Unknown chronic pain help!!!

Hi does anyone else suffer from unknown pelvic chronic pain. I am 30 years old (omg just turned it on sat first time actually said out loud lol) and for the past five years I have been ill with pain in my pelvis. Things have got so bad that in March I had to give up my employment. The pain is constant usually starts on right lower abdomen and into pelvis then as day progresses I have it on both sides. I have been checked for endometriosis, chrons, IBD, kidney failure but so far no answers. My GP is now saying no more tests even tho bloods are showing mild inflammation, folic acid deficiency and my body is so sore and was just in a and e on 3rd jan. She is now saying it could IBS but no treatment for this helps or it could be neuro pain. Confusing as on so much pain yet they won't help apart from medicate me

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  • Hello Gem85! I had all that, and for me Chiropractic Manipulation worked :) Good luck :)

  • What's that x

  • Hi Gems85, I have chronic IBS ,and my pain varies as to how I'm sitting,if I'm sitting with my legs up I have pelvic pain. You say your Folic acid deficient, have you had a thyroid test. Also have you had a test where they put a small camera in your virgina to look at your ovaries. Give that some thought. When it comes to IBS we don't all follow the same symptoms so don't worry to much. If your not happy about your care ask to see a Gastrologist who will do all the tests. Good Luck.

  • They have me under gynaecologist had a laparoscopy so that would check ovaries I think. I have had a 4cm cyst before too. Don't know if they have tested my thyroid both my mum and sister have problems with there's. The gp says no more tests so a bit worried to ask for anything else sounds silly but I already think they think I am mad xx

  • Don't worry about what they think! They probably don't think anything at all! Is the gp female? If not switch and write a list of things you're worried about. Take someone with you if you can coz stress of the visit makes it hard to concentrate on what's being said. Don't take no for an answer. Finally, be satisfied with the visit or change doctor. Find someone you can relate to. It is their job after all to care for you and about you. Best wishes.

  • Hi yeah my gp is female and she is trying to be understanding but at same time makes me worried as no cause to be found yet xx

  • Try not to worry coz they usually pick up serious things quick enough but do go back and press the issue... Best wishes

  • I have that everyday, and all I take is 500mg paracetamol....which don't help. Just have to live with the pain

  • I take 3x300 mg gabapentin, 8x500mg paracetamol, 3x50mg diclofenic and 8x50mg tramadol I awaiting to get put on fentanyl patches xx

  • Have you been tested to see if you are a coeliac? Some sufferers don't exhibit symptoms ie abdo/pelvic pain into adulthood where weight loss or diarrhoea aren't major indicators. Folic acid and/or iron deficiency anaemia can in some cases be the only presenting symptom. Coeliac disease in adults often gets overlooked. It maybe you don't have it and it's a case of severe IBS but there are treatments gps can prescribe or if they fail send you to a gastroenterologist for their opinion/treatment. Is it possible to see another GP in the practice or move to another practice? Hth

  • Yeah I have been tested three times in the past 2 years but is coming back negative. I meant to add that if I do have a period I end up bleeding badly and get very ill and end up in hospital they have tried decapeptyl to stop my periods and using the mini pill now to keep them away xx

  • Hi I too suffer with Chronic Pelvic pain, and I had to give up work too due to the pain, I am now on morphine for the pain, so I know how you are feeling.

    You then start to think I must be imagining it as they can't find anything that's causing it. I have also been labelled from some doctors as one of those people who just love going to hospital for the sake of it but has nothing wrong with them.

    Keep persisting by going to your gp with the pain so they know that your not giving in. If you are still in pain and the pain killers aren't helping you need something stronger.

    I wish you well.

    Xxx

  • I wish you well it's very hard and upsetting when u feel so alone know that I am here for you.

