How long did it take you to get diagnosed... - Endometriosis UK
How long did it take you to get diagnosed with endometriosis from onset of symptoms to confirmed diagnosis?
JaneHJ_CEO499 VotersPlease select one:
20 years
There should be a 10+ years, 15+ Years and 20+ years response as that is how long it takes for some women. For me, it was 17 years
I voted 2-3year - Took just under 3yr cos first 2and half yrs only very mild occasional pain and spotting which should've had checked but didnt. Then it got very bad so saw doc then 5months later had Lap and diagnosed and removed.
It's shocking that it can take so long like maydog and Beau83 have said - many doctors don't understand about endo. My doctor told me loads of rubbish - if you have a lot of pain you should have a lot of endo, and it would've shown on the ultrasound, a lap is no good to remove endo, you haven't got endo cos I couldn't feel it through your stomach. She referred me cos I told her she was wrong but it's scary that some doctors and higher don't have a clue.
I'm actually surprised that over half took under 7 years. However, there are many who get no symptoms or who disregard symptoms for years thinking that they're normal, so it's very hard to pinpoint when symptoms started for lots of people, or to differentiate between painful "normal" periods and the start of endo symptoms.
I think age is also a factor - if your symptoms start in your teens, you're far more likely to be fobbed off than if you're over 25. It's sad that the diagnosis length has led doctors to believe that endo only really happens to women who are 30+, just because that's when most finally get a diagnosis. It would be interesting to compare length of diagnosis and age at onset of symptoms to find the correlations there.
This could indicate that diagnosis times are reducing though which is great - it's brilliant that many have stated that it was under four years, or even one year! Mine started in the days before my first period at 12 and I was finally diagnosed at 22.
I agree with you. My symptoms started when my periods started aged 13. I was diagnosed at 24 after almost monthly visits to my gp. 2 years before getting diagnosed, I asked my gp if it was possible that I had endo and he said that yes, it was possible but he put me off the idea of being referred to a gynecologist as he said that the only way to diagnose endo was through an op and if I had it there was nothing they could do about it anyway.
My gynecologist is lovely, and was so understanding when I cried in relief when he confirmed that I had endo. for years I had been made to believe that it was all in my head and that I had a low pain threshold, as many of us have been made to feel.
My endo was diagnosed by a reflexologist! Doctors excuse was it's a really expensive operation so we didn't put you forward for it. I.e laporoscopy!!!
I started my period at 14 and always had very painful and heavy periods so I thought I was one of the unlucky ones. Both my sisters had normal regular periods and I was really envious of them. I have my first lap in 9 days the gynae said she'd bet her life on me having endo. I saw my gp about 7 years ago and firstly got diagnosed as PCOS, as an ultrasound showed my ovaries covered in cysts. It took all that time to get to where I am now but that's only because my gp knew I'd rather he try everything he could first cos I didn't want to go to gynae if I didn't have to. Lets hope it's improving for the latest ladies coming through. I hope they not all as uptight as me!!
from 14 to 20 = 7 years
Thank you for all the work you do.
In addition it would be interesting to know the outcomes in relation to the number of years it took to get a diagnosis. I.e. are outcomes and quality of life after treatment(s) related to how long endometriosis has been 'allowed' to go untreated/partly treated? Would early intervention save not only a lot of suffering whilst a diagnosis is sought but also determine how successful treatment is/and/or how much treatment is needed after the diagnosis?
my doctor told me that i couldnt have endometriosis because the pain that i described didnt sound like it! had surgery last november and was diagnosed. 22 years to get diagnosed. on decapeptyl now.
i put 1 - 2 years as i felt it wasnt right after removing my fibroids about 4 months after it was removed on 2007 and diagnosed 2010..
29 years in my case from my 1st visit to the GP with agonising periods, 1 week on 1 week off which went on for many years right in to my 20s.
Got my 1st gynae ultrasound when I was 40. My 1st endo surgery at 43.
Your poll needs to be in 5 year blocks. Just stating over 7 years+ is not enough given how many had to wait so much longer than that, and 9 years was the average wait until recently.
I am so pleased for the younger generation that they (most of them) will be seen and get some treatment a lot sooner than I did, but it is still woefully tragic that so many lives are blighted for so long.
I had symptoms from age 13 got put on the pill at 17 didn't know any better I hadn't heard of endometriosis I'm 35 now and was diagnosed 3 years ago
So it took me a year from the pain for me to then have my operation. One doctor said almost straight away it was endo but did nothing about it. I had hundreds of tests done and was going to the doctors at least once a week almost every year and spent it all in tears xx
Over 15 years
20 years!! And even then the gynaecologist was reluctant to carry out the laparoscopy. Turns out it's Stage 4...Here's hoping there is an increased awareness amongst GPs now of the symptoms to watch out for...instead of prescribing Ponstan painkillers and the contraceptive pill!! I always knew there was something very wrong with me but was always told it's 'women's problems'. Finally so relieved to know the root cause...
