Daughter diagnosed with endometriosis at 15 years old.

[Abbie1987]

Hi there, my daughter was recently diagnosed with endometriosis. It's all so new to us and I have no clue about any of it. If anyone could please help with any advise on things that help, diet/foods that help. I would much appreciate it.

Abbie

[BryonyB]

Hi Abbie, I’m 28 and recovery from my third surgery for endo. I wasn’t diagnosed until adulthood as I think endo was just not a thing for a lot of doctors when I was younger! I found the diagnosis comforting but also very scary so she may find it useful to know there are groups (such as this one) and zoom meetings / support centres IRL who she can chat to as well. Heat pads/tens machines help me! In terms of diet, it is so down to the individual but I found onions, beans, cruciferous veg to be quite triggering and found fish, lean meat pretty easy. I have endo on my bowel so have quite a few bowel symptoms! Anything anti inflammatory is pretty good - I add a lot of turmeric to food. Also I love exercising and find it really helps but it has been an adjustment not being able to do certain exercises during a flare. For example, I find running very difficult when I’m in any pain and sometimes it can trigger a flare. I really enjoy pilates and anything that works on gradually building pelvic floor as I think this really helps if you ever have surgery. Anyway…happy to chat more, hope that helps. Hope you and your daughter are ok x

[Abbie1987 in reply to BryonyB]

Thank you so much for all this information it's so overwhelming receiving the support on here from people we don't know. Thank you!! I'm sure I'll be asking questions along the way so would love to keep in touch. Thank you so much again I really appreciate you taking your time to reply. Xxx

[crbp]

I’m 25 and have been suffering since I was 11 with endo. I used to pass out and was put on birth control at age 12 — this really helped for a few years.

throughout the years I’ve tried many things and here are some that really helped:

Hormonal treatment: birth control pill. I also have a coil now.

Diet: no red meat and no gluten

Tens: myOovie - this is a great little discreet device that can relieve so much pain

Exercise: frequent exercise is a big help.

Weight: staying at a healthy weight is important if you’re using hormonal treatment- hormones loose effect the heavier you are and they don’t adjust the dose for individuals (so stupid). This can be super hard to do (I am trying so hard to stay at a good weight and it can be so hard) but it does help.

Heated blankets are great too.

That said, these won’t stop the endo from progressing just help manage the pain. The only thing that will really get rid of the pain (at least a few years) is excision surgery.

I hope this helps — it can be so hard but one of the best things you can do for her is validate her pain. She’s about to enter a journey into the horrible world of women’s health where gaslighting is prominent.

[Abbie1987 in reply to crbp]

Thank you so much for taking your time to reply to my post. This information is all very helpful thank you xx

[Prilo]

if she was or is still using cocodamol for her pain or any of the opium drugs, she is quit and ask for other painkillers.. it worsen my symptoms which improved when I stopped using it.

[BloomingMarvellous]

Hi Abbie, you might find Heal Endo by Katie Edmonds ( Amazon ) a good resource . It’s study based , has lots of info on diet approaches and other useful resources.

[Abbie1987 in reply to BloomingMarvellous]

Thank you so much I really appreciate this xx

[BloomingMarvellous in reply to Abbie1987]

you are very welcome 😊

[AMJ88]

Hi, I'm 34 and have been diagnosed with Endo. I have a 16 year old daughter who unfortunately shows signs of Endo, vomitting and severe back pain when on her period. She has heavy periods aswell. She has since gone on the mini pill and so far she has had very little bleeding so hopefully this will be enough for her for a while. I found Drs didn't take me seriously for a long time, I will do my best not to let that happen to her as and when she needs it. Xxx

[Abbie1987 in reply to AMJ88]

I'm so sorry your daughter is now struggling with the symptoms too and you went through absolute hell to finally get a diagnosis. It's so exhausting as a mum to see your daughter suffering like that let alone having the condition yourself. I really appreciate your reply thank you. I do help things ease even more so for you daughter. And I make you right, do your best to make sure them doctors take you and your daughter seriously. Xxx

[Serviette]

Hi I've been recently diagnosed in my 50's but struggled from a young age with symptoms and not understanding what it was or being sent home from the doctor with Painkillers for heavy periods. I had a recommendation to read Eleanor Thom's book Private Parts. She was diagnosed at a young age, it's a large book but easily digestible, full of practical tips and guidance whilst keeping it as positive as possible. Main thing that helped that I me wish I'd known at a younger age, if she's suitable to take Tranexemic acid for the first few days of your period to reduce heavy bleeding. I wanted to shout it from the rooftops for all the women out there as it was a game changer for me so I could leave the house. A locum mentioned it to me a couple of years ago after many unsuuccessful trips to the GP. It worked a treat to really reduce bleeding. Doesn't help with pain, though really helped my energy levels and iron from the blood loss but also with the worry of being out caught out and permanently wearing dark colours near my period. It really slows the flow in some women. Great you're seeking as much advice as you can and wish you the best. Find your nearest BSGE centre, get your elbows out and good luck x

[Abbie1987 in reply to Serviette]

Thank you so much for this information I will look at this book right away. Funny you mention tranexemic acid as my other daughter is on them for her periods. My older daughter who has the endometriosis is actually taking the other one which is menafanamic acid which works the same as trenexamic but its for the pain and not the flow. My daughter has now been put on a mini pill that she has to take without a break all the time up until she starts a family basically. We are currently actually back in A and E as she hasn't eaten properly since she came out of hospital 3 weeks ago after having surgery to remove two cysts from her ovary. It's been a nightmare.

Thank you so much for all the information

Abbie xxx

[Serviette in reply to Abbie1987]

Glad it was helpful. Knowledge is everything with this conditon and good that awareness is improving but still a way to go. Oh such a worry and hope she's home soon and starting to feel more herself x

[EmB18]

I found making diet changes made a big difference to my endo symptoms. Gluten, sugar, alcohol and caffeine were triggers for me, but we all react to different things. Adding in plenty of anti-inflammatory foods like fruits and vegetables helps too. Great that you are thinking of putting in some dietary support whilst your daughter is young, I wish I had started doing that earlier!