At a loss :-(

Can endo really be causing me so much pain???

I am currently experiencing upper right quadrant pain, under my ribs, in my back, neck and shoulders. I have had chest X-ray and scans which are all clear, it's been nearly 6 months now with no release!!

I've had endo since I was 13 now 36. I saw the gynae last week and said I thought I had diaphragmatic endo but he pretty much laughed me off! He put me on the combined pull back to back which hasn't done anything! I'm truly at a loss and in so much pain!! I don't know what to do :-(

22 Replies

  • Hi Shelly,

    Hope you don't mind me replying. My partner who is experiencing the same as you also said to her gynaecologist what about diaphragmatic/lung endo and he too told her, it's too rare! To which she replied well someone has to have it, it's not like I'm the first person.

    She's now been discharged from gynae and is with thoracic consultants. She too has just had a CT scan and everything came back clear.

    All of her symptoms and pain point to that but still no answers. Just to say you aren't alone. I too have endo but in the womb/ovary area.

    Hope you get some answers asap lovely xxxx

  • Sorry she had the combined pill which did nothing xx

  • That's what he said to me, it's too rare, but I was like yeah but people do have it!!

    Sorry that you have the pain too :-(

    What symptoms does your partner have?

    Thank you for replying x

  • Endo is something I wouldn't wish on anyone!

    She has like a popping sound in her side. The pain is constant but around 12-14 days before her period. During her period it's horrendous. After her period has finished it kinda calms down, then the cycle starts again. She's been complaining of pains in her legs too. She always says she feels like she's been winded?! Does any of this sound familiar? Xx

  • It's just awful isn't it!! The worst of it is people think you are making it up or exaggerating the pain :-(

  • Has your gp given you any pain meds? I find heat helps .

  • No pain mess, what do you take?

    Thank you for replying

  • Hi - I replied to your previous post and it was discovered that you had endo affecting your bowel that should only be dealt with in a specialist endo centre as should diaphragmatic endo. It is unlikely that a general gynae even looked at your diaphragm at your lap. Did you ask for a referral to a centre as you can choose who you see in England. I have now started a Facebook group for UK women and one of the admins had diaphragmatic endo. Perhaps you would like to join:

  • Thank you,

    He dismissed me fully and said that he was pretty sure I didn't have it. I explained my situation he really wasn't listening. He said because my X-rays and scans came back ok I would not have it.

    I'm totally confused as I didn't think you could see on a scan?

    He didn't give me an option to be referred on?

  • Where in the UK are you?

  • Swindon

  • I too was going through the same pains and couldnt get any doctors to take me seriously but through food elimination i have decreased alot of my pain. Aswell as the obvious like wheat, gluten and dairy try taking yeast out of your diet. Since stopping it completely i have stopped getting the pain in my liver area. I hope this helps as i feel your pain x

  • Wow really, how long u til you noticed results? X

  • Within a couple of weeks. I was amazed that something so simple could cause so much pain. Let me know how you get on x

  • I will, thank you! Is it hard to do? X

  • At first i thought it was going to be but you soon get into a routine of no bread. I managed to find a mixture from the online company Barkat that does a yeast free bread mix which is ok (not brilliant as bread goes but still ok) but ive got used to having Warburton wraps, salads, and soups more so now i hardly even think about it.

    Just be vigilant with certain cakes and lager and things as you could be consuming it without realising

    Im also taking some supplement pills from an online company (sorry dont know what they are called or where from as my sister ordered them for me, but i can find out if you want) that are supposed to clean yeast out of your system and again i think have really helped. x

  • That's really interesting, I had never thought of yeast as being something you could be intolerant to.

    Did you have similar symptoms to me? X

  • Yes all the same. I was convinced i had endo on my liver but at my last lap in January they checked and said it was all clear. Ive been under 2 gastro drs aswell and they were both useless. No one wants to look at the bigger picture and give you ideas as to what to try. Its all been through food charts and eliminating nearly everything to get where i am today which still isnt brilliant but definately better than i was a few months ago.

    Im waiting to have both ovaries out in the next few months but am scared what new symptoms that will bring as im sure lack of progesterone and too much oestrogen first started me with so many stomach problems including horrendous acid reflux that resulted in oesophagitus and gastritis which has now healed.

    Endo is the worst illness ever which brings so many other issues.

    Keep intouch and let me know if any of this helps xx

  • Its such an awful illness, I'm just so fed up all the time.

    Will try cutting those out and hope it helps.

    Thank you for taking to

    E to chat x

  • Hi there, how are you getting on cutting out yeast. Have you noticed any difference yet x

  • Hello, may I ask you which hospital you are being seen, I also live in Swindon, waiting for lap in Oxford , upper back and shoulder pain is really bad, had chest CT done , all clear .

  • Hi, the great western. Hopefully you will have more luck in Oxford. What does your pain feel like and where do you get it? X

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