How are you diagnosed with endo - Endometriosis UK

Endometriosis UK

56,264 members45,067 posts

How are you diagnosed with endo

Lucky87 profile image

Hi there I’m 33. I’ve got two children, always had terrible periods on and off I remember when I was 15 on way home school and almost past out from my period, i had to sit down as I felt really dizzy and hot. This has happened a few times over the years when I’m on my period. Always heavy, clotty etc. Recently I’ve been spotting right after ovulation and upto period. Then I’ll have normal period and I’m fine until after ovulation again. This is third month. I’ve just ovulated so I’m waiting bf for the spotting to arrive if it does!

My gp sent me for ultrasound which I had last week on Thursday, I was ovulating during this time I believe as it was around the time I ovulate.. anyway everything looked fine, nothing to mention besides fluid in one of my tubes! She asked me if I had an operations or had any problems with pelvic inflammatory disease which I haven’t and don’t! So after looking online it says something about sti which I have never had or not aware of, operations, pid, endometriosis and eptopic so I’m wondering if my thoughts all along is that I have undiagnosed endo..

Any help or anyone had same as me? Thanks

12 Replies

hi there, hope you're doing alright. the symptoms you have like heavy bleeding and nearly passing out don't sound normal. it could be endometriosis. the only way to officially diagnose endometriosis is from a diagnostic laparoscopy. although there are scans and blood tests that can be done to look for signs. i was just given an unofficial diagnosis based on me having symptoms like severe pain, my gp refuses to refer me for a laparoscopy. i want to fight back but i'm too scared. so id say you should ask to be referred for a diagnostic laparoscopy. if they refuse, ask them why they are violating NHS NICE guidelines. a lot of doctors don't take endometriosis seriously so you may have to be insistent or look for a new gp.

Hi, sorry if I’m jumping in. I read your response and the bit about wanting to fight but too scared. Is this because of op or asking GP?

yeah I meant about asking the GP. I tried to explain things to my GP and argue against what she was saying but I have social anxiety so I kind of shut down. I said that bit to explain why I didn't follow my own advice and fight back.

I’ve found it easier to tackle doctors for others than myself in the past. I’ve had some doozies with doctors to get help for others 😂It’s totally different when it’s for yourself, not to say I haven’t been blunt, but I wouldn’t recommend it 🙂. Still hard though. I’ve found it’s much easier to do the econsult, it’s written so harder to ignore, but mainly it’s just easier to write things down.

If you’ve had GP’s that ignore or fob you off it does get harder, I think most have been there. You know you can do it though 🙂 you’ve got all the info, don’t ask, tell them what you want to happen 😀

There is a book called ‘Feel the fear, but do it anyway’ I’ve not actually read it, but think of it when a boost is required 🙂

Not sure if it helps or I’m just wittering, probably the latter 😆

good on you for helping others out! 😊yeah it is really difficult when its for yourself. its really sad that so many GPs ignore people. I'll try to be more stubborn next time, i thought about saying i would report them for violating the nhs guidelines, i probably wont though. thanks for the encouragement, thats a good motto too.dont worry it does help haha

The best bogey organisation for care professions is the CQC, that can work well 🤣You’ll be fine, if you’re well prepared with paperwork, as much as possible, they’ll see you are serious, book a triple appointment so you can go through it. They will look at the pile and get you out of there as quickly as possible. 😂

Thank you! I had no idea who to complain to if it came down to it. Haha 😂

Couldn't agree more this book helped me so much after my dad passed away. And yes tell them in an assertive way. I had to tell them i believe I've had endo for years and no one has ever mentioned it to me. My Dr asked what do you want me to do. I said get me referred and it diagnosed. She rolled her eyes booked the tests in she needed to do before referral and then 6 month later i got it diagnosed. Only took 16 years but once i heard of Endo took me 7 month xx. Really good advice here. Sorry for butting in x

Sorry about your dad, it’s never easy losing someone.

Not butting in at all 🙂That’s good you got there, in a relatively short space of depending on your view point, mine was similar, took a little longer just over a year to when the effects became worse and diagnosis, only had that as I went private. I’d gone to discuss fibroids shown on a scan.

How are you feeling these days?

I'm sorry you went through that. its good you managed to get properly diagnosed though. and thankyou, I just ordered that book actually and next time I call my gp I'll try to stand up for myself. hope you're doing alright this winter xx

Hi, if you look at the endo UK website there is a symptom diary, before going back to GP write down everything you can think of symptom/pain wise. It could be endo. I ended up seeing a gynae privately, I just gave him my notes to read, historically as well as then. He diagnosed endo and, as has been said, the only way to tell is a lap. This did confirm it and a few other things such as numerous fibroids and enlarged uterus.I only had three fibroids show on ultrasound, no endo, nothing much on MRI, but more than thought originally.

Website has info about consultations as well.

Hope you get sorted soon

Anna_EndoUK profile image
Anna_EndoUKModerator

Sorry that you have all had to fight to be listened to! If your current GP isn't listening to you then ask to see another one - see if you can find one who has an interest in women's health.

Here's the link the the symptom tracker on Endometriosis UK website: endometriosis-uk.org/sites/.... Fill it in and show it to your GP, it can be really helpful to show the patterns of pain/symptoms. There are also a couple of apps you can use if you prefer to track stuff on your phone. I used to use one called 'Phendo', but I think some people also use 'Clue'.

And here's the link to the NICE guidelines: pathways.nice.org.uk/pathwa.... Your doctor should be following these guidelines if they think that you may have endometriosis.

Keep fighting until you are heard, its not ok to be passing out from pain during your period!

xxx

You may also like...