Questions to ask Consultant

[MamaRed]

I finally had my diagnostic laparoscopy (at another hospital because my local one is so behind) last week and after saying all along that there was nothing there (after I had two ruptured ovarian cysts and having heavy bleeding and various other symptoms for four years) they found ‘severe endometriosis’ and I was told it was on my bladder which they tried to remove but I bled too much so they had to stop.

He said I would need further surgery and may require a stoma and should consider a Hysterectomy and then left the room, and then I was basically sent home and told to follow up with my local hospital to try to get added on to their local endometriosis clinic.

I have been scheduled a follow up appointment in THREE MONTHS, and endometriosis hadn’t even been mentioned before so I need to learn about it before then.

What questions should I ask the consultant when I finally get to meet them do my follow up? Any advice?!

[Daveexaggerate]

Hi, I'm glad you have some answers although I'm sure your follow up will be more useful.

I'm still trying to figure things out for myself with the endo 😅

Anyway not sure exactly what you would want to ask but the BSGE website has alot of info. Especially on their guidelines page ( found under resources in the menu)

You might find something there useful for you. I only just found it myself due to your post. I thought they must have something. So I'm going to look through it also.

Anyway hope some others on here can help also 😊

[ClaudiaGrace]

Wow this is a lot to take in for you especially after just coming out of surgery. Doesn’t sound like it was delivered particularly sensitively either which sadly is also my experience.

Things I always wanted to know were about treatment options. Drs won’t tell you about physio and nutrition but lots of people myself included have success managing it with these. They key things I would ask would be,

What medical options are there e.g deinogest which NHS didn’t even mention.

What are the success rates of the surgery you want to do? endo centres collect data so should be able to cite their own data and the wider evidence base.

It is my understanding that surgery is about symptom management not cure as this isn’t possible so if they’re not making a decision based on risk vs symptom severity I’d be concerned. A lot of them can be very trigger happy with suggesting surgery in my opinion.

Good luck with it all, I’d do some reading to inform your questions if you can.

[MamaRed in reply to ClaudiaGrace]

Thank you for taking the time to reply, so helpful ☺️

[BloomingMarvellous]

Hi,

It's a lot to process and keeping notes is a great way to keep things together as far as you can.

Notes on questions is helpful, as is supplying any consultant/medic with a list of those questions at meetings. There's no argument later saying they weren't asked either... Writing notes during consults can be hard to manage. I let them know I'll be using my phone to record the conversation so I can keep abreast of our discussion. It can get a bit fuzzy otherwise with a lot said. (It tends to keep the less helpful responses at bay too as a side bar).

For general background well researched info try Heal Endo by Katie Edmonds. She has a instagram feed under same title. @rebeccamallick too is a good source of medical information on endo treatment process . Both will help you formulate your questions for your concerns and raise your overall knowledge. Getting schooled on the current NICE treatment pathway recommendations is also important so you know what you are receiving is appropriate care because unfortunately many of us get short changed.

Be prepared for those who are 1) have a go henry's who aren't qualified to surgically treat Endo try and offer their services faster than poor old BSGE centres that are overrun...2) Those who will tell you ablation is a great option rather than excision 3) That hormones are THE whole answer 4) Pregnancy will cure it 5) It's all in your head or not that bad... Stick out for the best and expect them to deliver to their utmost capacity.

You will need to hustle, advocate for yourself and ensure you allow plenty of recovery time with surgeries. Medics seem to think we are rubber balls that bounce immediately back up once they've done their bit . We take the time we need to heal and that's often much longer.

There is light 💡 in this process but you will need to stay on it and there are enormous wait lists. Keep suocial and supported as best you can .xxx

[MamaRed in reply to BloomingMarvellous]

Thank you so much for your reply, I get so fuzzy too, and at my last appointment last year I was alone and feel I was treated awfully so recording would be a really good idea from now on👍🏻

I already have the mirena coil (which of course hasn’t helped) and have one child and can’t afford another so they can’t push the have ‘a baby that will help your symptoms!’ 🤣