How old were you when you first experienc... - Endometriosis UK

Endometriosis UK

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How old were you when you first experienced recognisable symptoms of endometriosis?

JaneHJ_CEO profile imageJaneHJ_CEO772 Voters

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27 Replies
sara75 profile image
sara75

Am sure this is just a coincidence, but I had 3 of the monthly Prostap injections to put me into menopause, periods returned 3months after the last injection, and my very first symptoms started a couple of months after that - at this point I was 35 which I thought was quite old to first get symptoms, although looking at pie chart above, I'm one of 10%. Am certain the Prostap didn't trigger the endo to start, but it's a weird coincidence!

BigAuntieMeg profile image
BigAuntieMeg

I got sent home repeatedly by my doctor for making up that I had stomach pains so that I would get to have an operation! He thought I was pretending to have appendicitis. He even made my dad tell me off.

Alarna profile image
Alarna in reply to BigAuntieMeg

Am I reading this properly

RachLL profile image
RachLL in reply to BigAuntieMeg

I had the EXACT situation! i look back now and i am disgusted in the healthcare system

limbiloo83 profile image
limbiloo83

I was 15 when things got really bad, I kept getting told that I had to stop being silly as every woman has a period and Im just not used to them.. My period arrived on my 10th birthday worst birthday present EVER! I wasnt taken seriously until I had a big bleed out with my period and I was rushed in for my 1st lap. Was nice o tell the doctor "told you so", I still see the same doctor but he listens to me now.

KimJL profile image
KimJL in reply to limbiloo83

Yes from age 10 to 28 I was told that I was just one of the unlucky ones and that I had to find a way to cope with the pain. I was also told by female doctors that I cannot and should not 'use my period as an excuse' to miss work & school!!! I finally got diagnosed in 2005 at age 28!!

Chrissie66 profile image
Chrissie66

I had to have loads of time off work every month in my first job. My work made me go and see a private gynaecologist to 'prove' there was something wrong. Strangely a smear test didn't show anything up. I was 19 and terrified and made to feel as if I was making it up. Diagnosed when a 15cm cyst burst when I was 26. I'd been told by said private gynaecologist that my symptoms were normal Women's Problems and work had given me a written warning so I'd just been fighting through it. Looking back now I am absolutely furious and really sad for that 19 year old girl who was told nothing was wrong...

EzioSammie profile image
EzioSammie in reply to Chrissie66

I can sympathise entirely, I've had docs refuse there was anything wrong with me due to my age... It's not fair.

Bokkie profile image
Bokkie

During my teens I thought that my heavy periods were normal. In my 20's I went to see a Gynae consultant at the hospital with dragging aching pains and was told that she couldn't find anything wrong and only come back if I couldn't get pregnant. I now have 3 children. I somehow managed without any treatment for years other than tranexamic tablets for a period of 10 years. I was finally diagnosed with severe stage 4 Endo and a chocolate cyst at the age of 46!

reese28 profile image
reese28

when I was 13 I have lots of pain from my period pain everywhere...till now I am 29

Scooteeder profile image
Scooteeder

I had painful and heavy periods as a teenager, and was put on the "Pill" to mask these symptoms. However, at the time, I didn't even know Endo existed.

My painful and heavy periods returned with a vengeance in my early thirties, along with fatigue, cramping, upset stomach, bloating and nausea. This was about 2002. My G.P. didn't refer me to Gynae until 2006, and then I was misdiagnosed with Polycystic Ovaries. I was still given NO treatment by my Gynae.

The G.P. tended to try to dismiss my symptoms. I cannot describe the number of times I've had to listen to things like "it's just period pain", "it's in your head", "it's anxiety/depression" and "there seems to be nothing we can find that's wrong". In 2008 I had a colonoscopy because of bad bowel symptoms including cramping and diarrhoea. I also had a hysteroscopy. Afterwards I was told I did not have Polycystic Ovaries, but my symptoms were never explained to me and I was "written off" with just having Menorrhagia! I tried the Pill, the Mirena, Tranexemic Acid, Mefenamic Acid and painkillers - all to little relief.

By 2010, I was at my wit's end, failing to conceive, and demanded a second opinion. My first laporoscopy in 2011 confirmed Endometriosis (I was, by then, 40, and too old for my NHS Trust to fund IVF!). I have since had 2 further surgeries to excise my Endo (which is deep infiltrating Endometriosis, in my utero-sacral ligaments, pouch of douglas, and by my bowel). I am due for another lap in March this year.

The worst part of this is that, during an appointment when I asked to see my medical records, I noticed that there was a letter to my G.P. from the surgeon who had done my colonoscopy way back in 2008. HE suggested my symptoms were ENDO. I also saw a report from my hysteroscopy, and this again suggested ENDOMETRIAL POLYPS, or ENDOMETRIOMA.

I am DISTRAUGHT that nobody in the NHS, which is a service you rely on to CARE for you, bothered to take note of these reports. If somebody had acted on them in 2008, I might have had FEWER years of suffering, less disbelief, and the chance to try out IVF. I might also have been able to explain my illness to my employer, thus avoiding the embarrassing problems I experienced at work, because I could not say for definite what was wrong. I might have been able to get on with my career and social life more effectively.

It looks like 40 is quite old to be diagnosed. However, in my experience, I reckon there are LOADS of women who COULD (like me) be diagnosed at a younger age - if only the NHS got its act together!

