Rant rant rant !!!!

[katyhill]

Sorry guys I need to rant. So frustrated! ! Been back to gp today for advice (my next consultant appointment isnt till august) as on my 2nd injection of zoladex my symptoms have got worse. My gp has told me that zoladex takes time to work and that it will stop my endo (really)!!!! Oh and also when asked if my consultant should of offered me a laproscopy or ultrasound gp's response " endo rarely is detected using these methods" double ahhh. The final whammy I asked to be transferred to a endo clinic. ..can you guess the answer??? No there isn't one local and your gyne consultant will deal it" . Guess I'm going to have to try and get in sooner to see my consultant. .wish me luck on that one!!! Sorry for rant.

[Mummy1982]

Hi hun.

I'm sorry to hear that you are suffering from such pain.

Have you checked to see if there is a endometriosis centre near to you? Or a specialist on the Bsge list nearby?

Endometriosis can't be detected via a ultrasound but a laparoscopy is the only way they can confirmthat you have endometriosis.

Is the current consultant you are seeing on the Bsge list?xx

[katyhill in reply to Mummy1982]

Thanks for your reply. I have just had a quick look and my consultant doesn't appear to be listed however I have just found a provisional endo centre nr my home town. Not sure what the difference is between a fully accredited centre and provisional. I am considering paying for a mri?? Don't suppose you know if endo can be picked up sucessfully through a mri?. Xx

[Mummy1982 in reply to katyhill]

I think that endometriosis can be seen via MRI scan. But you shouldn't be made to do that hun.

I'm not sure what the difference between a provisional endometriosis center and a endometriosis centre.

But I would imagine thar the provisional centre would be better than just sending you to a gynaecology place.

I was really lucky I was referred to a endometriosis centre, and I didn't even know the difference between gynaecology and endo centre.

I would ask to be referred to the provisional one if that's what you have near to you xx

[confusedandworried]

OMG I am so fed up of hearing about so-called medical professionals not having any understanding of endo (yet they think they do) and not knowing about the BSGE accredited endo centres and the fact that they should be referring women particularly with severe endo to such centres as per NHS guidelines! How can such ignorance continue to exist?!?!?

If the zoladex remains unhelpful in reducing or eliminating your symptoms for the time that you are on it then perhaps afterwards ask your gynaecologist for an investigatory laparoscopy to identify where the endo is and the severity - although admittedly the danger in this is that the skill and expertise of a general gynaecologist to recognise endo in its many different forms varies from specialist to specialist so you can never be sure whether they have correctly diagnosed where the endo is and the severity of it. However, hopefully then you will be in a better position to demand that either your gynaecologist or GP refer you to an accredited endo centre as per NHS guidelines. And point out to said GP that as per NHS guidelines you have the right to choose anyone of the accredited centres nationwide - it does not have to be local or the nearest one.

And by the way rant away because it IS justified! x

[katyhill in reply to confusedandworried]

Thank you so much. I never knew about the nhs guideline. I suppose my choice now is do I stick with my gyne and hope for the best. Or push to be transferred to my nearest endo. It's appalling that we all have to jump through hoops to get anywhere on the nhs. Makes my blood ball.😈😈😈

[confusedandworried in reply to katyhill]

FYI MRI is only useful in picking up deeply infiltrating endo and again comes down to the skill of the specialist interpreting the results. MRI is still relatively expensive as well so isn't often done as routine if endo is suspected.

Diagnostic laparoscopy remains the gold standard and only definitive way of detecting endo at this point in time.

Provisional endo centres are basically centres that haven't quite qualified yet to be given full accreditation. They are still working towards full accreditation. If you have a look on the BSGE website it explains it a bit more on there.

Whilst in can be tempting to go to your nearest centre, be it provisionally or fully accredited you are not obliged to and sometimes you have to travel to find the best treatment service foe your needs.

Mine in fact was 2.5hours away which initially worried me as the thought of having to be driven back all that way after my surgery which took almost 7 hours filled me with dread! But I can honestly say it wasn't that bad.

Best wishes, x

[17yearoldgirl]

Hi, im sorry that youre in so much pain, ive just started the prostap injections yesterday and i was told that they will take up to 3 months for us to start seeing difference in pain and that the pain will get much worse before it gets better. that might be the case with your injections too?

I hope that you get well soon and that your gp will help you until you see the gyne!

stay strong x