hi guys I’m new here Im 18 and just recently been diagnosed with endometriosis after 8 years of suffering and being turned away , I’ve been in and out of hospital every month for the past 3-4 month now and am just wondering if there is anything you guys can recommend for the pain or for the sickness or the body tenseness or even for the help for my mental health as people my age are all out loving life while I’m in and out of hospital can bearly move
Any support would be appreciated!
Thankyou in advance
Written by
Kayleigh1x
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Afternoon, well, the good news is you’ve had an early diagnosis if you’re only 18. A lot of us on here waited deacdes for a diagnosis. I’ll try and keep it brief so will bullet point and hope it helps a little.
1. Get on the internet and go to the respectable websites that have reliable information on endo. There are many and I find it useful to look at the sites in USA, Australia as well as UK as they are helpful too.
2. Get your diet on the right track asap, you might find cutting out dairy, gluten and sugar works wonders. It’s hard but worth it. Diet isn’t a cure but I promise you will help. Loads of books out there on endo diets and healthy recipes.
3. Try and build your medical “team” around you. If it’s at all possible, try and see the same GP, (not easy) but being passed from pillar to post won’t help you. Trust your gut instinct if something doesn’t feel right, it usually isn’t.
4. Educate yourself about your new condition. It’s complex, but reading lots will help you make your decisions when it comes to treatment so you can ask questions without being fobbed off.
5. On the days you feel well, try and get out into nature and do some gentle exercise.
6. Don’t always expect your friends and family to understand. They won’t. If/when you get any sympathy and/or empathy and compassion from others, treat it as a wonderful bonus, and if you’re in a relationship, make sure that person is stuffed with love, hugs and kindness for you, anything else isn’t good enough.
7. If/when your pain becomes unbearable there are TENS machines that might help. Again, research and experiment. Painkillers never touched my endo, but I find simple ibuprofen and paracetamol taken carefully together worked best for me. Plus point 2.
8. Cut out completely or cut down on alcohol. Your liver will thank you.
9. Be kind to yourself. Endo is isolating and very difficult to cope with and on the worst days you will feel horrendous. Know (for most of us) it will pass, so make the most of the days you’re not in pain.
10. Keep checking in here, there are many lovely ladies on here, and often can be a big support. Treatment is out there, but it’s a minefield to manoeuvre round, hence the “knowledge is power” aspect to being newly diagnosed.
Thankyou so much , yes I have been fighting for my diagnosis since I was 10 when they kept changing my contraceptive pill because of my age , I am just struggling as I don’t have much support around me family wise and don’t live at home anymore , luckily I do have my partner who is very supportive, but I do feel very isolated at the moment and wish I didn’t have to go through this I bet we all feel like that xx
We do all feel like that from time to time. It can be a lonely introspective journey, but then you don’t need an old fart like me telling you that. With chronic and debilitating endo, it does sometimes feel like you’re the only one writhing in pain on your bed and everyone else is throwing a party! 🥳 Great you have a supportive partner, I didn’t and learned the hard way. Wish I’d known at 18, what I know now. Best of luck with your pain management etc.
Welcome! Pleased you have your diagnosis. I second everything that Brambledoggy has said - great advice there. From my experience, reducing or completely eradicating caffeine helped. I now drink heaps of lemon and ginger tea with a slice of lemon in (stick with it, it becomes delicious in time!!) that seemed to help with inflammation and sickness. Also peppermint tea. Yoga really helped me too. I get that when the pain days are really bad, exercise is the last thing on your mind but I found that the breathing techniques and some poses can really help you manage some of the pain. I’d highly recommend finding a pelvic health physiotherapist. If there isn’t one near you/the cost is prohibitive you can find some fantastic folk online who share many useful resources and videos for free - Dr Brianne Grogan in the US is my go-to. And lastly, this forum has been so valuable to me in my journey. Reach out if you need help or have tips that can help others! Good luck x
Welcome Kayleigh1x! It’s good to hear you had your diagnosis although I’m sorry you have to suffer this since you were 10!!
I totally agree with Brambledoggy, diet isn’t the cure but helps to avoid major triggers and flares.
I personally would add that some supplements also help. Obviously it is very subjective but a lot of us commonly take vitamin d3, omega 3 and magnesium glycinate. Again it is very subjective but I found that is something that helps. Do your research is true and please do not believe any tiktoker or newly expert on social media but read articles and medical papers. I can say however that some accounts are really helpful and give nice tips or simply make you feel less alone.
I also have an issue with medications, they had to give me more at the point that nothing worked anymore didn’t matter how strong it was so I had to remove everything to find out that I manage better without and take them only on flare days.
Additionally to the TENS machine I found the heating pad helpful (my obi for example).
Welcome 💛. I’m glad you’ve came to this forum as it really does help. I have a lot of issues with nausea too so my gp prescribed some antisickness pills and they are a god send. I only take them while I need them but it helps. Feel free to message anytime xx
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