Private Consultation Findings - thoughts on next steps

[usernames123]

Hello everyone.

I am looking for some advice and experiences on Dienogest / Zalkya.

Diagnosed in 2022 via lap by general gynae and never prescribed anything. Own GP has tried me on contraceptives & meds for pain management, which nearly tipped me over the edge. After a scare with my mental health, I decided to come off everything and see a specialist privately.

I've had a pelvic MRI which 12 months post surgery has found growths tethering the bowel & bladder, but my ovaries and tubes look ok. Frustrated to say the least. He was very careful not to confirm if these have been there pre or post my 2022 surgery!!

I'll be honest the report is really confusing, but he's told me that I am borderline S4 and don't need another surgery YET.

As I am not on any contraceptive he has said I must try some hormone treatment to stop the growths which are currently 35 x 2 x 21 mm & 19 x 3 x 26 mm. Then in 6 months, another MRI to review how they have reacted and plan from there.

Bearing in mind that I am paying privately at almost £1000 a time for an MRI, I am a so frustrated that I was refused access to a specialist on NHS.

Anyhow, I have never been offered a treatment for endo, no meds were ever offered on the NHS other than the usual, go on the contraceptive and take anti depressants! Has anyone ever been offered this as standard protocol for endo?

I have an appointment with my NHS doctor on Friday so I want to go in armed with information incase they refuse to give me it.

Thanks for reading 🙃

[Lindle]

Is the private doctor a surgeon at an endo centre?

You absolutely don't have to take hormone meds - these do not stop endo growing. They may reduce inflammation but the disease can continue growing and this is more so when severe. The NHS England treatment specification is clear in saying:

'Medical treatment is only of benefit in mild cases. Surgical excision is the recommended treatment in moderate or severe disease'.

This doctor should have immediately written to your GP saying you require referring to an NHS endo centre. I don't know where you are in the UK but referral is more straightforward in England. Now you have evidence of deep endo fibrosis your GP can refer you directly. I'll link the NHS England treatment spec belo. If you search for 'Endorevisited' and join and they will look at your scan and guide you further.

NHS England treatment spec:

england.nhs.uk/commissionin...

[usernames123 in reply to Lindle]

Hi, thanks for replying.

My new private consultant is an endo specialist and actually founded a specialist endo centre. However I’ve been on the waitlist (nhs) for 10 months and they contacted to say i wouldn’t be seen any time soon, so I opted to see him privately instead.

I’ll take a look at that site, thank you.