Discharged but no further forward!!!

I have suffered endometriosis for 7 years. I hsve been in none stop pain for 8 days, so much so that i have been stuck on the sofa, i have been taking tramadol, paracetamol and oral morphine. On Saturday my parents took me to a and e as the pain was so bad, I was given I.v morphine and put on a gyne ward and yesterday was given a internal scan, the doctor told me that as I had had 2nd zolodex in december it could not be endo, she could not see endo and my ovaries did not look stuck to anything so the pain must be caused from some other problem but it is not a gyne issue. I was then discharged (in the same amount of pain ss i went in with) and told to go back to doctors.

so much questions are:

Can endo be detected with an internal scan? (I was under the impression it can only be detected through a laposcapy).

Has anyone else had this problem? If yes, what happened?

I really am at my wits end, I am depressed, down, fed up and I just don't know what to do next.

13 Replies

  • Hi, I'm sorry to hear of your experience.

    Sometimes endo can show up on a scan, particularly cysts on ovaries but laparoscopy is still the only definitive way to diagnose endo.

    For reference it is best to be treated by an endo specialist and not a general gynaecologist. You can ask your GP to refer you to any specialist accredited endo centre in the country. Your GP may not of even if heard of these centres - mine hadn't and neither had I until recently!

    A list of the accredited centres can be found on the web: bsge.org.uk.

    Some on the list are private only so unless you have either private health insurance or the money to pay make sure it is a NHS one!

    Unfortunately many general gynaecology surgeons lack the required skill to excise (ie cut out) endo. Excision surgery is now considered the gold standard for removing endo so please be wary of anyone who wants to laser or burn away the endo. Although it's worth baring in mind that some may use a laser as a cutting instrument which is ok.

    Endo centres have dedicated teams consisting of specialist endo surgeons, bowel surgeons, endo nurses and pain management consultants to help provide a holistic treatment approach to endo.

    You have the right to be referred to any accredited endo centre in the UK if you have or are suspected of having endometriosis.

    Best wishes

  • Hi confusedandworried, thanks for you reply! I have had the same gyne for 7 years but on Thursday last week I asked my doctor to refer me to an endo centre in my area and that is where I have spent the last couple of days, in hospital, I have an appointment with the specialist but not until April 13th. I think it was just a general gyne that did the scan.

  • Hi - please read my posts on endo and how to get seen by a specialist. Just click on my username.

    But first can I ask:

    You say you have had endo for 7 years. How was it diagnosed back then and what treatments have you had over those years?

    What gave rise to you being given Zoladex in December?

    What symptoms do you identify with?

    You are right in that the only definitive way to diagnose it is by laparoscopy which is why I'm wondering how your GP diagnosed it 7 years ago. The advice you were given at the hospital was appalling and for a gynae ward to know so little is shocking and probably at some point in time worth writing a letter to try and ensure others are not told the same. But for now it's your care that is important. As the previous post confirms, an endometrioma is the only form of endometriosis that would show on ultrasound. This arises when endometriosis tissue gets inside an ovary and bleeds when you have a period but the blood is trapped inside so gradually builds up as a blood-filled cyst. It is the fluid that shows up, so the scan is not detecting endometriosis but a visible consequence of it. Endometriosis itself does not show up in any definitive way as the tissues cannot be distinguished from other tissue. As for Zoladex this only halts endometriosis in some people while they take it, but all medical treatments are only temporary.

    If you are happy to answer my questions I will be more than happy to try and help you get to proper treatment.


  • Hi Lindley, thank you for replying. I am more then happy to answer any questions that u may have, i am soo worried.

    I was diagnosed after a year of pain by a laposcapy. I have since had a 9 month course of zolodex 5 years go where i fell pregnant with my son, another laposcapy, put on the pill for a short time and now I had my 2nd and last zoladex (I'm 5 month in) injection. I hope this all makes sense.

    I just don't know what to do, i can't eat, walk much and I've lost weight. My family r so worried, understandable. I am also starting to think 'could it be something else?'. I don't know if it is worth mentioning but I haven't had a period since the summer last year and before that was when I had my son.

