How long did it take for you to be diagno... - Endometriosis UK
How long did it take for you to be diagnosed with endometriosis?
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i was misdiagnosed for many many years,think if they had only listened to me earlier it would have saved alot of pain n hassle,i know my own body!
Hey Sami,
Am with you on this, for me it was also a case of knowing my own mind!!, had been misdiagnosed with MH probs over the years & perscribed 'beta blockers', 'anti-anxiety' tablets, 'anti-depressants', as well as the (quickly becoming more familiar) 'IBS', extreme tiredness, gastro, physical aches & pains etc.
In a strange way its great to be discovering my own body & to finally have an answer that can mean i can have more control over its experiences :o)
I feel the same way. Nobody listened. IBS, abdominal migraine, trapped nerve. The best prior to being taken in to hospital was .... constipation! I was a patient at an extremely poorly run surgery, no continuity of care as there was always a locum on. Just appalling! I have now moved on from that surgery! X
I am the same as you sami, took 15 years for me to be diagnosed. I got fobbed off too many times. I even saw a gynaecologist 5 years ago who did nothing, thankfully i'm seeing a different gynaecologist now who offically diagnosed the endo via lap, i only wished i'd seen him sooner as might be further along with treatment and have a family.
I was diagnosed with IBS and attention seeking at 14 and a half. I am 33 with a diagnoses when I was 21. If men had this therre would be a cure by now!
Loving this post x
Think you're right!! 
I had symptoms from age 16, saw my first gynae at age 22 and was told I didn't have enough symptoms to give reason for further investigations - despite my mum and my aunt having very severe endo and bowel resections. I saw another gynae at age 25 and was told I probably didn't have it but sent for a trans-vaginal ultrasound where, to their great surprise, they discovered I had very severe, deep infiltrating endo, subsequently confirmed by a laparoscopy - which was converted to laparotomy half way through and I was given an unplanned bowel resection. My mum has since written to the first gynae to let him know!
i have been suffering since i was 16, and its taken 6 years to diagnose me!! THIS NEEDS TO CHANGE! we dont want other women and girls to suffer like we did!!! The pain is excruciating and really effects day to day life! It needs to be taken way more seriously!!!
I have always suffered with painful and heavy periods since the age of 11 but thought that was normal as my mum was the same. I didn't really start to think there was something wrong until christmas 2010 when the bad pain started. I am very fortunate I have 2 children but I did have 3 miscarriages inbetween but I was just told that I was fine. I kept constantly pestering my doctor, the day I couldn't walk due to pain, I got a referal. So really 11 months from the start to getting a lap was very good. All I can say is keep pestering your doctor he will soon get sick of seeing you!!! It was actually the nurse practioner that first approached the subject.
No one believed I was ill. I was diagnosed as work truant by my colleagues.
I am shaking my head as I read this (in support of you)! I went through similar things. My boss used to mark when she thought I should be 'due' on her calendar because she insisted I was lying. I would drag myself to work to prove myself and end up collapsing on the train on the way there/home etc...
The psychological affects remain long after the diagnosis has been made.
i was quite lucky i was rushed into hospital with chronic pain they actually thought it was my appendix and they rushed me into theater that night and when i came out the had told me it was endometriosis but i have suffered horrible pains since i was 15 and started my periods but i thought nothing of it.
Hi Trisha,
This was the exact way i was diagnosed (10 weeks ago). It was such a scary experience & i initially didnt want to worry any family/friends so spent a lot of time in the surgical ward (waiting for a Gynae Consultant to do the necessary physical examination in the surgical bay - no dignity preserved there!!). I am thinking about how to bring this to GP's (and or healthboards) attention to avoid other women having to go through the years of painful periods/IBS/muscle&joint pain/allergies/intolerance/fainting/misdiagnosis/stress and worry that we've felt over the years. Have you or anyone else any suggestions - I am not usually one to complain, however i feel really let down and very strongly that this has been unfair - not only to myself but to my closest family, friends and partners, who over the years have witnessed this suffering. Sorry ended up on a bit of a rant there!!.
