Endometriosis UK
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Why does everything have to be so hard?

Was originally referred to a BSGE centre back in May. They misplaced the referral for nearly a month, and I had to get a second one sent through. They then gave me an appointment for September.

They cancelled this and gave me an appointment last week, so I spent £30 on train fare and travelled into London for it. I had a scan but they cancelled the appointment with the doctor on the day. Rang them on Monday to try and get an appt with the doc, only to be told that I couldn't have one because there weren't any. Rang again yesterday and was told that an appointment has been made for me in October. That's 10 weeks away. Add on to that their 6 month wait for surgery, and it will be nearly a year by the time they actually do anything that might help me. So much for the NHS 18 weeks to start treatment :/ The scan last week was effectively a complete waste of time. All they did was frighten me, tell me I needed surgery (which I knew anyway) and then not put me on the waiting list because a doc has to do that.

I have contacted the secretary at the clinic and PALS because it's just not good enough, but really, why does everything involving this stupid disease have to be such hard work? Clueless GP's. A&E docs completely out of their depth. Primary care refusing to renew prescriptions. And now this.

No point to this really, just a moan.

2 Replies

I completely agree with you!! Such a shame- I have been told - to have a baby, not drink coke, not use tampons, you sure it's not just aches and pains ? by general gps then went to kings three weeks ago and despite a surgery diagnosis three months previously the "replacement " consultant, who after hearing my endo story then went to discuss it with a colleague! Told me she thought it was ibs!!!! I have ibs , known exactly what it feels like and I have not had problems with it for nearly 7 years. She went red and sheepish after I said this-😳 Seriously . The reason she gave for it not being endo as the major source of pain was that my pill ,Lucerne, made no difference to the pain, that was the most shocking statement of all!!

However did see an amazing endo nurse straight after who did not in so many words 💩💩 what the consultant had said but did believe me, did sympathise and referred me to pain team, physic and for another scan , different meds etc.

Take care and keep posting x x


I know very hard and all this waiting makes thinks very difficult, I was told in Feb. That I needed another laparoscopy and should be within 3 months, end may, nothing, then told June July, nothing, now been told Aug September, and I've rung pals, and consultants said to expedite the appointment, still nothing as there is no way of fixing me in, don't really understand pals, if even if your in the right and consultant agrees, still nothing changes, xxx


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