I 19 years old and I have a 2 year old. I have just been diagnosed with endometriosis after having a laparoscopy. Can u get it this young?

[cheddar94]

I feel in shock and just wondered if there are other young people with it?

[squidgy]

Hi there.

Unfortunately yes you can have endo at a young age, even from start of puberty! I was 13 when I started to suffer and I am now 31.

Sorry to hear you have been diagnosed with having this condition, but I am pleased you have had an early diagnosis and not the average 8 years to get diagnosed!

It is a shock to deal with. I find my family, partner and friends are of great support as are the lovely ladies on this site. I recommend looking at Endometriosis UK website to get info about the condition which may help you deal with the initial shock. Also a good book to read is "Endometriosis for Dummies", which is full of information, treatment options etc. It is easy to read and well laid out.

I hope this helps you a bit and that you are having as pain free day as possible x

[Gemx85x]

Hey Hunni I was 15 when I was diagnosed and I'm now 28 and unfortunately still suffer.

[cheddar94]

This may sound like a really stupid question but why does it take 8 year's to diagnose?

[Bokkie in reply to cheddar94]

It can take 8 years because Endo is not taken seriously enough or recognised by doctors who do not specialise in it. GPs often tell you it is 'just heavy periods'. Sufferers do not realise that what they are going through is something more than 'just heavy periods' and don't seek help. Sufferers often think that it is the same for everyone and if that they complain they are being a drama queen. Some symptoms such as bowel problems are thought of by some doctors as being caused by other conditions and investigate them instead. Some sufferers undergo various tests over time that will not diagnose Endo as only a laparoscopy can properly diagnose it. Some sufferers have procedures done over time that do not help alleviate Endo symptoms. It will sometimes take this long to get a laparoscopy done! This is just my experience! XXX

[Impatient]

I was younger too - more than half of us were younger than 19 when we first had problems. Miscarried babies have been found with endo at post mortem - which adds to the theory the cells are in the wrong location from foetl development stage - and probably explains the implantation of endo in far flung locations away from the uterus.

It becomes active as soon as you strt puberty though you may not notice it for some time till the damage hits nerves and you start getting monthly cycle pain.

Cheddar94 - it took me 29 years to get diagnosed.

Why? because I had heard the term endometriosis but didn't have clue what it was all about so had not had any reason to look it up in the library, I had so any symptoms yet not once in any previous surgeries or any numerus visits to the Doctor had a GP ever sent me for tests, scans or to see a Gynaecologist in all that time. I was given assorted BC Pills occasionally and told to carry on taking paracetamol.

And remember back in my teens there was no internet, no advice leaflets, gynae issues were not discussed on tv, heck sanitary towels and tampons were not advertised on telly either.

Good girls did not go on the pill only promiscuous ones, who didn't want to get pregnant.

They were not readily handed out for menstrual control.

I only found out about norethisterone from friend - I had some job to persuade my GP to allow me have that so I could get through exams and a trining course. I was not made to feel like I would be able to get more of them at a later date. The prescription was hnded to me with a great deal of reluctance and I was rather ashamed that I would be on "The Pill" just so I could get through exams.

There may have been some womens magazines that covered a story about endo - but if you didn't read that magazine in a waiting room somewhere how would you know about it. No texting, tweeting...just word of mouth and people did not talk bout womens problems. It was not covered in the teen magazines which was just about all the advice columns we could get hold of.

We had a lady come in to school to give us a talk about periods and give us a sample pack of a sanitary towel and she spent most the talk talking about personal safety as at that time the Yorkshire Ripper was on the prowel and one of his victims had been found a mile from the school - so understandably that was the big thing we were all concentrating on.

When I left school and went to college I opted to take Human Biology because I had no idea about the human body- you don't learn much from disecting a frog and a pigs eye in school.

If someone who knew about endo had read through my medical records the clues were all there for a very long time. If someone had handed me a leaflet listing the symptoms I could have worked it out for myself.

Naively I relied on GP knows best. I had other surgery in the stomach - no one reported the endo at that stage - perhaps they were not trained to recognise it - it was not a gynae op.

After I was in my 40s and complaining to yet a new GP about my periods, she thought fibroids. She sent me for my 1st ever gynae scan. This discovered a severe deformity of the uterus which explained some things, but no fibroids - so again we put my symptoms down to the deformity. I was given traanexamic acid to curtail the bleeds and sent on my way instructed to tke iron tblets for anaemia.

A couple of years after that an ovarin cysts burst - that was the trigger.

I was rushed to hosp, misdiaagnosed with PID, no scans or swabs taken.

a week later back at the GP still in much pain - the penny dropped.

