Getting a Diagnosis

Hey all,

This is my first time posting so please be forgiving.

This weekend, I’m having a chat with my Mum and we’re gonna make a decision about seeing the doctor. I’ve been having symptoms of endo since I was 19 (maybe earlier but can’t be sure) so basically two years (I’m 21). I’m happy if it’s not but I’m fairly sure it is this, as all the symptoms are there, plus my grandmother had it very severely.

I’ve had a look and it seems the laparoscopy is the best way to get it diagnosed. I’m trying to be very practical about it. So how do you have that conversation with a doctor? Or do you ask for a nurse? Do you ask for a specialist? Part of me doesn’t even know how to make the appointment (like what to say to the receptionist? Any advice would be helpful!

[Pinkybow]

Hello lovely! My only advice would be to write it all down, even about your grandmother, explain that you feel it maybe endo. It may be a long road ahead but everybody's journey is different, my Dr sent me for an ultrasound and then a gyn, and then an endo specialist. I know now the endo specialists like to do an MRI which helps massively with diagnosing many women but it's not always accurate. Then a lap if they feel you need it. But it may not go that way at all and the average time to get a diagnosis is 8 years but don't give up and be your own advocate! I hope it all goes well and you get seen to soon 💛

[BlueGiraffe9]

I initially went through my GP with all my symptoms documented, they then referred me to gynae who after an ultrasound referred me to a specialist endo centre where I had an MRI then finally a laproscopy to sort the problem out. The initial referral was Sep 21 and I had the lap last week so 1 year, 4 months.

[BlueGiraffe9 in reply to BlueGiraffe9]

And when booking appointment I think all I'd said was I was concerned with my periods.

[CryBaby91]

Are you using a period/symptom tracker to help show the doctor that your symptoms are cyclical? Just so they can get a clearer picture

[Hidden in reply to CryBaby91]

I’ve been taking a diary of it for the past year and a half.

[CryBaby91 in reply to Hidden]

Good, that's half the battle! My memory is awful so I have to write it all down or I forget as soon as I'm in front of a doctor lol. You've had some fab advice already, so I won't elaborate further as I would just be repeating what's been said. I hope you manage to get sorted!

[NW248]

MRIs are used much more now as they are not invasive. You probably need your GP to refer you to a gynae first as GPs can't usually refer for MRI directly. Try to get referred to an endo specialist, there's a list of them on the BSGE website.

How easy it is to get that stage depends on who you see, I was fobbed off for over a decade with "It's just normal period problems", "IBS", "nothing to do with gynae"(headaches, bowel problems, fatigue etc.)

I've found that no GPs or consultants want to read anything written down! If you've got a diary of symptoms put it into a calendar form, with a line of boxes for each menstrual month starting with the first day of your period. Use a colour code or icons for different symptoms.

For anything else you want to write, use bullet points and short statements rather than whole sentences.

If they refuse to look at these and tell you they want you to tell them the symptoms. Use what you have written, explain the calendar. "Day 1 to day 4 every month I have a headache, flu like symptoms, severe pain", read through the bullet points and elaborate where necessary. If they try to take you off script, point out that because you're ill you need to use the written notes to remind you of everything.

[Dee_EndoUK Moderator Endometriosis UK]

Hi Rhiannon

A really warm welcome to the forum - I'm so pleased that so many of our community have reached out to you already with support.

It's great to hear that you've already been keeping a pain and symptom diary - this will be really helpful when you see your doctor. You may also want to take a look at our 'Getting Diagnosed Information Pack' before you speak to your GP as it has lots of handy tips and information. You can download it from endometriosis-uk.org/gettin...

Wishing you all the best with your appointment and please feel free to post on here about any other question you may have x