you, to slow down the amount of pee’s you have, also a relaxant medication, such as Amitriptyline and there are others, it’s really trial and error to find out your triggers, also fizzy drinks may cause problems.

I hope I have helped a bit. Take care

[bigpigs77 in reply to Blue-52]

Yes I have fibromyalgia I take 50mg amitriptyline every night and have tablets to help me with my urine flow. Thanks for your reply bye take care

[Ladame in reply to bigpigs77]

Hi, I was put on a very low dose of amitriptyline, 10mg, and started to have bladder problems. Up and down all night, every hour feeling I needed to go then couldn't go straight away etc so I asked if it was because of the amitriptyline and told it could be so came off it and problem resolved itself. Still up three, four times a night but without the discomfort. May be worth looking into this? Hope you find something to help as it does get you down, I understand as fibromyalgia robs you of so much and this really frustrates me. I've had to accept that I can no longer be here, there and everywhere and do everything so I'm using my energy for what matters most to me. Have you had talking therapy? It's helped me enormously. Stay strong, your family love you. 🤗

[Hidden]

hi I have fibromyalgia and complex regional pain syndrome, I have the same problems I have been told it's the nerves that supply these areas that cause so much pain.

i bought some urinalysis sticks on line they are easy to read to keep a check on level and make sure there's no UTI ...hope this helps

[Cat00]

I had a cystoscopy on Friday to try and determine whether my condition is Bladder Pain Syndrome or "just" overactive bladder. I've had an overactive bladder all my life but developed BPS about 4 years ago. It is comorbid with fibromyalgia.The GP's did virtually nothing to help me, in part bc I've already been on Amitriptyline for years. I was getting up to wee every 45 minutes at night. I had to go nuts at them before they gave me a referral.

There are A LOT of treatments for Interstitial Cystitis/bladder pain syndrome it's just that they often only help for a bit or are not very effective. Personally I needed all the help I could get. I assumed my condition was entirely neurological, bc I've had chronic migraines, fibro and IBS for 30 years. I was surprised they did actually find that my bladder wall was bleeding.

I found an American forum had a huge amount of information on the subject which has proved very useful when talking to urologists bc for some reason the healthunlocked forum no one seemed to write anything. Its called Inspire and they have specific Forum for IC/BPS.

[bigpigs77 in reply to Cat00]

I had a cystoscopy and did not find anything I will ask my doctor about painfull bladder syndrome I have read about it but my doctors and urology did not even mention this.l did have small traces of blood and high protein in my urine test at doctors but did not know why had small amounts of blood in my urine. I will have to phone the doctors and get them to contact urology and try to get them to give me a proper answer to my problem's. And I have got a chest infection at the moment and a stomach infection taken antibiotics at the moment. Bye for now take care

[Cat00 in reply to bigpigs77]

It does seem a bit lame that you have a bladder problem but are being diagnosed with fibromyalgia, they are comorbid but obviously fundamentally different conditions?My take is people have recurrent UTI's that eventually cause pain when there is no infection detectable are told they have Interstitial Cystitis whereas people who just have lots of pain that may have evolved from overactive bladder or IBS are told they have Bladder Pain Syndrome.

[bigpigs77 in reply to Cat00]

I was diagnosed with fibromyalgia years ago. I had a cystoscopy and ct scan had blood test and urine test a year ago nothing found. I had more blood and urine tests nothing found that was about two weeks ago. So my doctor told me that they put it down to chronic pain and to look up fibromyalgia on arthritis site. I did get to see my own doctor asked about it but was another doctor who had emailed me about the results and I was seeing her for a chest infection and stomach infection got antibiotics for infection she said she was more worried about this at the moment I would have to see her again if I did not get any better by the end of the week. I will ask my doctor about what they said because it did not make sense I have saved the message I don't know I just won't to find out what is causing the problem because this the is just not hurting when I urinate my private bits are hurting the pain is getting worse I have had a noth I think about killing my self but this would be the easy way out but I love my family to much to do this to them I will grin and bear it and get back in the fight to find a way to get diagnoses to my problem. Thank you for your interest.

[Cat00 in reply to bigpigs77]

You sound so similar too me, I've had bladder pain all my life but got much worse 3/4 years ago. It's the first time since my children have been alive I had suicidal thoughts, I couldn't do it to them but the thought of living another 40 years with this little sleep is so frightening.I cant imagine having a stomach infection and chest infection at the same time, you must feel dreadful. I really hope something starts to work for you soon and that you find some answers.

[Tinkertoy_5]

Hi my first post on here .so be gentle lol I have a condition called lipomatosis Dolorasa.which causes me a lot of pain ..any way I was put on the old tramadol along with gabapentin..I started to have same symptoms has you..

I couldn't get answers off doctors .i had it for over two years..but when I visited my pain clinic they taken me off gabapentin and tramadol. .put me on morphine and pregablin.

Within weeks .

My symptoms started to dissappear. I can honestly say it has now gone .

I don't know what meds your on my friend .it could be gabapentin..but I do know it must of been that that was causing mine .

Hope this helps .regs tony