ive suffered since 13 got told i had ibs kidney infections allergies to dairy all sorts took until i was 21 to diagnose only because my boss at the time told me i had endo and had they looked for it (worked in a nursing home) im very lucky to have 3 beautiful children after being told id never have them
ive suffered since 13 got told i had ibs kidney infections allergies to dairy all sorts took until i was 21 to diagnose only because my boss at the time told me i had endo and had they looked for it (worked in a nursing home) im very lucky to have 3 beautiful children after being told id never have them
From the age of 4 i would have bad belly pains every month and have time off school. Started my periods when i was 11 and to me, bleeding heavily, being sick and in pain, having headaches and time off school was normal. When i was 18 i had a lap to remove 'chocolate' cysts from my ovaries. When i was 25 i fell pregnant but after weeks of blood tests and being told i was miscarrying, i was eventually told that i was 3 months gone, i was having an ectopic, would have to have my tube removed and i also had endo. Wasn't offered any help after that. Had two more laps to remove cysts and endo. I'm 27 now and in september 2011 i was given a jab to put me through the menopause. YAY! Pain free and really liking it. Told my gp that i would like children and after that i would like a permanent solution to the pain. She advised me to have children very close together and they won't perform a hysterectomy as i am too young. So, 13 years later, I am free of pain for a while
As I had always suffered pain and illness during my periods, I didn't know it was abnormal! My sisters and mother all had heavy periods aswell. So I didn't complain... But when my mother had a hysterectomy and the family history of endometriosis was discovered I went straight to the doctors, saw the same gynaecologist, and had a laparoscopy almost immediately.
I am curious as to whether this disease is determined pre-birth. I was born with a congenital abnormality; mullerian duct abnormality causing lumbar scoliosis and a right sided unicornate uterus (absent left tube and atrophied left ovary). I had a hernia on my left side where the left ovary slipped down and had an operation at 5 months old to mend the muscle wall.
I have always had horrendously painful periods since they started when I was 13 and 1/2 and the doctor prescribed me ponstan and co-codomol and had to take days off school during my period. I went on the pill at age 16 and was on and off the pill until the age of 25, which seemed to give me normal and mildly painful periods.
However, since taking myself off the pill from age 25 and not being on it since, endometrial tissue developed in my right ovary and pouch of douglas. This was diagnosed though a laparoscopy in May 2011. I am looking back now and remembering that when I was 10 - 11 years old for around a year I had a terrible pain in my lower abdomen after doing a number 2. I had to lie down on my front for 20 minutes to wait for the pain to subside and looking back, I think that problems caused by endometrial tissue may have been lurking as early on as the age 10. Maybe something goes wrong during foetal development and the cells get muddled from where they are supposed to be causing this horrible disease...
I have suffered with my periods ever since I started from the age of 13, I didn't like complaining because every girl goes through it and I thought that the pain was normal. My PE teachers thought I was lazy, on a good day I loved it but on the bad days, I tried my utmost not to do too much, anything as little as bending over to pick a ball up would hurt and risk a leak!
I finally had enough when I checked my diary after my third period in one month, booked an appointment at the doctors, she sent me for an ultra sound which didn't show anything clear so she referred me to a gyny, where I was booked in for a lapo 2 weeks later. He found I had Endometriosis (I didn't stop bleeding for a full month after the lap and had a bad reaction to the morphine - never had an op so didn't know I was allergic).
I am now 25 and a year after the lap I'm still trying to find a solution for the pain. I have been on nearly all contraceptive pills, at the moment I have just had my second injection of Zoladex (brings on a mini menopause - only for upto 6 months, just for a break), which has thankfully stopped the bleeding for now, no change to the pain though. It has been good - since a year ago I was bleeding every other week. Although, now I feel like I could explode with the pressure! Oh well, I just keep thinking positive - something will soon work for me as everyone is different.
Don't Worry, Be Happy!
