Endometriosis UK
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How long did it take everyone to get diagnosed?

Hi ladies, I am just looking to see how long it took people to get diagnosed with endo, or if anyone is still trying to get their voice heard like me

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Hey I have had problems since my periods started. Since twenty two I have been in and out of hospital appointments with endometriosis suggested. Then 2 years ago at twenty six I started having even worse symptoms and have been back and forth with gastro and gynae. I am now twenty eight and they have pretty much diagnosed it via elimination and scan but still not had lapro. Think it is really hard as so many symptoms cross over with gastro symptoms( though the last person I saw tried to claim this was untrue!) and there is just not a good understanding of it.

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I have had the same sort of thing, I am 19 and have been suffering since I started my periods. Everyone doctor and gynae doctors that I have seen have suggested its endo and I'm constantly in and out of hospital. I have basically been told until it gets worse they don't want to operate or really do anything in that matter. I understand that they don't want to operate but I just feel left on my own suffering. I am on the waiting list for the mirena coil and I am on the pill qlaira. Just feel like its a never ending circle. My mum had endo and it took 8 years to diagnose. I'm just trying to look for things that help the pain and some people to talk to that understand what I am going through.

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I understand and as it's so internalised as a pain it's really hard to explain to others. I also think there is a severe lack of understanding. I have tried the pill, try cycling and six monthly back to back but it stopped working. I had the mirena fitted in may and for the first time in ages felt vaguely normal - couldn't believe the difference. Unfortunately I have just had couple of bad weeks so it does still happen but that's a good step forward for you. What sort of symptoms do you get?

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Also would recommend yoga for pain management. Being a runner I was always super anti but now swear by it.

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My symptoms are:

Painful periods

Painful internal examinations

Painful sex

Tiredness

Painful bowel movements

Heavy periods

Back pain

Pelvic pain

Ibs symptoms but was tested for that and I don't have it apparently that is a common symptom of endo.

The list goes on, I will definitely try yoga, and I am just trying to stay positive about the whole situation.

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That all sounds super familiar And it is incredibly wearing. Same with internal examinations though one make doctor didn't see that as weird that a smear makes me want to ce. I have tried all sorts like reflexology to yoga and def recommend it. I think the breathing helps to ease pain. I also make most of my own good from scratch, even cereal bars to cut out artificial rubbish that is in everything and I think this helps somewhat to control it as much as it can be controlled.

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Should say food

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Yeah I'm going to try that too! Thank you so much for the advice, it's so nice to know I'm not alone

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Have a look on the home page for the forum - on the right hand side is the word POLLS, click on that and then click Browse all and you'll see a recent poll asking the same questions.

How long it took - average is currently 7 years in the UK- though many of us are in the over 20 years category.

Also there are polls on how old you were when you 1st became aware something wasn't 'normal'.

The polls are very useful in getting an wide ranging picture of other ladys' experiences on the forum.

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8 years and I only got diagnosed when I gave up and went private. One doctor even told me "sex is supposed to hurt for some people, you just have to live with it".

Don't take no for an answer. By the time I got taken seriously I could barely leave my flat I was in so much pain constantly and had crippling depression as a result. Don't let it get that far, insist on a gynae referral!

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7 years from daily pain to diagnosis. Before that I just had weird symptoms we chalked up to my "hormones" because the Dr.'s didn't put 2 and 2 together.

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Hi there I was diagnosed with endo at the age of 19, after suffering for 5 years. I was told to have a hysterectomy. I used to be in constant pain, I was told I had ibs and urine infections. I then had a laparoscopy when I was 19 and was put on the pill for the pain for over a year, so I had no period. As my periods were heavy and painful but regular. at the age of 21 I stopped the pill, as I was scared it would effect my fertility in the future. So the pain came back. I tried several medications, ayurvedic medicine being one. So helped me along side a strict diet. I am now 27 and married, and have been fine for the last year. But just over the last two weeks the pain has come back and I am finding it so hard. Painkillers don't seem to be working.

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Hi there I was diagnosed with endo at the age of 19, after suffering for 5 years. I was told to have a hysterectomy. I used to be in constant pain, I was told I had ibs and urine infections. I then had a laparoscopy when I was 19 and was put on the pill for the pain for over a year, so I had no period. As my periods were heavy and painful but regular. at the age of 21 I stopped the pill, as I was scared it would effect my fertility in the future. So the pain came back. I tried several medications, ayurvedic medicine being one. So helped me along side a strict diet. I am now 27 and married, and have been fine for the last year. But just over the last two weeks the pain has come back and I am finding it so hard. Painkillers don't seem to be working.

