Three year unexplained agony

Hey there everyone

I have posted about this before but the changes this past month have been alarming and they are frightening, I haven't had much professional support and I am at my wits end 😔

I have had constant unrelenting pain in the area just slightly lower of the appendix for three years

The pain is sharp and a stabbing pain when i move

Many doctors have examined my stomach but when they do i feel no pain because they do not press deep or hard enough you have to press down very firmly and deep around my lower right area sort of appendix/above my pubic bone area for the pain to suddenly be felt severely

Three years ago when the pain first started i was sent for a laporoscopy to check for endometriosis and this was clear

I was then sent for colonoscopy which found proctitis but they said it was not that causing my pain

I was then sent for a trans vaginal ultra sound which was clear and i was told sometimes people get unexplained pain and given pain killers and told to basically live with it

So three years of living and dealing with this uncomfortable and often severe constant pain this past month the pain has intensified is wrapping around the my lower right back and travelling down into my groin and thigh it was so bad i went to the emergancy room in agony and tears to which they gave me another trans vaginal ultra sound which was clear and again said unexplained pain and sent me home

A few days ago i noticed the pain was now at its worst when i had a full bladder or took a very deep breath

I went to my doctor who dipped my urine said it was clear but to do another sample and put it in for the labs to test

Today however my urine has been bright red which startled me very much, there is no blood on the toilet paper

I am at my wits end, could this be a bladder problem?

9 Replies

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  • I'm not an expert at all but it sounds like a nerve problem to me. It's important to go back to your doctor and check your urine, but ask about nerve pain. This may sound obvious, but have you eaten beetroot or any other red food that could discolour your urine? If not then definitely see your GP as soon as you can. Let us know how you get on. Take care.

  • I would definitely go back to your doctor since you have blood in your urine. It could be a host of issues. The pain part of it could be PND or it could be CPP. Most doctors consider chronic pelvic pain I have to be a trash can diagnosis and don't take it seriously. It is horrible the way doctors treat us with this condition. It is extremely difficult to treat and causes the person with it low to enormous amounts of pain that most pain pills don't even touch. I work and can't even sit down for too long or I'm in pain. There are so many people and professionals that will call you crazy and a pain pill seeker for it too.i had a psychiatrist, one of the supposed best in my city, tell me it was all in my head. My wife left me because of it and I lost my son. Friends and family rarely ever check in on me to see how I'm doing or if I need anything. I fight this horrible condition alone because that is what a lot of us chronic pain sufferers face. Stress adds to intensifying this condition, but how do you reduce stress when everyone and everything has left you. I might end up losing my job too and risk being homeless. We are treated like #! $@ by everyone around us who doesn't take the time to research our daily struggles. Normal productive happy people turn into being unhappy slaves to their pain. Sorry I seem overly cynical but I've had this for 2 years now and have lost everything because of it, and I have seen and felt the way society treats us, professional or the public. They think we are lazy pain pill seekers. My parents used to call me every other day, but now they rarely call since the pain has returned again. I went 4 months without pain and thought it had healed. Chronic pain is evil like that, so it can go away for years and then creep right back up again with no warning. I do wish you the best in your fight if this turns out to be what I have or PND.

  • You have every right to be frightened. It is a scary condition to have because of how we, as sufferers are treated and suffer with this debilitating pain. I don't even feel like a man anymore and most of the time contemplate attempting suicide again. I've lost everyone I've cared about because of this condition. I'm seeking counseling but I don't know how much good that does me when I was up to the same pain I went to bed with that previous night. I still wake up having to face this alone again everyday. I have to go to work and suffer for 8 hours every day and try not to show my bosses I'm going to be a problem so I don't lose my job. In addition, another thing we have to face in the great US of A is the fact that our medical system doesn't like to recognize chronic pain as a condition worthy of disability most of the time. I would like to lie and say it gets better, but in our current world and with the nature of chronic pain, it seems to only get worse. Thank you $@d*/ health care and a whole bunch of rich fat cat insurance companies that could care a less about our welfare!

  • Hi, just a quick thought, finalheaven26, it could possibly be kidney stones? Or an underlying chronic kidney infection? I've had both and these symptoms sound similar although my guess would be that they shouldn't go on for this length of time. Perhaps ask for a referral for ultrasound on your kidneys and get checked over by a renal specialist. Kidney stones are excruciating, absolute agony but usually acute but still it could be something worth checking. Also could pos be grumbling appendix? Ive also had appendicitis! Please get checked by different doctors as left unchecked these issues can be awful. Keep searching till you find a dr who seems like they will actually look into all possibilities. (Hard I know!) let us know how you get on. Take care.

  • Finalheaven26 & Manwpelvicpain. You both know that this isn't in your head, be strong and fight on to get someone to listen to you & find the cause of your pain. You shouldn't have to suffer, its inhuman! Mine was endometriosis and it took years to be diagnosed but I had the same reception. Dr's telling me there wasn't anything wrong, Drs telling me it's all in my head etc. Know yourself, don't doubt yourself and make them help you. Heart breaking to read your struggles, hopefully the saying that the darkest hour comes before the light is true, wish you both wellxxx

  • Thank you! I am trying my best to keep my head in the game and keep pushing forward. Do you still suffer any pain relapses or are you pain free now? Did you have surgery to remove it? I've heard so many stories on here about surgeries to remove it going sideways.

  • Hey everyone thank you all very much for your responses and kind words 

    I don't have my appendix and I haven't eaten beetroot at all 

    I'm a nurse myself but I'm that scared I guess I'm looking for comforting and advising words 

    I don't think it's kidney stones, not after three years. 

    I went back to my GP who merely said its not an infection which i knew it wasn't I have a feeling it's a bigger problem than that so I asked to be referred for a cystoscopy but unfortunately I don't think she listened due to her noticing certain medication i'm on (she wasn't my usual GP) and then stared a very heated debate with me as to why I shouldn't be on it causing me to walk out 

    Usual GP visit not till the 5th of April 

    I must admit I'm actually terrified 

  • Hi have you looked into the possibility of ic? 

  • how you getting on now?

    i've only just seen your post.

    i've had symptoms similar to you for 4.5 years and it occurred to me that the blood in your urine could be the clue to your stress.

    i'm thinking on the lines of bladder stone.

    lets know your diagnosis as this surely gives all these clever doctors a clue to whats going on with you.

    hope you've had joy.!

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