Help please - have come to a standstill

[KittyTherapy]

Hi ladies,

Bit of a desperate post for suggestions. My last post has more context but basically my BSGE endo centre referral has been rejected as I don't meet the criteria under DIE. I have tried to challenge this, and have spoken with PALS but no success.

My general gynae has discharged me as she can't offer anything more for me (I also don't want to be cared for under my local team due to many many issues and feeling failed basically).

I am really feeling hopeless now about next steps. My recent ultrasound suggested endo regrowth since my lap last year (ovarian cyst & ovaries 'kissing' seen on scan).

Symptoms are ongoing and seemingly new ones all the time.

Im under gastro now for issues but no definitive answer has been given as of yet. I've chased them today for a follow up appt after my colonoscopy was essentially NAD.

I have no idea what to do now. I'm not under any gynaecology team at present. Should I ask my GP to refer me to a different team? Will that help when they won't be specialists?

A few people suggested contacting my local MP to advocate for me however will that make a difference if the strict criteria remains the same?

Ive been focusing on lifestyle changes, have been following an anti inflammatory diet and as a bonus lost almost 1.5 stone. Been trialling supplements too.

Why is womens health so shocking. Sick of the uphill battle. I'm not even 30, the thought of living with this progressing is very depressing.

Sorry for the miserable post, just very deflated right now.

Thank you if you spent time reading this, even if you're unsure about advice xx

[Scoutybob]

I thought kissing ovaries was a sign of DIE? If your normal gynae has said you're too difficult a case for them and they can't do anything, and the BSGE won't accept you - you absolutely can't be left in the either. What did PALs actually say? Surely you've got to push for another BSGE centre?

[KittyTherapy in reply to Scoutybob]

I just don't understand it either. I've tried my best with it all.

PALS said " we have sought the assistance of the [name] Directorate Support Manager of Gynaecology and this is the response;

[Name] advises that two Endometriosis Clinicians made a clinical decision to reject your referral and this can not be overturned. As you do not have deep infiltrating endometriosis you do not fit the criteria to be seen in the Endometriosis specialist service.

I trust you have found the above information of use and you are reassured that your concerns have been taken seriously."

Do you think another centre would accept me? They seemed quite sure i don't meet the criteria, are they all the same?

[Scoutybob in reply to KittyTherapy]

I really don't know I'm afraid but you need to dig in to it more because you can't be left hanging. My understanding was that kissing ovaries at least indicated DIE but that may not be enough for BSGE right now. It all depends on that imagery I guess. Could you see another general gynae and push for an MRI? Or is there any way you could afford a private MRI? I know it's not ideal but that may be enough to get better imagery that could confirm DIE to get the referral? x

[h0lli3]

I think either do some googleing of other gynaecology services and use your NHS Choices right to ask your GP to refer elsewhere. Or, as your GP for a referal for a second opinion and sometimes this is then done at a private hospital. Hopefully either of those will order an MRI, to then be referred to endo centre.

Another option would be to ask for another referral straight to a different endo centre and hope they accept it with the ultrasound findings.

nhs.uk/using-the-nhs/about-...

[Lindle]

You mention in your last post that you have all your notes. Did they find endometriomas and/or deep disease at your lap. If you want you can block out all identifying details from the report and post here. Same with the ultrasound report. These would be useful to see where you stand with the referral criteria.

[KittyTherapy in reply to Lindle]

From the lap last year, there was an endometrioma and adhesions tethering my uterus, ovaries and bowel together. The gynae said the adhesions where extensive but didn't give a diagnosis of DIE.

Ive been pushing for more investigations including gastro as I was wondering if the reason for bowel troubles could be endo.

The latest ultrasound shows an ovarian cyst (they've called it a simple cyst) and ovaries appear stuck down & kissing so suggested adhesions have returned again. I dont understand how I can just be left like this now. Seems wrong to me.

[Lindle in reply to KittyTherapy]

Was your surgery done in a specialist centre - did they excise it all or was it diagnostic?

[KittyTherapy in reply to Lindle]

No, it was done with general gynae & it was to remove/treat.

Ive had no end of trouble with the care I've received, for a start they did not want to offer me any further investigations when my abdominal US came back clear. I had to essentially demand further tests and it was from the MRI that she put me on the list for lap. I later find out (from my case notes I asked for in a SAR) that the suction equipment was not working during surgery and they struggled to control bleeding. They did not send me home with a pain relief plan and i was in agony. At my post op follow up appt, I was seen by a different member of the gynae team and they incorrectly told me wrong information (tried to say my lap was NAD) which i had to fight for this to be addressed.

And separately to gynae dept- i had a colonoscopy where they gave me somebody else's diagnosis & written report!!!

So i most definitely don't want my care at this local hospital anyway.

Sorry for the rant! It's really getting to me just lately. Appreciate all your replies x

[h0lli3 in reply to KittyTherapy]

Might be worth writing all this down in like a time line and how it made you feel and the impact on your life. You could send the local hospital a letter as a complaint to raise awareness of their errors and lack of help/ treatment, but also to get some closure.

[Dogmad6]

If you can possibly afford it, do research to find a good endometriosis specialist and pay for a private consultation. That is what I ended up doing many years ago before they had specialist centres which don't seem to be all they're cracked up to be. The private consultation can be the way to open doors. I ended up having three operations in a different part of the country but was worth it as it improved my situation although didn't cure me because there sadly is no cure. I didn't have any scans as the specialist said it was pointless as the only way to properly diagnose endometriosis is via a laparoscopy.

I hope this may help and wish you luck. It's appalling you've just been abandoned like this. xx

[KittyTherapy]

Thanks, I could probably afford a private consultation but investigations and / or surgery privately would be out of the question for me