Lack of diagnosis

Hi, I was wondering if there's anyone else on here that doesn't have a diagnosis for their chronic pain? I've had severe chronic abdominal pain for 6 1/2 years and all the investigatory tests so far have come back negative. The consultant says a cause is only found 45% of the time in women my age with this type of pain. I just really hate not knowing what's wrong and some doctors treat me differently because there's no answer for why I'm in pain.

18 Replies

  • Is the pain 24/7 present?

  • Yes, pretty much, I get a day once in a blue moon where I'm not in pain. It varies a lot too, sometimes it doesn't interfere with my daily life too much but sometimes I'm in so much pain I can't walk. It's like that now. The pain is in my lower right abdomen, it comes across a lot like appendicitis but obviously isn't. They've ruled out gynae problems and I'm confident it's not IBS. I've been referred for a colonoscopy which is something I've never had before and I'm a bit scared. I've also been referred to pain management which is good, but still, I hate not knowing. It's so frustrating, I'm 22 and I feel like I'm missing out on so much.

  • Welcome aboard Xzina_x

    Your consultant is quite right although obviously I don't know youe details.

    Pain clinic will tell you similar - no matter what or where the symptoms are - very few people get a diagnosis.

    Everyone wants to know what and why. Human nature and in a way it gives you something to ficus blame, anger,, sadness and a whole host of emotions. This is all part of having chronic pain. It is likened to a bereavement where you have lost something you once had never to return..

    It is easy to say forget it, move on and fin a way to manage it. That is where the pain clinics come to their own..

    In my own case I lost my sight very suddenly overnigh. That was over 30 years ago where diagnosis was limited. About 7 years agi with modern technology phots were taken of the inside of my eyes showing the deadness. There was the proof of you like. Something to show those who doubted my blindness.. Releif overwhelmed me.. I could never see the pics and never showed anyone but thy were there.

    Chronic pain is the same. Hardly ever shows to the world yet you often go through hell.

    Oh gosh I am on my ramblings!

    Hopefully acceptance of how, with help, your life has changed will be awaiting you.


  • My GP is actually very supportive and lovely. He's told me not to give up hope yet, that we're not at the end of the road and even if a diagnosis isn't found I may regain a normal life with nerve blocks. Yes, I do think proving to the world that I'm not faking is part of it. Not everyone takes my pain seriously and I find that really difficult. Some people push me so far out of my comfort zone that it impacts my health and puts me in a few days of increased pain. They think I'm exaggerating. Your journey sounds like a very difficult one, I'm very impressed with your level of acceptance. I think I will get there if I overturn every stone and still find nothing. You're right, it's like a bereavement. After 6 1/2 years you'd have thought I'd have gotten over it by now.

  • Never give up hope.

    Medical procedures from 30 years ago would scare the pants off most Doctors nowadays! Conditions undiagnosed are now being recognized.

    There is much which can help you and you sound positive. A good GP is worth hanging n to. If your friends doubt you - google spoons and up comes a good definition.

    Do stay around on the forum. Wealth of experience here and you can ask, rant, cry whatever you feel. No one judges you and you will find planty of support should you need it.


  • It seems great, I just found it :) I love the spoons analogy and have been using it frequently. It's not that they don't understand, it's that they think I'm exaggerating/being lazy and I can do a bit more really.

  • Have you had a poke around the other forums? Some might have better advice. Some a bit gushy and frilly. None as good as pain concern which is where most people start.

    Some MPs did a silly exercise a while ago. Sat in wheelchair and went onto streets. At the cash point one couldn' reach so stood up. They also tried special specs which gave them assorted sight loss. They all said how hard it was. No. The hard bit is being like that day after day. Weeks, months, years, for ever.

    Sadly you can't give your pain to your friends. Not that you would want too.


  • Don't even get me started on benefits and politicians. I'm in my wheelchair at the moment and it wasn't until I was in a wheelchair the first time that I realised how impossible it is to do anything in a wheelchair. I'd maybe like to give it to them so that they're nicer to me. It's actually mainly family, if it were friends I'd have walked away by now.

  • Disabilities and benefits. Someone after my own heart Spent the last 6 years campaigninh agsinst Tiry welfare.

    My parents were the same with my sight loss. It was hereditary from generations back but they never wanted to talk about it.. Mum said I was partially blind! Dad would wave letters and photos under my nose saying I really could see if I looked closer..

    I think it was a certain anount of fear of what to do or say. Partly cos of the generation they came from - ignore it it isn't really there. And maybe showed there was a weak in the genes - that was Dad. Or maybe they never thought of me as having anything wrone cos of the way I was.


  • I just wanted to say that I am young as you are, I'm 22 and I have chronic prostatitis/chronic pelvic pain syndrome. I know what are you going trough. Pain clinic is something you should really consider and nerve blocks or radiofrequency ablation can be a really helpful treatments. I'm considering to do this myself, and maybe even a prostate surgery, bit this is relater just for my condition. If you ever want to talk with somebody, I'm here for you, message me anytime and don't give up! 😊

  • Hi Xzina, so sorry to hear of your pain . I had terrible stomach pain on and off for years and it wasn't until I actually had hysterectomy surgery three years ago when on the operating table my consultant was alarmed by the amount of severe endometriosis he found in my lower abdomen that hadn't been detected over years of various tests,scans etc. I hope you find an answer and get relief from the unending pain.

  • I know what your going through all my test come back normal and the Doctors say there is nothing they can do to help me.So I have to suffer with the pain....

  • What about pain clinic?

  • Read "Born to Walk: Myofascial Efficiency and the Body in Movement" by James Earls. It will not give a cause for your pain. However, it will give you a different understanding when you do the investigation you need to do in order to look for ways to reduce the discomfort you are in.

    Not sure how helpful I am being.

  • OH can so sympathise,i could have written your post! had camera up& down,scans ,nervepain block,acupuncture,physio,rectocele op & no diagnosis! in excruiating pain 10hrs a day,pain bearable after you havent had a colonoscopy Gastro said i dont need one as ive had a sigmoidoscopy.sorry cant offer you any advise ,but hope you find some relief a s a p!.

  • Have you considered gynecologist

  • I've seen a consultant gynaecologist and they think there are no issues there.

  • hi...did you ever get a diagnosis??? i hoipe you're doing well.

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