Подтвердите e-mail

Для публикаций, комментариев, реакций и сообщений подтвердите адрес.

←

Публикация

madeline odent

One thing i think we need to be clear on is that the “nine years” is almost entirely getting Drs to take us seriously. These tests need to be cheap and easily available enough that Drs are incentivised to use them very widely, or else the actual issue will continue.

Ada Palmer

Endometriosis takes nine years to diagnose. That’s about to change. NICE has approved two tests: a saliva test reading microRNA markers, and a gut-sensor test returning results in 45 minutes, sparing women the keyhole surgery currently needed. buff.ly/QX3jHk8 #ShareGoodNewsToo

Обсуждение

7 прямых ответов · 21 сообщений

J
Jenna of the Library

I found a gyno who listens and takes me seriously. I told my husband if she ever leaves the practice I will follow her wherever she goes. I left my yearly check up and told my husband if she moves away we will move with her.

madeline odent

Now I’m cautiously optimistic here, i really am, but this isn’t like “nine years for surgery and lab results vs 45 min swab” In both cases, the first step is getting a dr to request the test, and that is the deeply variable element

Ответ для madeline odent
madeline odent

Oxford is an internationally acclaimed endo care centre and the current wait, after you get referred by a GP- and THAT is hella variable- is still like twenty weeks. For an initial assessment

Ответ для madeline odent
madeline odent

I’ve shown signs of endo since i was eleven and i got diagnosed at 32 by complete fluke after i presented with suspected appendicitis, they operated, the surgeon recognised what he was looking at and paged in the endo team. That is 21 years of drs not referring me.

Ответ для madeline odent
madeline odent

That 45 minutes still would have had at least 21 years in front of it.

Ответ для madeline odent
Dr Sophie Michell

I got diagnosed ON SCAN because my ovary was stuck to my bowel and the gynae was still like “wellllll we need to do surgery to be sure”

Ответ для madeline odent
madeline odent

my current gp is excellent and i do believe she would have referred me even if the appendix thing hadn’t happened All doctors should be more like her

Ответ для madeline odent
Hugin

What I'm hoping is that within a few years, the saliva test is something you can buy OTC at a pharmacy, send off to a service, and get results back. There's still the "diagnose yourself" and "convince a Dr that the OTC test is valid" hurdles, but it skips some of the hurdles.

Ответ для Hugin
Liz (short for Rebecca)

Or at the very least, a doctor is going to be much more willing to order a simple lab test with clear results than laparoscopic surgery.

Ответ для madeline odent
Claire Titley

I was diagnosed because they thought it was cancer. It wasn’t, it was stage 4 endo and adeno. I am thankful for the exhausted locum who put me on the two week pathway. Several surgeries later, I’m ok. Diagnosis is rubbish, but also treatment is rubbish, long term management is rubbish.

Ответ для madeline odent
Fraser Picken

Might suggest this to my partner. Got a mortgage but we couldn’t get life insurance because she was awaiting diagnosis and they won’t even consider you if you’re awaiting one

Ответ для madeline odent
Sasha

I have flagged endo symptoms in multiple teens and I am strictly a feelings doctor. Medical doctors need to step it up!

Ответ для madeline odent
Mockingbird, MPH, CHES

JFC, I’m 53, and exist because the NHS did exploratory surgery on my mom to figure out why she couldn’t get pregnant, and found “scar tissue from getting her appendix out.” ie, endometriosis. They cleared it out and she got pregnant, once. You’d think it would get better in over 50 years ffs.

Ответ для madeline odent
KMG

The surgeon doing my fibroid hysterectomy is *excited* to look for other things that need removal- appendix/gall bladder etc because I brought up gastro issues, and he brought up checking for endo on his own! Maybe he just likes playing with his robot, maybe he’s actually excited about his job 🤷🏽‍♀️

Ответ для KMG
KMG

I just rarely come across a doctor that is proactive and enthusiastic.

Ответ для madeline odent
Steffi, Goddess of Thunder

I am 36 now, have been having my menstruation for 23 years. Of all those 23 years I suffered under heavy bleeding and pain and other problems. I've only gotten a gynaecologist who finally took this serious and requested more tests to diagnose endo two weeks ago. 23 YEARS.

octopodiformes

Yes to all of this And also even once you have the diagnosis, the treatment options and getting access to them are a problem. It's layers and layers of ignorance and barriers on the medical side

🌿Fern🌿

Had to argue symptoms with my Dr because she was hesitant to refer me to a Gynaecologist even though my sister had already been diagnosed I finally had laparoscopic surgery & Surgeon dramatically “You. Have. Endometriosis” No shit, Sherlock Then après kids took way too long to get hysterectomy

Dayna EM Craig

This also solves the problem of when you are assumed to have endometriosis and no one will refer you for other investigations until you've had an exploratory laparoscopy to confirm that you don't - which can still take years to get to the top of the list for.

Bennet 🏳️‍🌈

Exactly. I had terrible pain and heavy periods since I was a teen, regularly needing a day or two off school/work because of it. Finally diagnosed at 31 and had surgery to remove it (and other things besides). I was told for years it was just normal and I had to get used to it. 🙄

Helen Rottier

Call to make an appointment, see the doctor a week or month or six months later. Tell them you are in horrible pain, so they will tell you it’s normal. Think you are crazy for a month, a year, or more. Repeat. Get referred to a specialist. See them in six months.