I am 39 years old and was officially diagnosed with endo about 4 years ago but have probably suffered with endo symptoms for about 20 years.
Having had various ops and treatments my symptoms were managed for a while but the endo seems to have come back with a vengeance. I have been off work now for about 2 weeks with terrible pain in my pelvic area, groin, lower back and legs.
I am due to see my Consultant in September but feel I can't wait that long, I am popping painkillers like smarties with little effect....not a long term solution really.
I contacted the Consultants NHS Secretary and she told me there was no chance I could be seen earlier, not even as an emergency appointment. I then rang the Consultants Private Secretary and she said he could see me in a couple of weeks but if I transferred from NHS to Private then I would not be able to see him on the NHS for endo again. I would have to continue my endo appointments with him as a private patient.
I am so frustrated at the moment...just don't know what to do...I know I can't wait until September to be seen as an NHS patient.
Has anyone experienced similar?
Written by
SL72
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Mmm, I'm not sure why the private sec said you 'couldn't be seen on the NHS for eno again'. I don't believe that is true, I am an NHS med sec myself and I often have patients who choose to see my Cons privately whilst remaining on the NHS. In fact, lots of patients 'flit' between NHS and private land as medical insurance doesn't always cover everything! I often have patients who are seen privately initially but come to the NHS for their treatment.
I would think you have a right as a patient to remain on the NHS even if you seek to see the same consultant, or another consultant privately. You don't have to 'transfer' to the private - having an appointment privately does not mean you've transfered. I would speak to the private secretary, you may get a different story!
Unfortunately I can relate to the NHS sec not having any earlier appointments, the pressure on availability of appointments currently is immense.
I hope you are able to be seen sooner and move things forward.
I spoke to the Private Secretary too and she said the same that if I saw him as a private patient I would not be able to see him on the NHS for the same thing.
I do appreciate the constraints on the NHS but almost feel abandoned.
I started on the NHS but to be honest the pain was that unbearable I would have paid anything to be normal again.
My consultant sees me privately and he does all my ops on the NHS, he also gave me the option of seeing him back on the NHS after my first op. But to be honest and you know yourself when the pain gets that bad you can't wait 6 months to see him.
I wait only a week now to see him and its not badly priced. First appointment was £210 and the ones after are £80.00.
I had my appointment with the Consultant yesterday....my worse fears confirmed.
The Consultant said my pelvis was in such a bad state...my tubes were both blocked with scaring and my ovaries were plastered to my pelvic bone...amongst other stuff. He said I need a total hysterectomy with bilateral salpingo-oophorectomy: the womb, cervix, fallopian tubes (salpingectomy) and the ovaries (oophorectomy) are to be removed...followed by HRT until I'm 51.
Even though I was expecting to be told about a hysterectomy I was not quite ready to hear how major this op is. The thought of having my stomach cut open is freaking me out.
Just feel like I'm on an emotional roller coaster.
Today we face the daunting task of telling our parents. How do we tell other people? I can't even say the word hysterectomy without breaking into floods of tears.
My husband is being so supportive, attentive, caring and understanding but I still feel so alone.
I'm scared...how will I feel after the hysterectomy....do you feel any different with bits of your inside missing?
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