What age did you get diagnosed with Endo?

I'm just wondering what age did you all get diagnosed with endometriosis?

I'm only 19, but I got diagnosed with endometriosis and PCOS when i was 18. It took the doctors a long time to do anything because they told me I was much too young to be suffering from it so refused to check. Did anyone else face this problem?? I'd be grateful for your replies.

Thanks

Holly xxx

21 Replies

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  • Holly, I suffered for years and doctors told me it was normal. It was only when I moved to a new town and gyni that I was fortunate enough to be treated properly. He said I would have had it from my early teens which explained the dreadful period pains and agitated legs, not to mention the lower back ache. When they removed my appendix at 11 my intestine was covered in cysts and other growths. Looking back I think it was endometriosis but it was not known that well then. You have identified you have it so make sure you get treatment, a good gyni and don't be afraid to shop around till you get one, also get onto a health insurance now before your diagnosis is official otherwise they exclude you for all female related issues (I am battling with them on that now as they won't cover me). And don't let doctors palm you off. Keep asking questions. but most impotently stay positive as your emotional state has an impact on your body too.

  • Thanks for the reply. Yeah im struggling so much at the moment to get the treatment I need. I see a different consultant every time I go to the hospital, none of which really know whats going on with me because they havent read my notes. They just keep saying 'oh you'll be fine you just need to get on with it' but im in so much pain its hard to just get over it and get on. I dont think I should have to just cope. Think i'll take your advice and have a look for a better gyni, one who will give me the treatment I need. THanks again xx

  • I was diagnosed when I was 25 but only because I had an ectopic pregnancy.

    But when I was 18 I had ovarian cysts removed and was told that there was a small chance I could have endo. They didn't offer any tests or anything. Since then I've had nothing but problems and been in chronic pain xx

    I

  • Hi, I have been diagnosed recently, aged 20. They said I was too young, I got pushed through a lot of doctors who just sent me away with pain pills and I could see them rolling their eyes at me!

    I had a surgical termination last year, which failed, and since then every month my cycles got worse and worse, now I go to the hospital almost every month to be put on morphine. Im getting put on the injections which basically give you menopause early... a friend of mine was diagnosed at 14 :S

  • I didn't get diagnosed until i was 30. I was told that the pain was just irritable bowel syndrome, or palmed off with various other things. I woke up one day in excruciating pain, vomiting and sweating profusely and my doctor was a useless waste of space. He told me i had Chlamydia even though the tests came back negative, then i was told my coil had become infected, he gave me no painkillers and didn't seem concerned that i continued to vomit, sweat and couldn't move because of the pain for 5 weeks. I made an appoitment with the family planning clinic to have the coil removed and it was then that the woman thought i had fibroids and decided to send me for a scan ( the doc) had given me an internal and not picked up on it. Went for the scan and was told i had cysts so was sent for a laparoscopy and it was then that surgeon noticed that i had a very severe form of Endo and my Bowels had been twisted and stuck to the wrong side of my body. I was advised to have a partial hystarectomy but when they came to do that they realised that it was a lot worse than they first thought and i had to have a full hystarectomy and lost 23% of my bowels. I had been complaining to my doctor since the age of 17!!!

  • I was diagnosed by surgery at 19, having seen the family GP at 18. He knew straight away what it was as my Mum and Nan also had the same thing but were only diagnosed when they had a hysterectomy in theirs early 40s. I was lucky to get diagnosed so fast but he knew all the symptoms and was a brillent GP. My first gyne said yes I had and his advise was to get pregnant! that was the best "cure" he said. lol I had just started uni plus had no stable man in my life so I declined that "treatment".

  • I was diagnosed at 21, (5months ago).

