I’d Appreciate Learning About Individual Experiences With Endometriosis

[amaryllisLu]

Hi everyone- I’m new to this forum! I am interested in knowing when you all started suspecting endometriosis or if you even thought of it at all before you were diagnosed. I’d also like to know what it’s like living with endometriosis. For me, I’m not sure if I have it or if I just have bad periods, (although I know endometriosis is so much more than just a bad period). I’d appreciate knowing other people’s stories though. I want to understand endometriosis better before I start self diagnosing. My mother is convinced I don’t have it, so I haven’t seen a doctor yet. (I’m 17 years old) Thanks so much everyone!

[elisepalmer71]

Hi Amaryllis

Take a look at my posts and follow me if you would like. My daughter was diagnosed aged 14/15. She’s well managed now and discharged from endo specialist. I would avoid offer of lap for diagnosis at this early stage because they can get working diagnosis from symptoms. Hope that helps.

Blessings. Elise and Holly. X

[Bobbob16]

Hey,

I am 20 and a few months ago had a laparoscopy and was diagnosed with stage 3 endo. I have really bad period pain and heavy bleeding since I can remember and I have a family history of endo. In my later teen years (definitely 17-19) I thought I had it but also thought maybe I was just complaining and it was normal to be in that much pain. Its different for everyone but I tried most things (the pill, changing my diet etc.) and nothing worked. I did heaps of research and talked to people I knew who had it to get their experiences. Finally I told my dr. i thought i had endo and he referred me to an OBGYN. (I had seen an OBGYN when I was 18 but she dismissed endo despite the symptoms and family history and just said the pill was the answer but that made it worse). I explained my symptoms to the OBGYN and he instantly said endo. Then I had the surgery (It was my absolute last resort but I am so happy I had it). If the pain is really bad and you also have other symptoms of endo (back pain, nausea, tiredness, headaches etc.) I would definitely suggest seeing a doctor but I wouldn't do the surgery until you think thats your last resort. Hope this helps! x

[Chrysta123]

Hey,

I think I was about 16 when things didnt quite seem ‘right’ (I was in a ridiculous amount of pain while on my period, just felt generally exhausted and also most months actually had 2 periods) but I had people telling me I was just being dramatic so I thought maybe it is just in my head. When I was 17 I decided to at least speak to the doctor about having more than 1 period per month as the pain was slowly getting worse so then I was put on the pill which did help for a while. At 19 I spent months seeing different doctors asking to be refered as I couldn’t cope anymore and around 20 I finally convinced my doctor to refer to my gyne as by this point I was having what I can only imagine feels like labour contractions and I couldn’t even go to the toilet while on my period because it was too painful (my body actually physically wouldn’t go) at that point luckily I had an interal scan, std tests and other prods and pokes and asked 1000 questions to finally be told they were pretty sure it was endo, because of my age they didn’t want to do the surgery which I didn’t want if I could avoid anyway so didn’t put up much of a fight. 3 years later i’ve tried who knows how many different painkillers and even a blood thinner that they thought might help, i lost weight, i changed my diet but nothing is helping except the relief of only having a period every 9 weeks because of taking the pill back to back! Anyway I am due my lap on Friday and hopefully this can get more under control for me.

I hope that helps you but honestly if your gut is telling you something is wrong listen to it, it’s your body so you are going to be the best judge of knowing if things have changed and endo isn’t something that comes later, my gyne said as soon as you start having periods you are then at risk so even if you don’t get the lap (which at your age I get - im 23 and still so nervous as I do want kids in a few years) but at least you could see what pain management or other options you have, or it could even be something else

I hope things go well for you!

[luthien]

Hey, I've posted my experience of it all a while back, have a read

"All this effort does pay off - my story - hope it helps !"

You should be able to search for it xx