Endometriosis help!

[JadeGreen17]

I'm 18 years old. I've been dealing with excruciatingly bad periods from the age of 14. The sort of period pain I would get at first would be so bad that it would wake me up in the middle of the night feeling incredibly sick. for the past 3 years however its gotten so bad that during my period I cannot move from my bed except to go to the toilet and even then I have to bend over when I walk, I throw up for the first two days and cannot eat or drink anything, my thighs go completely numb and feel like dead weights when I walk and my back and stomach go through chronic nonstop pain, & my muscles go weak and sometimes I even have trouble breathing. It's had a significant impact on my life, I missed a high school exam because of it, I lost my first job due to missing too much work because of it, my family are all so fed up of having to look after me when it happens. No painkillers help as i cannot take them with a drink as it just makes me throw up.

I am on the pill and have been for the past two months and it reduced the pain to 50%, however the first actual period I got on the pill happened about two weeks ago and made me lose a job trial as I had to run to the bathroom and throw up and I cried in the bathroom stall for 10 minutes because of it. I really want to get tested for endometriosis, I went to see my GP about it back in December and she said she referred me, but so far i've heard nothing back.

I am also addicted to hot water bottles, its become a huge problem. Since the pain ever first started I always had to have a boiling hot water bottle as it would only numb the pain if it were boiling hot. But having it for so many years, has caused a huge burn mark on my back, and my brain has associated it with pain relief to the point that if i don't have it, my brain thinks i'm in pain and my body reacts to it so i can't even sleep unless i have it. it's sore, dark and embarrassing and i had to tell my ex boyfriend it was a birth mark because the reality was so stupid. i have tried alternative methods like a TENS machine but it didn't work, i always come back to the hot water bottle. I can't wear backless shirts or anything without worrying about how my back looks and i just want to find a way to live without it. can anybody suggest anything??

[heatherflowpow]

Oh dear. Oh dear, oh dear. I'm working a front desk job and I'm about to cry just reading about this.

I am so, SO sorry that you've had to endure this. And I'm so sorry this is the first response you're getting when you posted this a few months ago. I hope you see this message.

You need to get into a gynocologist ASAP. I don't know how the referral thing works--I thought you could just go in to see a gyno?--but if you have to have a doctor refer you, go and see every doctor you possibly can until someone refers you. This is ridiculous--you should have been referred a long time ago. Ugh.

I know how exhausting it is to seek out doctors. At some point you're sick of looking, and it's easier to "accept" that you're not going to find someone who can help.

Never believe that lie.

While you search for the right doctor to get you to the right OBGYN, can I make a recommendation? Get on Instagram. After my diagnosis, I was struggling with the loneliness that chronic illness brings. I got an Instagram account, searched for people with endometriosis, and suddenly BAM--I had an entire community of support at my fingertips! All of them were suffering the same thing I was, and I would have strangers DM me advice and support. It's been amazing.

There are good groups on Facebook, too. Find your community. You don't have to have an official diagnosis to do that.

Along those lines...don't be ashamed of your burn mark. Please, don't. We all have scars. This hot water bottle thing is actually a pretty big problem in the endo community; one girl on my Instagram posted a picture of her stomach, completely covered in red from years of burn scars. A lot of endo people have fought drug addictions because of the temporary pain relief they bring. If you do what I did with Instagram, and admitted it to your new community, I can guarantee you, you will receive so. Much. Support.


Also, you can send me a message with any questions you have. I would be honored to answer them and help you as you seek out relief. DO NOT GIVE UP. You can make it through this. You will find relief.

I'm praying for you. xoxo

[JadeGreen17]

I've only just seen this, I gave up on this a while ago as i never got a response, so thank you so much for this! It feels so much better to know I'm not the only one, when i'm the only woman in my family with endometriosis its so hard to make them understand what its like!

I'll make a new Instagram and look for the community, although I'm not sure where I can find it on there but it sounds like a great idea.

Thank you. I didn't realise other people got the same hot water bottle problem as me.. I thought I'd gone too far with it and been an idiot. It's good to know it's not my fault.

Again, thank you so much. This really really helped me! x x