I don't know what year I will vote I have pain since my Ist period at age of 13 since then I have bad pain 3 days in bed I have my first surgery last May 2011 my one of fallopian removed actually when my first surgery I didn't know cyst came back like endometriosis NO CURE?? last Dec.2013 I was diagnosed with 10&7 cm ovarian cysts called endometrial polyp & endometrioma I know my cysts is endometriosis because of the symptoms ...when you have endometriosis you can't explain what kind of pain super bad pain, when I have pain I cried, I want to end my life because of pain...I hope there's a cure for endometriosis I am only 29 years old I want to have a normal life...
Shocking. GPS need more education ! Can polls like these be submitted to BMF or such like as nothing will change otherwise.
For me 24 years, I started getting symptoms at 15 but was finally diagnosed at 39. Something I am very angry about. It should never have taken this long, the effect it had on my life not having a diagnosis for this long has been considerable, both physically and psychologically.
Took 11 years 5 doctors a hysterectomy and 4 other surgeries before they actually find where and what it was:/
Hi everyone
Thanks to you all for voting and leaving comments - these are invaluable! Our survey from 3 years ago showed that the average time from on-set of symptoms to diagnosis was 7.5 years. These times do not appear to have shifted much which shows how much work is still to be done.
We are intending to run new polls on this site more frequently to build up statistics and stories that we can use during the forthcoming Endometriosis Awareness Week - 3rd -9th March. We're working on our plans for this now. Also do check out the Endo UK website for more events and information - endometriosis-uk.org
Many thanks
Helen
15 years.
Feeling quiet despair. Another disappointed month. I had the laparoscopy and hysterscopy in November, still experiencing lots of pain during my monthly cycle. Feeling quiet hopeless and disappointed. My husband is encouraging me to stay positive but I know he's disappointed too. We've been married for four years and been trying for a baby ever-since. Nov 2012 I was diagnosed with polyps and already undergone a hysterscopy to have them removed. Then last year i was told about the cyst, the endometria, endometrosis and adenomyosis. In 2011 I did the colposcopy but it never worked either.
Going to see the in-laws on the weekend and I know they will still be curious as to why we have not started our family. Today I finally received the follow up appointment since my operation in November. Its for 13th Feb. I see people write about medications and I am confused as to what one would be good as the ones i receive now are not that strong and i am in so much pain.
I was 15 when they thought I had it and 19 when they finally done first lap x
Over seven years
It took me 32 years to get diagnosed. I had my lap done yesterday to confirm a presumed diagnosis. The consultant told me that I have bad endometriosis and we need to talk about what is to be done. I had been going back to different doctors over the years and getting nowhere. I did move around a lot and lived overseas so seeing different GP's did not help my cause.
This time I was in so much pain I literally had it. I wrote my own history and went to see my GP and put it under his nose. To his credit he said he thought I had endo and I saw gynaecology quickly and I was offered a lap without any arguments.
I just learned to live with this crazy shit, it is my normal. My husband noticed my decline more than I did. When it got to the point where I was spending one week out of three unable to move off the coach he was as fed up with it as I was.
Yes you read that right, 32 years. I was 12 when I started with this horror show and I was 44 last week.
22 years In that time I was told it was
Food poisoning 10+ time
Gastric bug god knows how many times
Gallbladder inflammation and they wanted to remove it
My new gp said unfortunately it takes on average 3 years to be diagnosed! He was shocked I have just had diagnosis after 9. That's why polls like this are so important esp to health care professionals!
It has been 20 years plus for me since I had obvious symptoms. I am now 46 diagnosed by a consultant in April and waiting for a laparoscopy in three weeks. I have a 6cm cyst and according to the MRI my endo is quite extensive.
My medical records are full of hormonal related problems, midcycle bleeding, bleeding after sex, pelvic pain, awful bloating, bowel problems and pain and migraine. Each time I was told it was IBS or more recently anxiety and my age!!! None of which does much for your self esteem. I even passed out in the supermarket once due to the bowel pain at the start of my period and my GP didn't think it was anything to be concerned about!
As you can tell I am still very angry about what has happened to me but the poor awareness that GP's seem to have about endometriosis is deeply worrying. Surely it is not that difficult to join the dots together. I want to join the campaign to raise awareness as I don't want to see my daughter or any women have to put up with with years and years of misdiagnosis.
Easily 20, arguably 30 years. The scale on this poll does not do the duration of our suffering justice!
Easily 20 arguably 30 years! The scale of this poll does not do the duration of our suffering justice!
7 years it took for me.
28 years
28 years
9 years for me... this post breaks my heart to see so many women suffering the same fate
30 painful years.
