First appointment with a specialist

[Lavenderpetal]

Hi everyone,

I've just had an appointment booked for my first endo specialist! I have gone private out of pure desperation for help. I'm not diagnosed yet but have had an mri scan which didn't show anything! But my gynecologist agrees it's endo. I've booked a specialist as gynecology is taking so long.

Basically I don't want to waste this appointment especially as I'm paying for it and really need someone to help me get answers. Any tips for what to take/ask at your first specialist appointment? Or tips in general I'm just scared I'm going to waste this appointment by being overwhelmed.

Thank you! X

[TennisCourt]

Brilliant news! This is what I did in August, my surgery is start of Jan (private) and if I didn’t do this I would still be waiting for gynaecology referral🙄

For me I wrote in my notes on my phone all my symptoms, in a tick list so I could tick along. Literally every single symptom I told her about.

I also had a note in my phone everything I wanted to discuss about it in general, ticked off as I went along.

I did ask her if it’s ok to go through my notes and she was super patient with me.

I even showed her pictures of my severe bloating.

And I showed her my flo app where I’ve tracked my bleeding for 3 years so she can easily see how irregular my bleeding is.

In my experience going private with a specialist, it was amazing. It was the first time I was actually validated. She had lots of patience and was very knowledgable.

Good luck lovely! Xxx

[TennisCourt in reply to TennisCourt]

Oh and ask what next steps will be. For me she said surgery, (I have never had an MRI) but I have had ultrasounds and colonoscopy etc.

They can put you back on NHS wait list but for my area it was 18 month wait xx

[Lavenderpetal in reply to TennisCourt]

Thank you so much for your reply that's so helpful I have the flo app to show Irregular periods and lots of spotting I didn't even think to show him this! And I will deffo do a tick list on my phone!

Yes that's what I'm worried about forgetting or them not making me a plan! I think the waiting list is similar where I am for surgery but I'd take anything over this atm.

Thank you again! And hope you are doing well😊 xx

[TennisCourt in reply to Lavenderpetal]

No problem at all! Due to us all being fobbed off by NHS doctors who don’t even know what Endo is I think we all get nervous for appointments but personally I feel like going private and with a specialist is a completely different experience so hopefully same for you🤞 xxx

[Lavenderpetal in reply to TennisCourt]

Exactly I think that's it! Ahh you've given me some hope, thank you so much 💗xxx

[BloomingMarvellous]

there is a check list on the endo uk site. Worth filling in and making a copy for them. Also worth putting a brief chronology of your issues over time , treatment you’ve tried. If you can indicate rising severity or via a number scale rather than words that seems to help. Ie between 1-10 and frequency . Once a month differs from daily or weekly. Helps get a perspective as to what issues are worsening and which are current constants. A short resume of what life issues it impedes or curtails . Make them a copy. Saves having to fire it all off to them in short time slot and leaves more time to discuss the priorities.

Write your questions down. For you and for them. Ensure you get answers to the starred ones that are your burning concerns.

[Lavenderpetal in reply to BloomingMarvellous]

Hi,

Thank you so much for replying! That's so incredibly helpful😊 I will deffo check out that check list! Also will do the chronological order. Thank you for sharing you've given me such great advise! Xx

[BloomingMarvellous in reply to Lavenderpetal]

You’re very welcome ☺️

[Kricam78]

Nothing to add tips wise but just to say that I've done the same thing! The last straw came when I saw my GP (I see a different one every time!) And they tried to tell me endo doesn't cause gastro symptoms. Then I was in so much pain I missed Christmas day with my little boy. I'm tired of being passed from pillar to post with NHS and not getting any resolution, and it having such an effect on my life. My appt is in early Feb with Davor Jurkovic for consultation and ultrasound. I'm hoping he can confirm bowel endo so I can convince my GP to refer me to a BSGE centre. I can't afford private treatment unfortunately.

[Lavenderpetal in reply to Kricam78]

Hi,

Sorry for a late reply! I'm so sorry you missed Christmas with your little one. It's beyond heartbreaking how much this takes from us. Endo 100% causes gastro problems trust me and I'm the same a different Dr every time with a different opinion to the last. I understand it took me a long time to find that money for a private appointment and I don't have anymore to have another one but I was desperate like all of us for an answer.

Sending you love and hoping you get some answers and help soon xx

[Kricam78 in reply to Lavenderpetal]

Not a problem re delayed reply 😊. Have you had your appt already? If so, did you find it worthwhile?

[Lavenderpetal in reply to Kricam78]

Yes I've had my appointment and even though I wasn't 100% happy with the outcome it was definitely worth while. I got more information and help from that 45min appointment than I ever have from hours in hospital and doctors appointments. He's putting me on dienogest which I don't want to go on but also I'm now on the list for laparoscopy because of him😊 plus he tailored my medication to suit me best and I must say its working I already can see an improvement on my daily pain. I really hope yours goes well! Make sure you take a list of symptoms and some background on your medical history. Wishing you the best xxx