Lost

[Ceryspalmer]

I'm 16 and currently after 4 long years of pain I'm finally being tested for endometriosis. As I get older the worse I seem to get. I'm almost certain I have endometriosis. No one around me understands, so I feel lost. I joined this for some support and maybe someone to speak to. Thank you

[Starry]

Welcome ! What test are you having? An ultrasound , MRI or a laparoscopy?

[Ceryspalmer in reply to Starry]

I've had an ultrasound before but that showed nothing, I'm not sure what will be done in my gyno appointment in January. My nurse is convinced aswell I have this condition, she said that an ultrasound will only show cysts on my ovaries. So really I felt that was partially a waste. It's so annoying because I'm always in pain and the doctors just give me painkillers that don't even help, feels like I'm stuck at a dead end

[Starry in reply to Ceryspalmer]

Were here for you, and it sounds like people are starting to listen to you now x

Well, i wouldnt write a u/s off, though it does depend on the skill and endo experience of the radiologist . They do rule out worse conditions like cancer. As it happened my ovary cysts found on my internal u/s were found to be endometriotic in my laparoscopy and though small had glued my ovaries to my abdomen. Had I not had the scan my surgeon wouldn't have known they might burst.

The gold diagnostic standard is a laparoscopy but that is usually only done after trying hormonal treatments and seeing that haven't worked for a few months as it is an operation. surgery can of itself cause scarring and exacerbate endo so is not something to dive into immediately if it can be avoided or delayed, especially if you are still quite young.

A good overview of hormonal and surgeryoptions is here, it's well worth asking your gp to refer you to a bsge centre if that isn't where this scan is being done.

endometriosis.org/treatments/

[daffyduck92]

I am so happy for you to get the ball rolling at this age & finally drs are aware that it happens at any age! read my recent blog, i was very very young when i experienced my pain and it took them such a long time! Im always here if you need advice or support!

ox

[Hidden]

I'm 15 and I've been through similar things for 4 years two I've had so many pain killers and multiple pills and also a clear ultra sound. I'm now having a laparoscopy in the next couple of weeks. Has your case for any further?

[Ceryspalmer in reply to Hidden]

Hiya! I had a gyno appointment the other week, and he said he wants me to wait till I'm older for a laparoscopy. He's told me to have the Mirena coil for now. However when I tried to make an appointment my doctor said because I'm so young he doesn't wanna do it himself so he's gonna refer back to the gyno for it. I know it's a step but I just feel like I'm going round in circles, I just want something to actually happen. It's easy for doctors and gynos to tell me to wait because they don't experience this pain, round in circles for four years now. All this stress is making a huge impact on my mental health.

Hope all is well with you

[Hidden in reply to Ceryspalmer]

all this stress won't help your gyne problems either they'll just get worse. And the coil might work but is it something you want to be on permanently. It took me so long to even get an ultrasound so I know how frustrating it is and no one seems to understand how bad it is because Most GPs say so many times "you'll grow out of it" and it's so frustrating to be put down so many times just because of my age doesn't mean I can't get the same conditions as Everyone else

[Soph1990]

First of all It's so good that you have started on this path early.

It doesnt matter that you are this young, you know your body, you know when you are in pain and the NHS has to treat you seriously!

I personally wouldn't get a coil until you have had a lap and determined what's causing the pain, if you have endo and how bad it is and if it can be removed and how.

When I was 18 they wanted to fit me with a coil and I refused and demanded a lap. Which is when they found and removed endo.

We are all in this together so never ever feel alone.

Xx

[Ceryspalmer]

Sorry for the late reply, my life's been so busy at the moment. But thank you all for replying to me it honestly means so much and I'm glad to know that people understand what I'm going through. Thank you xxx