I was quite poorly really, first off i had to have an emergency appendectomy, then a few months later i had an ectopic pregnancy.. it was only during a laparoscopy for this ectopic was it discovered i have stage 4 endometriosis. So for me it was a surprise diagnosis. I just believed the pain i was experiencing was normal and put up with it. Didn't actually realise all my internal organs were fused together and had to have lots of surgeries ( 7 ) before i could even attempt IVF for my babies. x
Periods started at 14 hemorrhaged first time then awful awful pain and heavy bleeding every month. Would have chronic constipation for week before and then when period started chronic diarrhoea got referred to first gyne at 15 got told it would all get better when I had children. Spent majority of teens on and off OCC mefenamic acid and OTC painkillers had 3 hospital stays because of accute abdominal pain got told constipation, wind, ibs or UTI. Finally rereffered to gyne had inumerable ultrasounds etc got treated as suspected endo had mirina fitted lasted 3 months with worst pain imaginable got removed then put on norethisterone bled through that then in August 08 collapsed at work with abdominal pain rhs they kept saying appendix got taken down came too up on the ward and they said it was an endometrioma that had burst. Gyne would not accept the surgeons word for it finally had my lap and diathermy in march 09 grade 3 endo with patches on bladder and bowel have been on prostap ever since I was 30
16 YEARS FOR A DIAGNOSIS
Hi, I am new here I was diagnosed 6 month ago. But for the last 5 years I was in lots of pain. I had my lap last month and I am feeling great. I had my lap done in Poland. And the doctor gave me a fantastic tablets for endo, the polish name is visanne, but I checked and in the UK is under visabelle.
Honestly it is a great medication, I am not feeling down, no headache. And the most important no pain!!!!!
I am just finding out about if this medication is available in the UK if yes? Ask your gyny about it.
Good luck girls, all the best in the New Year!!!!!
We can do it!!!!!
Lots of sad stories... I too had horrendous periods having to spend a day or two in bed each month doubled up in pain. I too was told perfectly normal and it would get better once I'd had a baby (not what you want to hear age 14)
Suffered with unexplained abdominal pain all my life and awful tiredness etc but was made to feel by several doctors like I was making a fuss about nothing. I was told I'm probably stressed and to go and listen to sea sounds to relax me by one... arrrrrrrhhhh! No one ever sugested endo until.... I was 39!!!!!!!
Finally a new doctor sent me for further tests and laparoscopy I was diagnosed with severe endo and after trying every thing they threw at me I'm having a radical hysterectomy etc..in a weeks time. I know i have a long road ahead and may well not be rid of this chronnic disease but there is light at the end of the tunnel and I'm hoping to be pain free by spring!
ps I'm lucky enough to have a beautiful 10yr old daughter whom I love to bits, I may not have the brood of children I dreamed of having but she makes life worth living and makes me smile every day : )))
I had pain for many years, which I thought was normal period pain for me I was in a lot of pain one February Friday evening and couldn't sleep due to it - Got out of bed and downstairs, colapsed, got up then blacked out took a fit - thankfully friend had stayed night to help spent whole day in ICU, few months of investigation until diagnosed with cyst - only when got removed 5 months later found another cyst and endo - Almost pain free now and I had 2 children prior to this and knew nothing for years
My period started when I just turned 11 the pain started on that day too, I used to pass out and be sick every single month . I rarely pass out nowadays but the pain has spread over more days instead of the intence one day. II was diagnosed with pcos and IBS when i was about 21 but it has taken 27 years to diagnose the Endo after a lap when I was 38. Endometriosis had never been mentioned to be by any doctors or my endocrinologist despite the pain and I always had regular periods. I have a chocolate cyst on right ovary which returned shortly after being removed also adhesions on my pelvic wall. I'm currently coming to the end of my second IVF treatment and praying this time it will be something positive........so difficult to keep picking yourself up after each hurdle.
hey wishingwaves, i too get these chocolate cysts which are quite large on scans but disappear when im opened up for surgery!!! its my right ovary too - my left side had not been affected at all which i find strange x
I too have a chocolate cyst on my right ovary. left ovary cant even be seen due to adhesions covering it all up.
