3years and counting

Hi my name is Von. I'm 25yrs old and have been suffering from abdominal pain since a child however 3 yrs ago it turned chronic. Still no diagnosis but suspected nerve damage in lower right side of abdomen or hip issue. I had to leave uni where I was on my last teaching placement to become a teacher and eventually lost my job. Finally when I felt that I had lost everything I tried to commit suicide in 2016 and finally got the help I needed with pain psychology and physiotherapy. I still have very dark days where I can't cope with the pain, my lack of life and my lack of independence to do things for myself. Hopefully in the future I will be able to cope with my pain and regain somewhat of a normal life even if it isn't like my life before.

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  • Hello Von

    My name is Mary, I am 63 years old.

    You have not had a diagnosis for this abdominal pain yet?

    What investigations have you had?

    Do you have normal bowel function?

  • I have been diagnosed with IBS in the past but doctors say this isn't causing the pain. I had a colonoscopy and all seemed fine but they were unable to take a biopsy so I'm awaiting another but the doctors are sceptical it could be bowel related. I was diagnosed with allergies to milk, wheat and gluten allergies aged 13. Had CT scans as well as ultrasounds. Found ovarian cyst and at 18 years had a laparoscopy but GYN said all appeared fine and said pain wasn't related. Pain management finally settled on nerve pain and prescribed tramadol, pregabilin and duluxitine. However last week ortho/trauma decided to send me for a MRI as the suspect a hip problem but doubt this would be the route of the pain. So again I am left wondering what causes the pain for sure. They say it's unlikely they will ever find the cause and I will just have to find a way to cope with the pain through the pain physiotherapy and psychology team. However it is so hard and I'm missing out on life stuck in the house most day because of the pain unable to live by myself.

  • Have you ever had a Barium Enema xray?

    It is my opinion that IBS does cause pain.

  • Yeah I had this when I was about 14 but they said everything was normal

  • They surely must keep searching for the cause of the pain ???

  • They seem to think it is better to find a way to manage the pain. The pain management dr said they can't always find the answer and I just have to learn to accept this. However it is frustrating because the pain is so intense and constant that I feel there has to be something to find. It can't be good to be on this medicine for the rest of my life as I'm only 25

  • What medicines are you on?

  • Do your bowels work well and regularly now?

  • No I keep having problems with the tramadol

  • Do you know that constipation -which is a side effect of many pain medicines -can cause all sorts of abdominal and other pain? It can cause trapped gas also and cause agony and immobility.

    If your bowels aren't working properly because of the pain medicine then that must be urgently addressed. It can exacerbate your pain tremendously.

    The way to treat it is to drink lots of water. Avoid caffeine. Drink decaf tea and coffee. Take Lactulose medicine and Fybogel sachets every day. When your bowels start working properly you could stop or cut down on the Lactulose. But stay on the Fybogels every night. You can add a little fresh orange juice, this stops it from going thick before you can drink it. Believe me I had a life of pain because of my bowels not working . I now have my life back. Gradually build up to a high fibre healthy diet. Try to do Pelvic floor exercises. Do lots of them if you can 4 or 5 times a day.

    You are too young to suffer like this. You must get your life back.

    Keep me informed. You can pm me or post anytime with update or any questions or if feeling low.

    X

    🐥

    ps

    I just read your post again - you did say what pain medicines you are on ! Sorry!

    X

  • IBS CERTAINLY DOES CAUSE PAIN i HAVE IT AND I GET PAIN FROM THE SPASMS

  • If it is suspected 'nerve damage' and neurological pain then you should be given urgent referal to a Consultant Neurologist

  • I will take with the pain management team about this and see. Thanks for all your help x

  • It always makes me sad to hear of someone as young as you having to deal with chronic pain. I've been dealing with chronic pain for 13 years but I feel thats different because I didn't start my pain until I was in my forties. I don't have any suggestions for you other than to say keep going because I have known a lot of people who have gone for years not knowing what's wrong with them and a few years later they find out and get it fixed. So have patience, get therapy if you're not already and take care of yourself.

  • Hi von

    I wonder have you injured your back possibly when you were young? My sister has a trapped nerve in her back, causing referred right side pain. My sister was vomiting and was in intense pain, she was hospitalised a few times & even had her appendix out and in the end our Rhumatologist diagnosed referred right sided pain, she had to wear a special corset for a few months and found that only Oramorph kills the pain when it is really bad, though she takes Tramadol to help keep the pain under control.

    I don't know if any of what I have said is anything like what you are going through, if not I'm sorry for prattling on and I hope that you get it all sorted soon and be able to get on with your life,good luck.

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