Rrl12345 profile image
Rrl12345 in reply to Scooteeder

I am so sorry to hear what you have been through, I have just joined the community online this morning as going through a really hard time at the moment, my beautiful amazing mum lost her battle to ovarian cancer four weeks ago and I miss her so much. I am in lot of pain again today during my period and she was the only one who understood as she always suffered with painful periods and I think it was endo but they never looked into it properly for her. My situation and story is so very similar to yours and it is devestating, I have only just been told endo but had no support or explanation of advice after years of back and forth to doctors and I will turn 40 in few weeks. I don't know what to do or how to deal with any of this especially as my grief is consuming everything but when I saw your story it is so similar to mine I wanted to reply so you know not alone, hope you are ok today. X thanks for sharing

Brownlow profile image
Brownlow

Many thanks to Endometriosis UK for instigating this fascinating poll.

Princessm profile image
Princessm

My pains started at 19 and a doctor said that's what he thought it was but did nothing. Finally got treated at 20

_Tamsin_ profile image
_Tamsin_

My symptoms started at 19, now I am 20.

MaggySimmo profile image
MaggySimmo

I was told for years that it was normal and was made to think that I was making it up. For years I kept going back and was sent home repeatedly, after 5 years I finally had a lap and it was diagnosed, it affected me that bad I'm scared to go to my doctor now whenever anything is wrong.

hayls profile image
hayls

I first knew something was wrong when I was 16/17 years old as I would double over in pain after sex for a day or 2, i didnt really realise at the time that there was much of a pattern to when it would be bad so I didn't go to the doctor, and realistically I doubt they would have picked it up then, it took me years to connect it with my heavy periods as I thought they were normal! My Gynae thinks that my ovaries and uterus had been stuck since then and that was the first sign of it being stage 4 endo - I was 16 and didn't have diagnostic lap until I was 28 and now struggling to get pregnant! If there had been more awareness whilst I was at school maybe I would have had treatment earlier

My endo pains started quite recently in my early thirties but I also have a thyroid problem which was undiagnosed for a few years prior to this (the GP constantly dismissed me as tired and stressed) and I honestly believe this is linked to my endo.

Steph3491 profile image
Steph3491

I was told at 15 that I had PCOS, after 6 years of pain being written off to that and finally getting a lap, they discovered that I have endometriosis. Just shows that we women know our body's better than those that are supposed to take care of us!

norb profile image
norb

I'm looking at the poll when there's 366 votes and over 50% of voters were younger than 20. That's completely shocking and unbearably sad I think. They didn't really get a chance to enjoy life as a teenager should and nobody understood that. What a crying shame these blighted young lives and their squashed potential are all but invisible to society.

liverpool8 profile image
liverpool8

I had my first lap last Friday and was diagnosed with stage 4 endometriosis I am 49 and have only had symptoms for eighteen months.

gigie profile image
gigie

I went to doctors constantly doubled up in pain from my teens doctors kept telling me it was just bad period pains and everything would be fine once I had children and treated me like I was making it up was not diagnosis till I was 35 after several miscarriages and then told would not be able to conceive naturally and would need ivf did not work 43 years old now and still suffering x

I am 16 now but have been going to the doctors in agonising pain for 5 years and only now I have changed to another surgery in my town have I been seen to. In the one appointment I've had with my new doctor he has helped me and sent me for tests... something of which my old doctor NEVER did. My new doctor says there is a 50/50 chance it could be endo but he isn't sure as I am so young but he is completely against how I was treated and the meds I was put on as I was clearly being put on meds to shut me up for a while until I had given them enough time to 'settle in' for me to realise they dont work! So irritating but I am so happy something is finally happening :D pain has been my life since I was 10/11 and I know it wont stop but I do want answers :) x

daylightdreamer profile image
daylightdreamer

I've had painful periods ever since I was in high school, but it wasn't until recently that I've had pelvic pain that I'm sure is from endometriosis. I'm 27 now. Until this year, I wasn't sure if the pain I was experiencing was normal or not; now I'm sure that it's not.

I've always had heavy periods, but they haven't always been painful. I did have this weird pain when I was in my late teens/early twenties, maybe that was a cyst, but I don't think so. I gotmy first Chocolate cyst at the age of 36.. I think it ruptured at the time too.

KimJL profile image
KimJL

Wow! Most people were really young. I started menstruating when I was 10 years old & I had horrible pains, extreme fatigue & severe bowel changes. These symptoms just got worse and so did the PMS & mood swings- as if you need more moodiness when you are a teenager!! I finally got diagnosed with Adenomyosis, after a biopsy was done from tissue that was removed during a myomectomy, at age 28! Things were ok for a while, but then reverted & I was ill everyday for about 3 years 2008 to 2011. Severe, chronic migraines also became part of my life around 2008- they are horrid!! I started Traditional Chinese Medicine treatment for pain management, IBS, migraines & other symptoms, which includes acupuncture, herbal treatments, heat therapy & cupping. I finally got the go ahead for a hysterectomy from my gynae, then she re-located to be with her hubby. I found another great gynae & I am going ahead with open subtotal surgery on December 20th, 2016. I am actually having my last period right now!!! Best of luck to all the ladies out there trying to cope with this condition.

Bdgjdjd profile image
Bdgjdjd

From the first period it was so painful i was not able to walk and they did scan for me (ultrasound) and the doctor said my pelvic was so clear and the pain was a sign of (The power of fertility) and i was so happy for that even with pain . btw i was 11 years old i got the pain again when i was 17 the exactly pain i got it again i went to the emergency and they told me i have 7x10 cm cyst so big and i had a lap and they confirmed The chocolate cyst endometriosis symptoms was difficulties walking lack of popping and peeing it was so painful i still have this symptoms but i think lupron helps me a lot