Im due to start IVF in two weeks but was worried that they will not do it due to the cyst. So you saying you have one gives me hope. Can they still collect eggs with a cyst? Advice much appreciated. xxx
Hi, Ladies!
I have had a few 'gynae' problems. Had to have my 2 children via c-section, not a choice I would have made personally!! 18 months after my youngest I had my appendix removed.
7 years ago I had bloods done that were all out of sorts with white cells & red cells out of normal range. I was sent for gynae scans and told nothing was there, no endo! (My mum had to have a hysterectomy due to severe endo 11 years ago).
I was informed that my white cells were out due to mild neutropenia (!?!!) and put on iron tablets for the red cell deficiency!
2 years ago I had an umbilical hernia op, 18 months after that, another operation as I had a lump near my section scar, and was told it was a hernia. I came round to be informed it was not a hernia, but was infact external endometriosis, outside the womb.
October 2011, I should have had a full hysterectomy, but the gynae only managed to remove my right ovary with 12cm cyst. Could not perform the rest of the operation due to endo being so bad. She could not see my left ovary, it had spread to the pouch of douglas, and risked damaging my bowel and bladder if she carried on.
I now feel that I have been left in a Prostap limbo, they have discharged me from the gynae clinic and said they can do no more for me, and expect me to go on the pill with no break for the rest of my fertile time! I am 39!!!
Anyone have any ideas? I'm dreading another op, but think I shall go for a second opinion, with a braver gynaecologist! I feel it's the only way out of this mess!
Technically it took me less than a year but I had all the same symptoms since I was 14 so I am coming up to 21 this is the reason why I voted 6-7 years.
from the age of 17 i was sent home from the doctors feeling like a drama queen, all women get like this, the pain cant be that extreme and so on. finally after seeing almost every doctor in the surgery both male and female a locum arrived and was the answer to my prayers!! she refered me to gynae and i was seen within 12 weeks and 12 weeks after that i had my first laparoscopy at the age of 25. i feel that had i had treatment sooner then endo wouldnt have had the chance to control my youth and ruin my future with fertility problems
I went to the doctors with the same symptoms at 17yrs old...15yrs later at 32 years old I finally happened to be registered with a GP with a gynaecological background and she's been really supportive and pushed for my op and diagnosis. 17yrs with no support and feeling like I just had 'bad periods'. I've found intercourse painful since I first experienced it. I'm sad that it didn't need to be like this. Now I'm scared I'll never have children.
I was told i have so many things b4, i even got told by my uni i was lazy and lying about morning sickness and pain. I went though hell with work and uni for years b4 i was diagnosed. I was only finally diagnosed after surgery to fix an assault before that only scans were offered never did anyone offer me a lap to see wot was going on.
It took 34 years to diagnose my endometriosis.
Reading these comments, I feel very angry with many medical professionals who don't seem to take women seriously, or don't refer people to specialists for further investigations.
Iv been lucky, although I'm going for my laposcopy at the end of this month for my diagnosis,I only went to my doctors two months ago with my problems.
One of my doctors diagnosed ibs and I wasn't happy,knowing this was wrong I
went back and was seen by a different doctored who refered me to the hospital. No one has given me any advise or answers though and was very surprised when I came across this site and realised how common and debilitating this condition is. I'm a bit scared of what my future holds.
I had my first lung collapse at the age of 25. 9 years later and an 80% right lung collapse, I was finally diagnosed with Catamenial Pneumothorax due to Endometriosis after 5 and a 1/2 hour long Video Assisted Thoracic Surgery (VATS). Being on the pill on and off did not help as it masked the symptoms and threw GPs and specialists off the trail.
Now the challenge is to manage the condition and my new lung function. It is nearly four years post surgery and the lung has stayed up. Mind you, it is stapled to my chest wall! I have tried hormonal treatments, but the side effects are not worth the bother.
