Endometriosis in a teenager

[marmiteforever]

Hello all.

My dd has had severe pelvic pain on and off since the age of 12. After many hospital visits and appointments (mainly with gastroenterologists) she saw a gynaecologist who thinks it's likely that she has endometriosis. Without a laparoscopy we won't know for definite though.

Dd is now 15 and has been given the combined pill to help.

I'd be interested to hear from anyone who's teen has been diagnosed with endometriosis. When I have talked to people about this they are surprised to hear of someone so young with this condition.

Any advise would be so welcome. Dd still suffers a lot of pain and a result misses a lot of school (which is not good in the year she sits her GCSEs)

Thank you

I was diagnosed (by laparoscopy) with endometriosis in my early in my early twenties but in hindsight definitely suffered as a teen. I had terrible pelvic pain and endless flooding periods right through secondary school, refused to go on residentials and dropped out of guides as I couldn't cope away from home with it all.

I had a laparoscopy then was put on a pill (I think provera) but it came back so I needed a second surgery followed by a mirena coil. I've now had mirena coils ever since (apart from pregnancy) and have had no further problems (I'm nearly 42 now).

If I'd had the chance to have the laparoscopy and better treatment at 15 like your DD, it would have completely revolutionised my teenage and university years. It's a very simple day surgery with a quick recovery, so would probably involve missing less school in the long run.

Best of luck with it all!

Hi OP,
Like Jerry, I was diagnosed aged 20 when I had a laparoscopy to remove a cyst in my ovary. The surgeon found another cyst, and endometriosis.
My periods went from painless to very painful when I was around 16, so that's probably when it started. I bleed heavily and with clots, plus my intestine is affected (constipated a week before).

I'm also on the pill. I'm lucky to not have any side effects. In fact, I feel better when I am on with than without, and an endometriosis researcher I know pointed out how the pill eases some symptoms.

The only medication that removes my cramps is mefenamic acid, which also reduces blood flow. Has your daughter tried it?

Like Jerry also I suffered a wide ranging effect of endo during my teen years also because it was not recognised by anyone (and my problems with it began upon onset of menses at 14. I was finally diagnosed with this at 31).

There is far less awareness of endometriosis even these days and many people suffer for years unnecessarily because its not recognised by some GPs either. Its the second most common gynae problem seen in women and young girls after fibroids.

I would encourage your DD to have a lap operation going forwards. Educate yourselves re endo because knowledge as well is power and this could also help assist in making treatment decisions.

This is also a useful website for you both:-

www.endometriosis-uk.org/

DD is 17 and has suffered since she was 11. Due to other issues, she is unable to have a laparoscopy at the minute and probably not for a few more years.

She takes the combined pill back to back and just takes a break during the holidays at Xmas, Easter and summer so she misses less school.

As a result of her other medical treatment ( stomach, liver and kidneys) her specialist put her on a gluten free diet 6 months ago and it has made a massive difference to the endo pain. Looking at other boards for endo sufferers, this appears to be quite common and might be worth discussing with the medical staff.