    I have always had very painful periods but 2 years ago after a bad spout of urine infections with no reason, masses of pain and 4 months of antibiotics because of Dr's not having a clue of what was going on I fell pregnant with my son (now 14months old). All pain went whilst pregnant an I though all was cured until my 2nd period after having the baby which is when my new Dr, after hearing the history, referred me to a gynaecologist who straight away was interested in the case and booked me for an investigation laparoscopy to be 100%. after this I was promptly put onto injections for 3 months that put your body into a menopausal state. I am also on the implant which is supposed to help as periods are light to nothing on it. I have been pain free for just 4 months and now periods have decided to come back + pain. Frustrated!!!

  • My periods have always been heavy, painful, and made me physically ill, but as you can't really compare with anyone, I always thought it was normal! But luckily I was diagnosed quite early, at 17 (5 years ago) because the family history was discovered when my mum had a hysterectomy (and we had a fantastic gynaecologist). I was immediately put on the combined-pill (Dianette) and had to wait for an investigative laparoscopy. When I had the operation they found far more endo than expected all over my abdomen, and on my bowel, most of which they cauterised, but left it on my bowel because it would be too risky to remove. I'm still taking the pill, only having 4 periods a year, and was also advised that the best treatment would be to get pregnant and breastfeed. As I'm still a student I have seen many GPs, who clearly don't bother reading my notes, and it has been such a nightmare having to explain to them over and over why I've been taking a specific pill for so many years, and why I still need it. Some don't even seem to know what endometriosis is...

  • I was diagnosed at 28 but have been fighting it since I was 13 :o(

  • I'm still not diagnosed so it may not be endo, but i have all the symptoms, i have been diagnosed with PCOS aged 21 (4 months ago) and now im still waiting for a laparoscopy (ive been in and out of hospital for 6 years with excrucaiating pain). i have been going to my doctor since i was 16 with really bad pain, but he didnt listen and neither does my gyni who i also see a different one each time! It makes me wonder, why are you in this profession when all u do is write notes and do nothing that helps me???

  • I had been back and fore to the hospital and doctors with systoms from the age of 11 or so...I started my periods when I was 8 or 9. Over and over again I was told that nothing was wrong with me. It wasn't till I was about 24 when it was dx but only coz I collapsed at work from great lost of blood and large clots. They were going to discharge me until a female consultant walked passed the bed and asked my consultant what was happening with me and when he said that he was discharging me she went mad...telling him that could he not see that I was seriously unwell. After the intial lapro I woke up with the surgeon sitting by my bed with a hundred and one questions...did I finish school....do I work? I replied yes and yes and he couldn't believe that I had carried on with this disease eating me away. Unfortunately, after a number of operations they could not safe my reproductive organs and I had to have a radical hystrectomy at the age of 29. I have no children and have failed medicals to adopt or foster coz I also have SLE Lupus, Sjogren's Syndrome, Fibro and SIRS, Kidney, Liver and Lung problems. I am 45 and have only come to terms with it all. We are a strong nation lets be there for one another and keep strong.

  • Hi, I do really feel for you...i am 29, always in pain since my first period, diagnosed when i was 21 . I wonder wats gonna happen to me...will I be able to have a baby after so much pain and surgeries...

  • I suffered from age 15 and was diagnosed last year at 44 - 9 days before my 45th birthday.

    Years back and to consultants and they just fobbed me off, had my first laparoscopy And that had to be converted to a laparotomy as they messed it up.

  • I am 22 and am having an investigative Lap in the next two months. So far, the consultant has said to me " I'm sure we will find nothing" and rolled his eyes about the whole thing. I have had severe period pains, bowel problems, and shoulder pain, which is refered pain from my diaphragm, for YEARS but he still thinks there is nothing anywhere. He said Endo is too rare at my age.

  • I've been having bad problems since I was 22, although I started my periods when I was 12, but I was quite lucky when I was younger. They slowly get worse as I got older, but then I went on the pill at 17 for acne and I think that masked my symptoms. It got to the point where my periods were really heavy when I was on the pill and they got worse each time. I decided it was the pill making me worse, and it gave me migraines, so I stopped taking it.

    My mum had endo, and the more she saw me during my periods the more she thought I was having endo symptoms too. Mentioned it to the doctor for the first time when I was 22, but got told there was no chance.