So I am currently using herbal remedies and a really healthy diet (apart from when ice cream is on the scene!) to manage things.
i startd with endo wen i was 13 but didnt find out wat it was until i was 18 cause i was young they put it down to getting used to periods they sed that cause it took so long to find out i had this they will never get rid xx
After being fobbed off for many years to just take pain killers for painfull periods and trying for a baby for 5 years I was offered a lap because they could find no evidence that I was ovulating. My tubes were clear but they found I have late stage 4 endo. I've just had a laparoscopy to unstick my left ovary and fallopian tube from my bowel amd also have a bowel repair. I wish they would have refered me 15 years ago because I have suffered since my first ever period. Gp's are a waste of space.
I don't know how long I've had it if I'm honest, I've suffered bad periods and pains for years, but since going to the doctors it took about year, which isn't my problem. its all the doctors that kept saying I was fine. if it wasn't the last one I still wouldn't know.
I got finally diagnosed at 37, I've suffered ever since I've had my periods. I was on the pill from 19-31 but still took a day off work a month most months. I wish I'd been diagnosed much earlier. 24 years to be diagnosed? Partly fobbed off by various GPs, partly me just getting on with life.
I find this an odd question to answer as without diagnosis who knows how long you had it? You can guess if you have had pain and terrible periods but that doesnt mean you had endo for all that time.
Well over 10 years. All these years of investigations and chronic pain bowel problems, pelvic pinching due to adhesions, frequent urination, continual piles often bleeding, body ache and stiffness and low back pain, hip pain and anxiety and depression worsened by this nightmare.
Even when biopsy picked it up years ago, just got a 3 line letter. I had no idea what hell that diagnosis mean't for me downline! Several ops later and injections in stomach, ultrasounds, Ct scans you name it, all have been tried and it came back. Now in menopause they think it might be adhesions adhering other organs, bowel and into stomach. I live on the loo, either constipated or diarreoh and sometimes both and often suddenly (had a few accidents) plus frequent embarrassing gas and bloating. None of my clothes fit, I had to buy baggy larger sizes as can't bear anything remotely tight around my waist. Hysterectomy (radical) has been suggested with maybe bowel ressection but too petrified through bad experiences and pain with previous ops. Reclusive now and do not desire to rejoin with the world right now. So fatigued all the time. This wrecks any chance of meeting anyone, it takes your confidence as you fear missing the loo in public or releasing painful gas and most of all, you get tired of your own voice moaning about your pain. Sitting hurts, bending hurts and you worry what you eat might spark a flare up all the pain. If you overdo it you pay, fatigue and pain which often pain relief fails to fix. Been told IBS for years then they discovered extensive endo, adhesions with tube stump removed stuck to ovary one side and bowel the other and in and around belly button. The fear of having a flare up and not being reliable in a job is terrifying. Until this condition and it's effects on someone's life is considered, going to get treatment remains at a minimum frustrating at a maximum terrifying as endo surgery is rarely reduced to a one off laparoscopy or hysteroscopy and adhesions go hand in hand with endo and tend to worsen with each operation. I often leave things undone as i am in too much pain to do it
and then get down that I live in a less than tidy flat and have to quickly get things done between flare ups,
Took 17 years for various docs to figure it out, most said it was IBS, another said a grumbling appendix. I suggested endo a few times, all docs said I had all the wrong syptoms, after a final year of bombarding them I had a lap and surprise surprise they found endo!!!
