Unbearable pain and no diagnosis

Hi my daughter started getting a pain in her lower right side at first they thought it might be her appendix so she was admitted to hospital but all her tests and blood work came back as normal they did find fluid in her abdom and thought she had had a ruptured syst but not confirmed 3 weeks on and several visits to the hospital she is still in so much pain !! About 3 years ago she had similar pain and all the blood work was normal then too when they finlay decided to look she had had adhesions on her colon so we are thinking she has more adhesions but gyne has said there is nothing wrong no one is doing anything and in the mean time my daughter is in pain they say if she had endo it would show up on her blood work please help

15 Replies

  • If only endo showed up in our blood, how easy would diagnoses be, she would need a laparoscopy to check for endo, ask gp for a refferal to a bsge centre good luck xx

  • Thank you for your reply that's good to know it does not show up in your blood what is bsge

  • Never showed in any blood works I had , only way to 100% diagnose is a lap , when I first started periods when I was younger I had same issues went un treated until I was 23 and had ,had my daughter , doctors convinced my mum I was attention seeking X

  • Thank you for your reply she has been in constant pain for 3 weeks now and is meant to start a new job a week on Monday I am at my wits end

  • They never move quickly to help or diagnose , if possible find someone who knows about endo , my doctor didn't no much about it so it never crossed his mind that it could be that ,maybe try and get her into a female doctor print off information about endo and highlight the symptoms and demand a referral to see a gyno X

  • Thank you we live quite rural so not a choice of doctors unfortunately but she saw the gyno in hospital and they say she is ok but you can't be in this much pain for nothing

  • Hi - endo wouldn't show in blood tests but there usually will be a pattern. It would usually start with problems with periods but you haven't mentioned this - heavy often with clots and very painful with cramping. These symptoms would normally interfere with life in a way that usually means days off school at period time and gradually worsen. There do seem to be some who don't have period problems but I think it would be the exception. Back ache is also a common symptom. Does she have any abnormal history regarding periods. If she were to have endo on the bowel she would usually expect IBS type symptoms at period time alongside pelvic pain. I am assuming she is young and is not sexually active to know if that would hurt - how old is she? Adhesions don't come from no where though and assuming she hadn't had any abdominal surgeries or sexual encounters to catch an STI that could cause adhesions from pelvic inflammatory disease then she has had some inflammation for some reason that has caused them.

    It's not quite clear what investigations she had had. When you say they found adhesions 3 years ago did they operate at that time and just report adhesions on the bowel and close her up? Adhesions can cause excruciating pain and can cause the bowel to twist on itself and get glued to other organs or the pelvic wall. Once at this sort of stage pain can be permanent with severe shooting and stabbing pains as they pull. Regardless of whether or not she has endo they can't just be left.

    The best thing you can do is get her to a specialist endo centre for a lap to do thorough investigations that are not done in general gynaecology. She should probably have an MRI to see what exactly is going on with her bowel which they would arrange. Where are you in the UK?

  • Thank you for your reply my daughter is 24 she has always had heavy periods with bad cramping and has always had problems with back pain she has a 4 year old son she had a laprascope where the found free blood and adhesions on her bowel and they separated them at the time and has had no issues since then . They did an internal scan with a wand and found fluid they also did a ct scan with dye that confirmed the fluid and was sent home with pain relief after several more visits to a&e they did and ultrasound that confirmed the fluid had gone sent home with more pain relief she is in excruciating pain that won't let up all her blood work is normal

  • We are in Scotland about 50 miles from Glasgow

  • You sound like an awesome mum. The only way to diagnose endo is by laparoscopy. Keep pushing for the help you need and don't give up - your daughter needs effective pain relief and a gynae who will listen to her and take her pain seriously. It sounds to me like there is enough to indicate that a laparoscopy would be the next step. She might have lesions that were missed the first time and an ultrasound/wand scan probably won't show them unless they are absolutely huge. If you and she feel that a laparoscopy is what she needs, then don't give up until you get it. I'm sure that Glasgow or Edinburgh will have a center of excellence for endometriosis. Good luck x

  • Here's one in Edinburgh, your GP can refer you:


  • Thank you xx

  • Thank you I do feel helpless though she can't function at the moment or look after her son she never ate yesterday and when she tried she was sick she has lost over a stone in weight

  • I'm so sorry :( I will be thinking of her - please let us know how you get on xx

  • There is a centre in Edinburgh and one in Aberdeen but a GP is very unlikely to refer you unless you are paying privately.

    In England we have NHS Choices and can choose to go where we want provided we are asking to see a consultant relevant to the condition under consideration, either confirmed or suspected. The BSGE centres accept all stages of endo that might normally be dealt with inappropriately or incompletely in general gynaecology, but are especially important for severe disease as the surgeons have to have undertaken at least 2 years' advanced excision training to carry out the complex surgery involved. In practice we would want a centre where the surgeons have many years experience under their belt. A case of 'suspected' endo is a bit of a gray area but the BSGE accept referrals for 'the named condition' and women are being seen for suspected endo on this basis.

    But you don't have NHS Choices in Scotland. You have Good Medical Practice (essentially the GP charter that all GPs must abide by) and, along with many other requirements, GPs must respect a patient's right to a second opinion. So she is entitled to a second opinion on what you suspect to be endo so she cannot be denied a referral to another gynaecologist. But when it comes to the centres the only requirement in Scotland is that women with severe endo must be referred to a specialist centre (RCOG 2008). There are women on here from Scotland with already confirmed endo who have all the symptoms of severe disease most likely missed in general gynaecology who can't get a referral to a centre because it hasn't been confirmed.

    If there isn't a centre in the woman's health board then referral out of the area is through a system called Safehaven where a panel assesses each case and decides whether a referral to a centre is warranted. This sounds a bit like the central referral process in England where a choice of consultants is supplied to choose from, unless the woman has chosen a specific consultant through NHS Choices. So in Scotland you are only likely to get such a referral if severe endo has already been confirmed, which it hasn't. I would think that it is almost certain a referral won't be given for pelvic pain that may be suggestive of missed endo but if anyone from Scotland has got referred to a centre without a diagnosis it would be helpful to know how they got it.

    You are likely to need some sort of evidence and the only evidence you could get is from seeing one of the surgeons in one of the centres privately (usually around £200) and convincing them that your daughter has suspected severe endo and needs to be seen in a centre, in which case she would then transfer to the NHS. So that is what I would advise you to do at this point. It might also be worth googling gynaecologists in your board and examining their profiles just in case one comes up who does have specific excision training.

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