    Back to GP on Monday seeing a different female to see if that makes any difference xxxxx

  • Have you been tested for pelvic inflammatory disease .I would have thought this would be one of the first things to check .I had this and it sounds just like your description

    fiona

  • I am not sure if they have have or not how would I know or what do they do? Xxx

  • I am not sure if they have have or not how would I know or what do they do? Xxx

  • I had similar pain to yours, and underwent a huge amount of test for everything Gynecological.Then bowels,bladder kidneys and so on, my problem, no disc in L5-S1. causing bone on bone rubbing which caused awful pelvic pain which started like yours with no other pack pain, turns out, never developed a proper disc while developing in the womb, had a tiny fragment which eventually wore away, I hope you find the cause of your debilitating pain, you are very young to be so disadvantaged by it.

  • Hi

    I have had an MRI on my lower 4inches of back as my dad had the same as u and has had to have surgery twice so I asked them to rule this out but it came back clear.

    Thanks x

  • Hi Gemz85

    I suffer with chronic pain in my in my pelvic bone which radiates in to my hip bones I had an x ray and it is caused by arthritis and it gets worse in cold weather or swimming in cold water, if your doctor won`t send you for an x ray go to one who will, you are not too young to have arthritis. Good Luck.

  • Ok I will ask the gp on Monday if there was anyway to check for me. I doth know why my pelvis has not been xrayed as I was hospitalised from 13 weeks of pregnancy with my five year old due to SPD. Since then my pelvis has never been right xx

  • With what you've said about the SPD I'd consultant a women's health physio as it may be related to that but not picked up before especially as the pain occurred after your pregnancy x

  • I forgot to add that prostap didn't stop my periods or help the pain at all but the zoladex did stop my periods and the pain after three months, I do have to have my injection done every three weeks though or the pain and heavy bleeding, flooding etc return within weeks. For me zoladex has been a miracle, but I'm very well looked after and have to have a yearly DEXA scan to check my bones, I've felt very well on it after feeling like death every single day. I just need to sort out my bladder condition which has been refractory to all treatments to date, nerve pain and other health issues *sigh*

    Hopefully they will be able to find a treatment that works for you soon

  • Yeah I had decapeptyl for a year and a half then it stopped working and then things just got worse from there. I have always told them about my spd as I was in hospital the whole of my pregnancy nearly. My pain is in my pelvis down my hips and across both my lower back and lower tummy. I am so confused to what is causing it hurts so bad

  • Even though your gynae knows it maybe worth considering seeing a physio as I saw a women's health physio for internal trigger points that made examinations and sex painful. Luckily my gynae is an endo specialist but also is a specialist in pelvic pain so considered these in addition to my other diagnosis so I was very grateful to her for this. Not all gynaes consider/know much about them

  • Even though your gynae knows it maybe worth considering seeing a physio as I saw a women's health physio for internal trigger points that made examinations and sex painful. Luckily my gynae is an endo specialist but also is a specialist in pelvic pain so considered these in addition to my other diagnosis so I was very grateful to her for this. Not all gynaes consider/know much about them

  • My Gynae is head of endometrosis for Scotland and specialises in pelvic pain. His wife is my specialist nurse for chronic pelvic pain. I have been told about trigger points for acupuncture but that's all. Yeah I saw another gynae before but he was no where near as good as my gynae. I will ask about internal ones too tho thanks so much I appreciate all the help I can get xxx

  • Pain can be due to muscle micro-cramps. This is an area that is not looked at by consulants who know how to diagnose painful conditions but have very little idea how muscle behaviour can contribute to pain.

    It is worth having a look at the Alexander Technique, McTimony chiropractic and a good local massage therapist. You will have to network with people in your local area to find out who have the best hands on technique in your local area.

    Good hand technique can relax muscles in ways that no medication can. If you have got pain caused by over contracted muscles then the therapist mentioned above should be able to reduce your pain.

    Hope this helps

  • Hi look up congestive pelvic syndrome (I think that's what it's called). The symptoms you have sound the same as mine. I am seeing gynae in Feb and going to ask about this. It can only be diagnosed by a specific test, not from a scan so often missed or not looked for. It is similar to varicose veins and can be treated. Hope this helps, let me know.

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