Feeling deflated after gyn consultation

[xxemmaxx]

Hey ladies has my consultation this afternoon for a diagnosis of possible endo I explain all my symptoms and had a internal examination the consultant basically said she cant feel and lumps bumps Inside so probably not endo she only way will no with the lap which expecting to have but she basically like is it worth having it to find you don't have it feel low like my symptoms are in my head xx

[confusedandworried]

Oh dear I would be a bit worried if your consultant is also going to be undertaking the exploratory lap as she clearly doesn't know much about endo if she thinks it can always be detected during an internal examination. Unfortunately unless you have nodules it's unlikely to ever be detected through internal exam! Laparoscopy remains the best, in fact the gold standard, in diagnosis.

I am assuming your gyni is a general gyni and not an endo specialist? As endo can come in different forms and can be hidden in lots of nooks and crannies inside of us it can be missed by General gynis who tend to lack the skill and experience to identify and thoroughly excise (ie cut out not burn) the endo.

If you are in the UK you would be best to be seen by an accredited BSGE endo centre if after your lap either nothing was found and your symptoms continue and reflect endo symptoms or if endo is found then it really needs to be excised by a skilled surgeon not a general gyni. You can find a list of accredited endo centres at the following website: bsge.org.uk and you can request your GP refer you to any of the nationwide centres, it doesn't have to be your local one.

Unfortunately not all BSGE centres are equal, some are better than others. As you cannot discuss individual centres/surgeons on this website other than through PM if you aren't a member of the Facebook group Endometroplis it may worth joining as you are allowed to discuss individual consultants/centres on this group.

I hope this helps.

Best wishes, Jo

[xxemmaxx in reply to confusedandworried]

Hi jo I believe she will not be doing it from way she spoke she also believe that as my symptoms occur threw out month instead just period it worst when having period that it's not endo x

[confusedandworried in reply to xxemmaxx]

As I thought, she really doesn't know much about endo! Symptoms can be cyclical but can also occur at other times of the month or indeed all month. I would want to ensure that if she does find endo that she doesn't treat it as she is more likely to do more harm harm than good. Best wishes, Jo

[xxemmaxx in reply to confusedandworried]

Thanks jo she made me feel like it was all in my head x

[confusedandworried in reply to xxemmaxx]

Unfortunately it is all to common for women with endo to be made to feel like they are hypochondriacs or mentally unwell. I recently read a post of a woman who took 4.5yrs to finally be diagnosed but not before she had been fobbed off with being told its IBS (again very common) and also referred to a psychologist as it was clearly all in her head! If your symptoms match endo my advice would be to learn as much as you can about this horrid disease and sadly don't rely on medical professionals to know it all and give you all the facts. There are many medical professionals still out there providing antiquated and inaccurate advice and treatment. I was told 20 years ago pregnancy and/or hysterectomy "cures" endo and I know women today are still being told the same thing by some doctors/specialists - it wasn't true 20 yrs ago and it's still not true now! Unfortunately these myths then sometimes get perpetuated amongst women themselves on forums so it's really important to take the time to look at the research from well respected medical journals and scholarship papers which can now at least be found online. My own GP told me recently that because I had a hysterectomy (ie cervix and uterus removed due to Adenomyosis not endo) no new endo could develop as endo came from the uterus (ie endometrium). I was able to explain to him that research shows that although the pathologies are similar endo tissue is different to the endometrium. Furthermore the idea that endo came from the endometrium was based on the 1921 Samson theory which is flawed as women born without a uterus and even some men have developed endo! A good source of well presented info on endo that is fairly easy to read by us lay people can be found on the Endopedia website. Sadly if it is endo you really have to take charge of your own treatment plan and learn as much as you can as, as you have already discovered, there is a lot of misinformation out there that medical professionals are still regurgitating. Best of luck, Jo

[Endomum in reply to xxemmaxx]

Emma, we had same nonsense being thrown at my teenage daughter for years before we insisted on laporoscopy . No doctors we've met want to acknowledge it's possible to get endometriosis from early teens. Good luck with laparoscopy x

[SassyMac in reply to xxemmaxx]

Emma I was finally diagnosed with stage 4 endo and my symptoms were at first ONLY with my period! It was HORRENDOUS and I would be in bed for a few days! She sounds like she hasn't done her homework xx

[SassyMac]

Yes! It is totally worth having a lap! That's the only way to definitively diagnose endo! Make sure it's with an accredited endo centre as well hun! I had the run around for years and from many different doctors. I was finally taken seriously 7 years after my symptoms started and was offered a lap a few years ago where I was diagnosed with stage 4. I recently had surgery to have it all removed with a fantastic surgeon. Get the lap girl xx