Oh dear ! Feel good to know I'm not alone. I started my period at age 14 and pain was so bad monthly. But I was used to seeing my mum and big sister wriggle in excruciating pain during their periods so I thought it was normal. And bleeding was also heavy. I got married at age 29 and started having stabbing pains just 2 weeks after wedding only to be diagnosed with right ovarian cysts. Had an op to drain the chocolate cysts and was told I may never have children as my tubes where distorted. I was placed on clomid after trying for baby for 3 years, got pregnant after a month of clomid treatment, had threatened abortion at 6 weeks gone but baby went through. Very lucky to have her at 7.5 months as I had ruptured membrane. I was only pain free when I was breast feeding which I did for 1 year and 2 months, didn't wish to stop due to my freedom from pains. Painful periods and painful ovulation returned when I stopped breast feeding. Ovarian cysts returned at age 36, a year later, I had my 1st Lap to diagnose what was wrong as scan was giving false diagnosis and Alas I was finally diagnosed of endometriosis. From age 14 - age 37 (23 years of blind suffering). I'm now 42 and pains are worse with spasm happening almost every 4 hrs. Living on menefamic acid to relieve my pains, now waiting for another referral to gynaecologist as I now have multiple large fibroids, So depressing. All I do now is pray everyday to God to exempt my daughter from the hereditary scourge and also keep me alive to support her as she grows to become a woman.
Amen.
I was diagnosed at age 37. Looking back, my symptons started when I was 14 so it took around 23 years for me to be diagnosed. I was finally diagnosed when my GP noticed something unusual during a pelvic examination and referred me for a scan.
I must point out that this was picked up while I was living in Bermuda and not by the NHS who had fobbed me off over the years and never took the time to investigate!
Too long!
I went to the Drs with heavy periods that were unbearably painful in 2011. I also suffered with constipation and diarrhoea. My GP referred me to the gastro team. I then underwent every test imaginable to rule out something sinister in my stomach and bowels. It was invasive and horrible. All the time the pain was getting worse and after the tests were over (over a year later) I was left feeling no better with a diagnoses of IBS.
I decided to do my own research to see what was wrong with me as it had become apparent that my symptoms were worse when I was due on. That's when I found out about endo. I spoke to my GP who referred me to gynae who told me after an examination that it was most likely a pulled muscle and IBS and to take ibuprofen. I refused to accept it and he told me that I could elect to have a lap but they probably wouldn't find anything. Four months later I had surgery and lo and behold there it was! Loads of it!
After the op I was put on cerazette to limit the chances of it coming back. Well now four years later and it is back...lets see how long it takes to get the proper treatment this time!
Six years...
This is 15 years ago. When I talked to the gp about it, she (!) said I'm a woman and I have to live with it. After years of pain, on and off the pill, thinking that's causing the pain, other symptoms occured. I had stool problems; I could not go to the toilet.
I tried herbal teas etc. A week not going was normal, even longer.
2 weeks out of a month I was in pain and I had difficulty sleepig; I sat on the toilet with my feet on toiletrolls trying to ease the pain. I saw flashlights because of the pain, i felt sick, had to throw up, I had the feeling I was going to faint. Breathe deeply was helping a bit.
I tried different gp's and their answers were do sports, eat brown bread etc....
Now the gp gave me diazepam to sleep.
That did not work.
Another symptom I got was, I felt a lump.
I noticed that it became bigger when I tried on a diving suit that I bought 5 months
earlier. The zipper did not fit over the lump. That time the gp finally thought
something was wrong. 5 Days later I was operated by i oncologist. They thought
about cancer apparently. They found a cyst as big as a coconut, or as a five month
pregnancy (their words). And everything was stuck together, ovary, bowel etc.
The doctors were not able to get all endo out, especially from the bowels, but a lot was removed.
The treatment after the op was 2 tablets orgametril (lynestrenol) a day, total of 10 mg a day.
After a year or so, I could alternate this with yasmin. First 2 months orgametril and than 1 month yasmin. Now after more than ten years I use the yasmin more frequently than the Orgametril.
Since the operation I am almost painfree.
In all fairness I would say from the birth of my daughter 8 years, but I was experiencing problems prior to this and didn't know what it was.... So from my early 20's I have suffered and I am now 45 years young.
So is it a definitive 8 years, or from the chronic backache in my early 20's as my pouch of Douglas was completely obliterated by endo..... I would say a good 22 years personally.....!!