She sent me back to hosp for scans, cyst had burst debris could be seen - one ovary was missing - i was recalled month or so later.

This time I explined to the sonographer that i had a burst cyst. She found it refilled and complex. I told her an ovary was missing too - she went looking for it - found it stuck to the bowel and another 8cm complex cyst which had been missed on all previous scans.

That was Saturday afternoon.

Monday 8am my GP called to get me to in right away for a form to get CA125 blood test at the hosp. I got that collected and went straight to hosp to donate blood. They were full up at the clinic. I had looked up CA125 before going to hosp, so I decided to explain what had happened re the scan results and showed her the form, she said right away "sit down and wait and i will get you in at the end of the session." She did so.

2 days later my GP called me in to see her and explained the levels were high and she was referring me to an oncology gynea surgeon right away.

At the lap op - i awoke to find out it had become a laparotomy. Surprise surprise, after untreated endo for 30 years it was as you can imagine one hell of a mess. I was very gld it was not ovarian cancer - but having endo hd not been picnic by ny stretch of the imagintion.

It is amazing what we can cope with and put up with when we don't know any different.

And with hindsight I should have made a much bigger fuss, and with hindsight every GP I saw had the chance to read my records and spot the signs and failed to do so.

Score of GPs, no one individul to blame.

The only heroine in all of this was the lady GP who on hearing I had had a burst cyst took it so seriously and battled hard to get me scans much more quickly than normal.

My history is sadly very typical for most endo ladies waiting years to have their symptoms recognised and then unless anything untoward happens to speed them through the process to get diagnosed, they will have to wait their turn for appointments to have tests and scans to rule out anything more obvious long the way, and several months to see a gynecologist and then try various BC pill options to reduce their suffering - and perhaps that works so they wait on the pill not chasing up diagnosis till perhaps the time comes and they try for a baby and can't get pregnant and only then are surgical investigations undertaken which is when endo is found.

Believe me it is getting better - awareness is improving the prospects for the younger generations, more variety in ways to manage periods, more effective pain killers, better surgcal techniques. Lap Ops didn't even start happening widely till 1990s.

The internet is fab in so many ways.

For health care and awareness we have come out of the darkages - but there is still lot of work to be done. Many GPs are older than me, or of my generation - they are either woefully unware of endo - or still think hysterectomy is the answer because they were trained at a time when that really was believed to be the best or only solution.

That is still the case in many parts of the world too outside of the UK.

As you were born in the internet age and it is now world wide- I don't think it is possible to comprehend just how isolated teenage girls were in the past. Mums didn't know any more than we did, or not much more. So they were not much help. We were very much dependent on the advice of our all knowing GPs.

There were no endo charities around to spread awareness either.

Hope that sheds some light on why there is has been such a problem getting endo known about, let alone getting all the way to diagnosis.

Even a year or so ago when this forum got set up, there were only about 10 accredited endo centres in the UK.

Now there are 29 of them, and several more pending accreditation. Things are moving quickly in the right direction in terms of getting more and more females diagnosed and able to get the specialist care required but with over 2 million or more females in the UK with endo there is still a long way to go. It is still ratio of over 50 thousand endo ladies per endo centre.

[Bokkie in reply to Impatient]

Hi Impatient, your post could have been written by me! I too suffered undiagnosed for 30 years and only found out I had stage 4 Endo 2 years ago and I am now in my late 40's. I was eventually given a laparoscopy because of CA125 and a suspected cancer. My insides are also a 'mess'. Like you, I also remember no awareness of endometriosis when I was in my teens. I was put on the pill at 15 to help with my periods. I have learnt more in the last 2 years than anyone was ever able to tell me over the last 30 years.x

[Impatient]

Have a look at the "Polls" on the red bar near the top of the page

the top most recent poll was asking how old you were when first noticing something wasn't right. Over half were under 19 years of age.

[sw1996]

You can get it that young, at the moment I am 17 and been suffering the most awful symptoms since I was 13. I am not getting good treatment considering how young I am I think as doctors think strong painkillers may help me. I have now been referred to a pain clinic as they told me my pain was all psychological and in my head which is aload of rubbish!

This forum has helped me so much, talking to woman that have gone through the same expierances.

Hope your ok and you get good treatment x

[Blondedia]

Hi. I got my endometriosis much later, but apparently you can get it as young as 15/16 years.

[cheddar94]

Did endo effect any of ur relationships?

[squidgy in reply to cheddar94]

It sounds silly, but it does depend on how understanding the man in your life is. I am very fortunate that my husband is caring and understanding and he hates to see me in pain, suffering etc. However it can still have an effect on a relationship even with this understanding man. For example finding sex so painful means that our sex life is very scarce and irratic. He hates that it hurts me too. Being teary a lot and not feeling up to doing much impacts heavily on our everyday life. But we get through it as we are both supportive of each other. I am lucky, I know some people on here have had men who haven't been understanding and it has affected their relationship to breaking point.