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HI, I reckon about 30 years! Has extremely painful periods from the age of about 13, prescribed painkillers, put on the Pill, had internal exams - all 'normal', told I had IBS at one point, kept asking GPs for stronger period painkillers - told there werent any and to alternate paracetomol and ibuprofen. Pains continued outside periods - treated for urinary tract infections again and again, even if urine test was clear. Pushed for further investigations - scanned for kidney stones - nothing, then sonographer checked ovaires "just in case" and found cysts. Had internal ultrasounds - told cysts were resolving. Pain still there a year later - GP told me 'cysts resolved' and wasnt going to refer me on so I had to insist on seeing a gynae. She put me on Prostap without a diagnosis - as this stopped pain, she said it was "probably endo" By now I wanted a definite diagnosis so pushed for a lap, in February, when I was finally diagnosed with Stage 4 Endo and relieved to have it confrimed that it wasnt all in my head!

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Hiya. Well I started my periods aged 9/10 and suffered tremendously since day 1. Gp put me on co-codamol at 10 yrs old and needed 3 or 4 days off from school each month min. Needed a whole week but I would convince my parents I was ok so cld get back 2 school!! I suffered so much for all the time. Apart from either when I was on BCP for a yr or 2 when I was 18-20, a depo-provera inj course for 2 yrs aged 22-24, and a few times from age 12 til 27 when I was hospitilized with anorexia and my low weight made my periods stopped. Im now 35, diagnosed at long last Mar last yr at age 34. The amount of dense adhesions sticking my bowel, ovary, uterus etc together and filling my pelvic cavity, a peritoneal inclusion cyst and obvs with endo leasions made the Dr assume I have suffered with endo related issues since word go at age 9/10. So, only took 24/5 yrs of hell to get diagnosed....haha. next op beginning of Sept....here we go again! Found out my Aunt, my dads sister, had endometriosis, but she was given a hysterectomy back then. Only 17. She is 53 now. So sad. At least I know theres a gene connection somewhere tho.

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I was one of the lucky ones! I first went to see my GP last summer - July/August time, and had a diagnostic lap in May, so around 10minths for me, although I know a few years can be normal for many.

I hope you get you're diagnosis soon, all the best xxx

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Hi! I was officially diagnosed last friday (1st of august) via a laparoscopy. However it has taken 7 years. I first started having the pains a year after my period started; so since I was 12. It was really difficult to get doctors to take me seriously and out of the 7/8 gynaecologists I saw, only 1 believed I had endometriosis (despite my symptoms and raised ca125 levels and a scan showing a large cyst). Over the years I have visited my GP and A&E possibly close to a hundred times because of the pain and it is only in the last 9 months that they have looked into the possibility of endometriosis and diagnosed me following my laparoscopy which showed adhesions on my ovaries and bowel as well as a chocolate cyst. Very stressful journey!

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Ha, my problems started to get bad around aged 19 and I have literally just last weekend been diagnosed aged 35!!!!! Despite repeatedly going to the doctor and asking for help. 2 years ago was really bad, they gave me scan like you do a pregnant lady, saw nothing and said oh well we tried to diagnose you, you must be ok, there is nothing there! I am asking myself, why did they not book me in for the trans vaginal scan before or book the laparoscomy as that's the only way to diagnose this.

It was only when I added to my list of symptoms 'pain during sex' that they jumped to attention and actually did something! I'm angry and upset about this and worrying the damage of growth of endo may be done already and I might not be properly fertile any more :(

PLEASE TELL YOUR DOCTOR you want the trans vaginal and then the laproscomy done, I wish I had.

ASK why they are not acting on your problems, its their job.

How's things now?

x

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I had never even heard about endo untill I got diagnosed. They had to remove a cyst from my ovaries and during the opp it obviousely got noticed. I didn't even read much into it as I jsut wanted to get out of hospital etc. (hate doctors).

The symptomes I have had since my first ever period. Very heavy, painfull... Last year I kept promissing myself to do something about it as I could not live with the pain anymore. So in may I went to the GP's... they just gave me painkillers, oh, and a scan I had to wait 2 months for and on which they saw nothing. Since the doctor has even said; direct quote: 'There is nothing to see on the scan, it can just go away sometimes.' ... read does not even believe I have it even though I was diagnosed years ago. Way to kick my already zerro trust in doctors even further down the drain. I guess that shows how hard it must be for most to get diagnosed.

The only reasons I'm sticking with painkillers that do not really help at the moment are 1. I can not afford the time off work. 2. I do NOT want to see a doctor. 3. I am about to start trying as soon as I get married in november!

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5 years, and they took my appendix out without realising there wasn't anything wrong with it. I collapsed again 8 weeks later and they found a cyst the size of a grapefruit. Lost left ovary. I was 21, that was 1997.

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