    Thanks for you advise

  • Hi again

    I now see that you already have a referral to a specialist and that the inappropriate information was given to you by the general gynae team in that same hospital? Is the specialist on the BSGE list? If so they should find it if you do have any new endo deposits. You already have endometriosis - it was diagnosed 7 years ago by laparoscopy. It is an immune system disease so once you have it your immune system is altered, even if all actual endometriosis is removed. The potential is always there. How they could have told you that you can't have it is bizarre so don't take any notice of that. I had what would have been the tiniest amount buried in my Pouch of Douglas that no general gynaecologist or scan would have found, but still ended up with widespread stage 4 through failure to treat properly. The reason you haven't had periods is due to all the medication you have been given that stops you producing orstrogen via your ovaries. But a little known fact is that endometriosis lesions produce their own oestrogen within the cells so when it is cut off from the ovaries they can start producing their own. This is how post menopausal endometriosis works, including in women who have their uterus and ovaries removed.

    The scan would have been internal. It's called a trans vaginal scan and gives the best view of the pelvis, but take some consolation from the fact that if you had anything else going on it should have shown up.

    All you can do is hold on in there but prepare for your consultation. Be sure they are on the BSGE list and that you are seen by the named specialist. Then confirm with the specialist that he/she will be operating on you and not the general gynaecologists that you have already found to be unqualified. Obtain a copy of the referral letter from your GP (this is your right) so you know the contents of the letter the specialist will have in his/her hands. You should always know what has been said about you. The history your GP has reported is likely to be inadequate so take some time writing a medical history of your own to take. Think about your symptoms and where your pain is and describe it all on paper. Give pain scores for various types of pain you have (how much does it hurt out of 10) so you are not put on the spot with unexpected questions.

    I hope it all goes well, but keep us informed x

  • Hi Lindley, after advice on this website i looked on the BSGE list and that is have i found the endometriosis centre that isnt as close as other hospitals but hopefully worth the extra ttravel.

    Soo after your email yesterday, i myself thought in my own mind that it wasnt correct the way the hopital has gone on but wasnt sure if it was me being a little bit of a drama queen so thnk you very much for you help, advice and kind words they helped give me the confidence to visit my doctor. I explained everything to him and he agreed that the hospital had behaved inappropriately, my medication has been upped, (not ideal but neccessary for now) and he is going to get my appointment brought forward.

    Thank you very much for your help and advice, i have took it ll on board, it is so nice to have people like your self that knows exactly what I'm going through, thanks again x

  • I'm so glad to have helped. Keep us informed x

  • I don't know if it makes any difference but the scan was internal thanks

  • Sorry to hear you are in so much pain. I was diagnosed in dec 2013 through a lap, which was only given to me after much perseverance and nagging and it wasn't for endo (which I didn't realise was till then) it was for a ruptured ovarian cyst. I had countless scans to be told nothing of any concern including an MRI. When I had a lap they discovered I had serve endo with extensive scaring and everything inc bowel was stuck down and together. They did nothing but bring me back in the following year for open surgery. That was not with endo specialised hospital. I eventually got referred to a specialist surgeon as the open surgery was still unsuccessful. They scanned me and there first response was my ovaries appear stuck down and there is evident endo.

    I personally think if it's not a specialised hospital for endo then they are blatantly unaware to what to look out for. It's very distressing. Especially when they keep saying it's not endo related it's just IBS.

    I travel over an hours drive to see my consultant, not the best ride back after an op, but I have full confidence in him and he doesn't treat you like a hypochondriac.

    I often found the more painkillers I took there more I felt low and not in control. I just stick to paracetamol and iburophen even post op and the trusty hot water bottle.

    Don't give up. You know your own body. Ask to be referred xx

  • Hi Live_life2dmax, thanks for your reply! I have been referred so hopefully I will get answers that may help but until then I am just going to hae to cope. I agree that the tablets dont help the was my mood is but without the pain killers the pain is just to much to cope with, i am struggling to cope with the pain after having the medication. Thanks for your reply,

  • I have endo that didn't show up on a scan. I honestly can't believe docs still rule out endo based on a clear scan. If I hadn't pushed for lap they wouldn't know I have endo on (and possibly in) my bladder.

    Hope you get some answers


  • Hi angelyn, it is unbelievable that some doctors do this when they have no idea what they r tlking about. Without this website i would have just said ok, walked away and suffered for goodness knows how much longer.

    Thanks for your reply

  • It's no problem! I feel the same about this website - sometimes I seem to know more about the condition than the docs!:p



You may also like...