First endo specialist meeting - what to ask!

[Vix06]

Hello Ladies.

This Thursday (18 April) I finally have my first meeting with an endo specialist at UCLH, and I was hoping some of you could give me some advice about what to ask etc, as I'm a bit worried!

To put my case into context - as I've found from being on here that there are so many different types and symptoms, for over a year I've had symptoms of excruciating pains during sex, and bad pains when I take a break from my pill. I finally went to the doctors about it, and eventually got refereed to a gynaecologist.

In January I had one of those horrible prob-ey examinations, and after almost an hour of being examined the gynae found (and showed on the ultra sounds machine) what she thinks is a recto - vaginal endo node. After she found it, all I was told is "oh its probably endometriosis", I was like...ok (having never heard of it) so I asked - so how do I get rid of it? she shrugged and said "oh, surgery" I was somewhat shaken up, and asked if it could be effecting me badly in other ways, and she just shrugged again and said "your fertility"

That's all I got! So for a 26 year old it was..disease I haven't heard of, surgery and possible fertility in one quick conversation...followed by have a nice day!

I went to see a GP to ask for more details, but unfortunately he wasn't an expert so just re-assured me that I'll be fine, and to prepare questions for the endo specialist.

But...my appointment is now two days away and I'm a bit stuck on what I should be asking, what I need to know - my GP told me that you have to often pry information out of specialists, but I don't know what I need to know so don't know what to ask!?!

I've spoken to people about having a Lap, which sounds terrifying, but necessary, and I'd much rather have node removed than keep it, but do any of you have any suggestions or recommendations?

Any advice would be very appreciated!

Thanks in advance,

Vicky x

[synnova96]

I'm going there on thurs afternoon too for my first appt with a senior registrar. I've been seen elsewhere in the past and have had two laps. The endometriosis uk website has a good section on what questions to ask. Also can you take a friend or relative with you to help you remember what they say. I always feel like I check my brain in at reception when I go to hospital appointments despite having worked in the nhs myself in the past!

I had two children before I found out about my endo. (I had it in the same area as you.) So it doesn't always affect your fertility. I had another baby after my first lap too. Good luck for thurs.

[catswhiskas]

UCLH is by far the best place to be, I've just had my keyhole surgery there and they explained everything and still ring me every few days to see how I'm recovering at home!

I'm 27 so it came as a shock to me when I was diagnosed feb 2012, especially the fertility talk. Just write everything down you want to know, what they find, what happens next, when that will be and the the future.

Try not to panic, I know it's easier said then done, but honestly you'll be in safe hands and hopefully this will be the start of the ball rolling for you.

Good luck

[Vix06]

Hello,

Thank you for your responses and support! I pretty anxious and just really want to get it over with now, so we can assess the options!

I was trying to decide whether to take my mum in with me of my boyfriend...which will either be mentioning sex in front of my mum or talking about recto-vaginal things with boyfriend! I decided to go with boyfriend as he has to live with me, and understand me, and he's a scientist so if I don't understand what the doctor says he can explain it to me in simpler terms! I'll ensure I make notes too - thanks for that advice!

I've also just got an information pack from the Endometiosis UK website - I could have done with that after my first tests! So thank you for your guidance! The UCLH website was really useful too, so thanks YellowRose!

Synnova96, did you have exploratory laps or did you have the endo removed? I've read that it can be a serious operation because of the location? I think I've been reading too much, and thinking and expecting the worst! Good luck at your appointment on Thursday!

Hi Catswhiskas, I've heard great things about UCLH, so I'm very pleased to be going there! I was offered to be refereed somewhere else so the appointment would be quicker, but I thought it would be worth the wait if they're one of the best places! I hope you recover really quickly!

xx

[endo_star]

Hi Vix. I'm being treated at UCLH too and had my first appointment in February. I've written all about it on my blog endostar.co.uk/my-appointment/ This will give you an idea of what happens at the appointment I've also written a post on questions to ask at your first appointment endostar.co.uk/gynae-appoin... Hope this helps x

[Vix06 in reply to endo_star]

Hi Doodah,

Thanks for those lists! I've gone through them all and made notes and have everything ready to go in with! That was really helpful!

I'm heading off to my appointment soon, and I'm getting really nervous!!

Thank you for your help though x

[endo_star in reply to Vix06]

No problem! Please let us know how you get on x

[Juleyanne]

One definite question I would ask is what adhesion (scar tissue) barrier they use and how they intend to proceed to minimalize the risk of post op adhesions. ie gentle handling of organs, avoiding drying out organs etc. The NHS does use an adhesion barrier but a specialist endo gyne who is involved in teaching other surgeons indicated that there is a 'new' more effective one on the market but as yet NHS does not use this new one due to cost! I would ask for reassurance that the one they use is efficient in light of a new one available.