Discharged but no further forward!!!

[Mewesy]

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.

[confusedandworried]

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

[Mewesy in reply to confusedandworried]

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.

[Live_Life2dMax]

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

[Mewesy in reply to Live_Life2dMax]

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,

[Mewesy]

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

[Mewesy]

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

[angelyn]

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

Xx

[Mewesy in reply to angelyn]

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

[angelyn in reply to Mewesy]

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

Hugs

Xx

[Mewesy]

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