    Every time I went back and they told me to try a new pill or whatever, but they always gave me headaches and migraines.

    My main symptom is fatigue, and it was always worse during my period. That got so bad that I had to sleep about 14 hours a day, more during my period. I leaked and stained my bedding, and it seemed to show no let up, still no referral to gynae, not until I was so frustrated I demanded to be referred.

    Gynae just told me I had dysfunctional uterine bleeding and said there was no point doing a laparoscopy. Soon after I was rushed to hospital with suspected appendicitis, which was ruled out so I went home and they said it was linked to my periods. My period didn't stop for 3 months, so I was re-referred, to a different gynae. Straight away he agreed to do the lap, and surprise, surprise, I had endo! I was 26 then. x

  • I was 31 when I was diagnosed with Endo but had been suffering with pain like many other females for a long time before. I had countless scans which showed nothing! every time!!! I got told it's probably just a freak pain that will go away! I did feel very alone at first and was made to feel like I was imagining it, which made me even more persistent. I was eventually told the only way they could know what was wrong was by doing a Lap Op and bingo! they found a large chocolate cyst the size of a golf ball and Endo! Thank goodness I listened to my own body and not to the first advice given, that said it may just go away! I've now had two Lap Ops and even the second time I was told it couldn't have grown back that quick but it had! Endo does get diagnosed as IBS instead sometimes, as the two can exist together but never give up! x

  • I was 11 when I was diagnosed with endometriosis (now 20) I’ve had 3 lap and need through the menopause twice. I'm working but find everyday a struggle! My specialist is a waste of space this is my 4th specialist since I was 11!! I went to see him two weeks ago and he said I’m depressed and to go on anti depressants and go back and see him in three months?? What the..............!!?

  • I finally got diagnosed this summer when I was 45, though I have suspected I had endometriosis for the last 8 years. When I would complain, my GP would tell me that the pain and the blood loss every month was completely normal. I have BUPA cover at work so finally had a lap in May 2010 but was told there was no endo - just adhesions. I had 3 miscarriages (Oct 2003 - Oct 2004) and subsequenlty ttc for 2 years with no success and feel really bitter that if this condition had been identified earlier that I could have had another baby. Now it's too late....

    xxx

  • I got officially diagnosed just after my 19th birthday, but was treated by my gynae as if i had it for a good 6 months beforehand. I have literally JUST turned 20 this weekend. I had been struggling to get some form of accurate diagnosis for my symptoms since i was about 14. since being diagnosed Ive had a lap (&diathermy), tried numerous OCPs (all of which would work for a couple of weeks then I'd bleed through and be in terrible pain) pain meds, mefenamic & tranexamic acid, norethisterone (Which worked wonders to stop an 8 week bleed after my lap, but once i stopped it I came crashing down and was admitted to A&E with excruciating pain and aneamiea) I've now had a coil (fitted under GA) since August, it's been up and down but has been okay until the last couple of days where the pain is bad. but such is life with this disease :(

  • Was finally diagnosed in June this year at age 31, after having problems straight from the onset of periods at a young age. I saw several different gynaes, had numerous scans, got numerous answers, but was finally confirmed by lap in June. Was told I had a small chance of getting pregnant as things are both ovaries and womb are displaced, but would be put on IVF after 9 months if still no success. (I was trying to get pregnant when the problems got worse early this year and was rushed by ambulance in pain to hospital, to be told nothing was wrong and it was just stress!).

    Just found out I'm pregers. So worried about how things will go. But just goes to show that there is such a thing as hope.

    Wish you luck

  • My symptoms started at 19, now I am 20. I haven't been officially diagnosed yet but the doctors strongly suspect it is endo. I'm sorry it took a long time before the doctors started taking you seriously! I understand how frustrating that is. If feel like you have to really pressure them to do something about it! I read somewhere that endometriosis occurs most commonly between the ages of 25-35, but can occur at younger ages.

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