Share this:
Teenage girls with endometriosis are not diagnosed early enough and are too often left trying to manage the painful, sometimes debilitating symptoms without support.
March 5th to 11th 2012 is endometriosis awareness week, and Jean Hailes for Women’s Health wants to tell adolescent girls that severe period pain is not normal – it should be investigated by a GP or gynaecologist, and endometriosis should be considered as a possible diagnosis.
“We’ve always believed that endometriosis occurs later on in life, and that adolescents just don’t get it, but they do,” says Dr Elizabeth Farrell, gynaecologist and Acting Medical Director at Jean Hailes. “Some girls are living with severe period pain that affects their ability to function day to day. They have to take time off school or work and are told, or just believe, that severe period pain is just part of being a woman. It isn’t.”
Endometriosis affects about 1 in 10 Australian women: Endometrial tissue, which normally lines the uterus, grows outside the uterus and attaches to the ovaries, the lining of the pelvis and sometimes the uterus, bowel or bladder. This misplaced tissue can bleed onto surrounding tissues and cause irritation, inflammation and scarring. Symptoms include heavy and prolonged bleeding, severe period or abdominal pain, pain during or after sex, tiredness, mood changes and bloating.
On average, it takes about seven years to diagnose endometriosis; but when it occurs in adolescence this can take even longer, allowing the disease to progress further and placing women’s fertility at further risk.
Endometriosis in adolescents needs careful management to reduce future health complications, says Dr Farrell. The current gold standard for definitively diagnosing endometriosis is laparoscopy – keyhole surgery – but this should be delayed for as long as possible in younger women with suspected endometriosis.
“I would recommend trying hormonal suppression of the periods – such as prescribing the Pill – to dampen down the progress of what you think could be endometriosis, and avoid surgery until later,” says Dr Farrell. “The aim is to manage symptoms, reducing pain and bleeding so the young woman can function normally. We may do that until the young woman is at the end of her school years and then, if symptoms are still there, that may be the better time to do a laparoscopy to confirm endometriosis.”
For more information, visit www.endometriosis.org.au
Published with the permission of Jean Hailes for Women’s Health
– 1800 JEAN HAILES (532 642)
I was put on the pill at 15 due to heavy, painful periods. I stayed on the pill until I was 37. Many times I stopped taking the pill to see if my periods would be normal, but they never were.
Things got bad when I started get pains going to the toilet. This only happened when I had my period. I would get bad pains trying to urinate. Worse was the pain when I did a poo. Some times I almost passed out from the pain. This is when I went to a gynaecologist. He told me to reduce my stress and lose weight. That was it. No ultrasounds, no further investigations. Being in my 20’s at the time, I wasn’t assertive enough to argue or insist on a second opinion.
At 36 I got married. At 37 I went off the pill to try and get pregnant. At 38 or 39 I went to a different gynaecologist to find out why I wasn’t falling pregnant. That is when the investigations started and I had a laproscopy. By this stage I had lots of endometriosis (endo for short). It was on the bowel and bladder (hence the pain when going to the toilet) and was on the back of my uterus, attaching it to the pelvic wall.
I now faced the choice – operate to remove the endo, then have considerable recovery time before there would be any chance to fall pregnant, or go on hormones to improve my chances of getting pregnant. Given my age, I chose the hormones. No time to waste, I thought. Unfortunately the hormone also accelerated the endo activity, making it all worse.
At 41 I had a hysterectomy, removing the uterus, tubes and ovaries and removal of most of the endometriosis (some was left growing into my bowel, rather than having part of the bowel removed). With the ovaries gone and therefore the hormones that support the endo, it was hoped the residual endo would die off.
So at 41 I was childless, uterus-less and suddenly menopausal. Not quite what I expected would happen in my life.
The moral of my story … listen to your own body. If you think something is not right, see a medical professional. If you are not happy with their treatment or findings, be assertive and seek another opinion. It is your body and your life and you only get one shot at it.
Sorry to hear of all the physical & emotional pain you had to go through.
My mum had endometriosis. Her gynae gave her a shot that stopped her period for 6 months to let the cysts dry up. It worked, but as soon as she started her periods again, these cysts came back.
Her original gynae had to go on a long break, so she got another guy who somehow convinced to get a hystrectomy. At 37, mum had a drastic hystrectomy & went on HRT. Only to be told later than she didn’t really need it. Lucky for her she already had us, so the having kids part, wasn’t too bad.
However, the early menopause & HRT stuff was hard to manage at 37.
I have been diagnosed with endometriosis now. I’m 29, never had kids, don’t know if I want any just yet. There were no symptoms; I just happened to go to the gynae for a routine checkup & the ultrasound picked up the cyst on my right ovary, about 4 cm big.
It didn’t bother me for the last 3 months, but all of a sudden I am getting slight pains. Having surgery in 2 weeks to remove the cyst. I admit, I am a little afraid because I’ve never had surgery in my life, and also of the thoughts on how to deal with this afetrwards.
Oh I’m SO sorry!Before my diagnosis the docotrs tried birth control then nothing then a different birth control, then nothing again, over and over again. It never worked, until one time when at uni I had TWO WHOLE MONTHS when I didn’t even know I had my period (well, it was heavy, but I had no nausea, no pain etc) and I thought that was it, I was “cured”… no such luck. It got gradually worse and by the end of that year I was in so much pain that I would dream I was in pain, wake up and realise I was in pain, and be unable to do anything but crawl to the bathroom and painkillers didn’t even touch it. I’d have 8 hours solid pain, then it would blessedly ease off and I’d get sleep overnight and then it would start all over again the next day. That was when I got the nerve to sit in my doctor’s office and demand to have a referral to a gynaecologist and when I finally got my diagnosis. I’ve never been that bad since, and I never want to, but know it is likely especially as after I’ve had baby I want to try and stay off birth control for as long as possible just to see how things go (am I mad?!)So I totally get you’re whole hope that it was behind you and then the shock and despair at it being back with a vengeance. I don’t know how we drag ourselves to work like that, sometimes I wonder how we even manage to put a coherent sentence together. Take it as easy on yourself as possible. And let us know how things go. I am thinking of you and wishing so much you didn’t have this after having such a hard year… Endo really does suck!! xx