Hi, my first time posting here!

[Serendipity_]

Hi! This is my first time posting in this group, I was recommended to come here after posting in Pain Concern. I’ll post my original post here so I don’t have to explain my situation, and sorry if this is long.

“Hi, so I'm new here. I just turned sixteen recently, but since I was roughly 12 to 13 I've had terrible on and off abdominal pain that gets worse/only really shows up during ovulation and my period. It gets so bad I have to lay on the floor and just wait it out, and it makes me throw up. It interrupts my daily life whenever my pain occurs in school and I can't stand living like this. My Mom took me to the OB/GYN when I was 14 and they did an Ultrasound; nothing. I was put on birth control and was told it should help; it didn't and my periods became somewhat irregular with random bleeding. I took it for roughly a year until I stopped. I haven't gone back in yet. My primary care doctor then referred me to a GI. My GI determined that I was constipated and we did a system flush, but it didn't work correctly so I've had at least 4 X-Rays done and we finally flushed my system for good. She told me that in 2 to 3 months my pain should stop. It didn't and my GI put me on IBS prescription pills, and it made my pain worse. We tried another brand, but it didn't really have an effect. We were desperate for results and even tried Peppermint pills as my GI said it helped with IBS. My primary care doctor had me do a blood test and everything came back normal. My GI told us that my pain could be Crohn's Disease, a form of Cancer, IBS, or H. Pylori. She said there were some other things it could be, but she didn't feel like mentioning them. My Mom is currently searching for a new GI, but regarding my Mother; I'd like to mention that she has Endometriosis. I don't think it's important though considering if I had it, it probably would've showed on the Ultrasound. I'm sorry this is so long, I just feel so lost and I can't find a place to talk about this. Does anyone have any ideas or anything? Places to talk about this if I'm not in the right place, anything please?“

And here is my update: my doctors still can’t tell me anything and they haven’t done anything to even check for anything, but I’ve noticed that my pain comes in phases now, like every few months it’ll be horrific and then sometimes it only makes me curl up and cry for a week or so. More importantly and why I’m really posting, is it normal to have a general feeling of illness with these conditions. Like, I honestly get so overwhelmed by the most random things like lights and stuff or I’ll wake up and feel awful and it’ll last for a month. I’ve also had this strange thing occurring these last couple of months where randomly my legs will turn all splotchy and get painful pins and needles. I have a very hard time standing when it’s like this and I have to sit down for awhile for it to stop. I’m sorry if I shouldn’t be posting here or anything, I just, I’d really like some advice on this stuff or some support. I just feel really lost. Thank you

[Karaj95]

Push and push for an internal camera from your local gp, write notes down, how you feel everyday, your pain management, express everything. That’s how they realised mine, was the camera and put pressure on my ovary, really hope you get what you’re looking for ❤️

[Thecraftyadder]

I'm sorry you are going through this. But the ladies here understand what it's like to have those symptoms. They say endometriosis to me and that was before I read your mother has it! It would be very unlikely for endometriosis to show on an ultrasound so it certainly shouldn't be ruled out. I've had problems since my teens and it was missed on a laparoscopy in my 20's my specialist explained than endo starts off microscopic when we are younger and an inexperienced doctor can miss it. I finally got diagnosed last year at age 37. I'd had a horrendous last couple of years in which I'd had camaras down my throat and up my bowel, numerous ultrasounds and a CT scan. It was suggested at points that I had coeliacs disease, Crohn's or appendicitis. All tests came back normal. I've been fobbed off since my teens with the IBS diagnosis. I didn't know what the symptoms of endo were or how to fight for someone to take the pain and vomitting seriously.

You and your mum must get your GP to refer you to a gynaecologist with a specialist interest in endometriosis, not a general gynaecologist. I ended up seeing on privately which cost about £180 (which isn't possible for everyone of course I just want to give you as much information on options as possible) they can give you advice and refer you back to the NHS afterwards. I understand there are clear legal (NICE) guidelines on referrals of suspected endometriosis for the UK (I don't live there anymore) which you could look at with your mum. I'm sure someone else on here will link them. Also look at the endometriosis UK website for advice on talking to your doctor.

When I was younger my pain would flare up and down but it became constant in recent years and my endometriosis had gone really deep when they found it. Don't wait 20+ years for a diagnosis like me. Your symptoms fit, you are in the right place. Get referred to the right type of gynaecologist and if your GP is difficult then see another one as you should be supported. I hope some of that was helpful /reassuring ☺️