Endometriosis in Teen

[Sezza123123]

Hi can I ask if you have endometriosis what are your symptoms etc I know everyone is different, has anyone had these symptoms since being a teen? My daughter is 14 and for the last 12 months has had really bad stomach pain, feeling sick and dizzy, really bad back pain, heavy periods and exhausted all the time, her back and stomach hurt all the time she has gone on the contraceptive pill now and this has eased her stomach pain a bit and periods have gone lighter but she is still in pain most days and is missing school and other activities due to this. Thanks

When I was that age, my symptoms were a lot like you describe your daughter having.
My periods were also quite irregular but incredibly heavy - I was regularly passing clots the size of 50p coins. I was told it would level out as puberty came to an end, put on the pill etc.
I didn’t get formally diagnosed until I was 26 🫠 and I’d had 3 babies at that point.
If going private is an option for you, I highly recommend it.
I live in America now, and my regular OBGYN referred me to a colleague who specialises in endometriosis and other similar conditions without hesitation the first time she read my plethora of notes from the U.K. - she was also completely astounded that it took 12 years for me to get diagnosed under NHS care 😔

Thank you unfortunately going private isn't really an option for us at the moment, I will speak to GP again it's really frustrating isn't it that it takes so long 😔 did your symptoms improve any at all once you were an older teen? Her back pain is so bad at the moment

(Sorry for the late reply - time difference!!)

The pill did help to a degree - I still had awful cramps during my period, but the pain I was experiencing between periods improved.
Then when the time came that I had my babies and wasn’t on the Pill inbetween, the pain came back with a vengeance and got worse with every baby I had.
The Pill I’d previously been on that had helped was a combined pill, so I couldn’t take it while breastfeeding. I went back on it but a different brand, and it was like a miracle drug initially. I was advised to take 3 packs back to back, and then only have a 4 day break every 3 months as opposed to the usual 7 day break once a month….which was better because I was only having a period every 3 months. But those 4 days and a few days afterwards were hell. I’d barely move from the sofa. I was lucky in that the office I worked in, all of us were friends outside of work before I got the job and the manager already knew I had endo…..so for those few days, she let me work from home instead of being in a crippled heap in a desk chair in the office.
Then last year, I suffered a miscarriage and an ectopic pregnancy simultaneously and needed surgery. That’s the first time a surgeon had actually been in there and seen with their own eyes how riddled my insides are with endo lesions 😔 I’ve since had one excision where lesions were removed from my uterus, fallopian tubes, ovaries and around the cavity that houses all those organs. I’m waiting for a surgery date to have a second excision of lesions on my bowel. I’ve seen a gastroenterologist, had a colonoscopy and she’s confident there’s no gastro condition that’s causing my IBS-type symptoms, and her report suggests that my bowel is otherwise healthy and normal on the inside….its just covered with endometriosis on the outside. Once that’s gone, symptoms should improve 🤞🏻🤞🏻🤞🏻

Dd thinks she has endometriosis. Shes mid 20s now but has had awful periods from the start and other classic endometriosis symptoms. She had to push for a laparoscopy, which is what the NICE guidelines say is gold standard for investigation. She’d had an ultrasound before which showed no signs of it but guidelines say if symptoms are still there then should have the laparoscopy so she was finally booked in.

So when she had the procedure done they said they could see no signs and discharged her. I’ve met someone since who is a bit of an expert after fighting for years for a diagnosis and she told me that Dd could still possibly have it but that it’s been missed. Apparently she should have asked to go to an nhs hospital which is a centre of specialism for endometriosis. That a lot of general gynaecologists will miss it even during a laparoscopy. 🤷‍♀️

dd can’t take the pill due to health reasons but they’ve just fitted the coil for her so she’s going to see how that goes,,,,,but she’s 2 months in and still having awful periods and pain atm.

I was like that as a teen. My endo wasn't diagnosed until my 30s, by which time I was infertile.

Please save up and get DD a gynaecology appointment with someone decent, even if it's not for a year or two (you could look at Benenden Health perhaps?) I wish my mum had!

Aww im sorry you have had a rough time it's awful that there doesn't seem to be more help around these medical problems, my daughter is missing school each week due to pain but she's been told just to manage it till September pediatric appointment it just feels like as she's still eating and drinking and not rolling around the floor in pain she's ok to wait but it's just awful being in pain everyday.

My periods were errratic and extremely painful. I was a teen in the 80s so endo was just being discovered. Ended up miscarrying due to endo and having an emergency hysterectomy at 25. Please get her help.

My daughter, now 16, has suspected endometriosis, and has very similar symptoms to your daughter - I know it's really hard to see them suffer like this. We have a GP who is quite well-informed on women's health and inclined to really listen to her patients, and I did as much research as I could before approaching her. When DD was 14 she agreed to refer her to gynaecology. DD tried some pain management options, but they didn't work so she's now on the pill, which, as you say, helps ease symptoms.

However, given that there is no cure, only management for the condition, and contrary to popular belief the pill does not slow the progress of the disease, I wanted to pursue a more aggressive approach to confirm (or not) a diagnosis, so the GP agreed to re-refer her and we have another appointment to investigate further now she's old enough to have more invasive investigation, as endometriosis can be hard to diagnose via anything other than laparoscopy. Even then, as PP say, it's not a given that it will be found, depending on whereabouts in the body it is - not all gynaecologists are endo experts, and it's important to find a specialist to ensure that excision surgery is performed effectively.

There's a fantastic instagrammer called Jen Moore, who has a book (Endometriosis) coming out this week. She's an activist and campaigner who is incredibly knowledgable and I highly recommend looking at her work to find out more about symptoms and routes to getting a diagnosis and treatment for your daughter.

Thank you so much I will have a look at Jen Moore I'm sorry your daughter has to go through this as well it's awful, hope did your daughter cope at school with it all? I feel that school don't take her seriously as to how much pain she's in.