Family and friendship relationships? Again depends on the people. If you have understanding family/friends is a big help cos when you are having to cancel arrangements a lot of the time, or feeling so ill all the time it helps they understand this. But endo can affect your social life, home life, love life..both physically and mentally. Even with having understanding people it can get me down as I feel that I am letting everyone down and they must be fed up with me. My mother in law really still doesn't get it and thinks that If I have managed to get out then I am better, or that I need to take a vitamin pill and that will solve it. This can get frustrating.

I hope you have understanding, supportive, caring people around you xx

[Smudger_79 in reply to squidgy]

i second this. I also am lucky to have a very supportive man..i had been diagnosed before meeting him and was honest from the off that things would be a struggle. Been with him almost 14 yrs, wed for almost 11. Honesty is the best policy..explain things, dont bottle it up. Painful sex is a constant issue in my house but luckily my man is a good one.

I always found telling people right from the start has always been helpful..it's time the taboo was lifted from this awful disease.

[squidgy in reply to Smudger_79]

well said. Honesty throughout is definately best. Glad you have a supportive man in your life too xx

[ChemicalMix]

Yes! It's usually seen in older people but it's not unusual to have it at your age. I am 19 and also have endometriosis You are the first person I've heard of that's the same age as me that has it.

[cheddar94 in reply to ChemicalMix]

Really? well im glad im not the only one

[lioness109]

I was 22 when I had a sudden hysterectomy of my uterus for adenomyosis. I was called possibly infertile at 17 but she never explained why, and i blew it off as just family history, but I had 2 kids so not totally true! My hyst was a spontaneous surgery from my doctor who tied my tubes missing the fact that I had an abnormal uterus and adhesions outside of that (signs of endo), and having to go in 6 minths later to fix it. So, yes, you can have it early on and you're LUCKY to have someone identify it for you so early! I'm 24 and STILL trying to find a gyn who will listen (the old doc was a quack who could do no wrong, and won't listen that he left some endo behind)

[Smudger_79]

i was diagnosed late teens/early 20's hun...now almost 35. Still suffer after many ops including both tubes removed less than a year ago. Totally infertile as i have PCOS with no ovulation also...Had IVF to get my daughter tho ...it's blighted my whole adult life, it is very hard and can feel like nobody understands. It's a hard pill to swallow when you get diagnosed young. I have struggled many times with that but the more knowledge and support from places like this the better xx

[cheddar94]

I have gotten over the shock and now im just struggling with the pain of the surgery. I am going to speak to the doctor tomorrow to see about children in the future and if I will need more surgery. I have been with my man for 4 yeats and he understands but I dont think iys fair on him. The endless night he has sat up with me in pain and crying constantly I feel like it will never end

[lioness109 in reply to cheddar94]

My hubby isnt the most patient man in most circumstances that stress him, but with endo he is Very calm and collected. I told him specific ways for him to help, like being an open ear and quality time AWAY from the house (when you sit you feel more stuck), and he always has a google hangout window open at work in case I need to talk or he sees an article I might benefit from. Having him in the fight with me has helped him tremendously. The more I try to keep it all in the more likely I am to explode on him or the kids, which really isn't fair, so I try to let him know when my good weeks are and when my dangerous ones are, and even show him screen shots of my monthly cycle chart! The more you share in it, the better it is for both of you. I can't count the number of times I've said "I'm sorry" for simply being in pain, so the guilt thing is still there, but it's lessened when you know he's in your fight and not just a victim of your whirlwind.

[cheddar94 in reply to lioness109]

I feel like if I knew when I was about to have a bad week then I could tell him but I cant because its constant. I don't have a monthly cycle anymore which doesn't help things either

[lioness109 in reply to cheddar94]

It took a lot of trial and error but I found the stabbing pain was ovulation and the cramp pain was period. I don't have a uterus so I can't menstruate but I track what I can on Monthly Cycles, an app that tracks symptoms and products ovulation. I just put a fake period in on what I figure is "day 1", or a fake Ovulating test positive on those "ice pick in the ovary" days, and it adjusts the rest. Not 100% accurate but after a few months you get it figured out enough.

[_Tamsin_]

I am 20 and my symptoms started when I was 19. I read somewhere that it is most common between the ages of 25-35 but its not uncommon to get it younger. I haven't had an official diagnosis yet but I can understand it must have been a shock, I hope you are feeling okay

[cheddar94 in reply to _Tamsin_]

Thank you I hope you get an officialdidiagnosis soon