Frustrated

[Kfaiza1999]

I've been having severe pelvic pain for several years with the common endometriosis symptoms alongside it, my gp has been amazing with referring me to have ultrasound and be seen by a gyno. I feel that when I described my symptoms to the gyno I may have missed some out or downplayed them 😪 I've had a Mri scan which hopefully shows something as the ultrasound didn't show anything. I'm frustrated to what to do next as I'm only 17 and can't bear this pain anymore. Thanks to any replies x

[Susybee]

Hello, it can be difficult to remember all the symptoms on the spot and I find it difficult to express how painful it is too so get the downplaying bit. I always think people see you sitting and walking around but they have no idea how much pain yr in or how tough it is to carry on normal life to distract yourself. Maybe make a list of all symptoms and patterns you notice of pain especially around cycle time and take that when you go back to review the MRI scan results (or ask for another appointment if needed) try and not to be put off, you deserve to be listened to and helped. Sometimes you don't see a pain pattern until you write it down as you go so keep a notebook handy to jot down too maybe. Good luck & wish you well

[Tboag]

Good advice by Susybee , defo write things down and show consultant,

And be aware that endo can be hard to detect by scans, so if nothing comes back on MRI, dont me disgust by consultant, the only way to diagnose endometreosis clearly is by having a laparoscopy,

Good luck, and ask any questions on here, knowledge is power when it comes to endo,

[Marcia71]

I agree that writing things down can help. Also focssuing in what has changed and how you've adapted things can help show the extent of how your pain is affecting your life. For example I can no longer exercise as it's so painful and before all this started I was a keen exerciser and even ran a marathon! Telling people that often makes them listen.

As to MRI it doesn't always show up endo. It needs to be done by specially trained people. Are you seeing a BSGE clinic? If not a general gynae may miss things. Look for Lindles posts on here about treatment pathways. Also Lindle has started a new Facebook group called endo revisited that may help you as you can chat about hospitals and surgeons on there.

Good luck and remember you aren't alone. We're all here to help.

[Kfaiza1999 in reply to Marcia71]

I'm being seen by a normal gynae in st Mary's hospital x

[missymo]

Burning pelvis stomache& vaginal pain today!! Hope to god it wears off a bit later today!! Feeling miserable as hell!! Good luck girlies!! Xx

[happyseal]

Try to have a journal where you write down all your sympotms and how often it happens. This will help you to be more accurate when you talk with your doctor. Write down everything you feel that isn't normal, as bloated, pains, etc. as well as have a look how your body reacts after eating certain things... for example wheat usually makes me really sick and I can't have it. It helps a lot to even just cut wheat.

[NS2408]

Hi,

I know that feeling of walking out of a Gyno appointment and thinking "oh I didn't mention this, this and this". I find that having someone else there that you have already discussed your issues with can help as they can prompt you to say something you have forgotten or explain that it actually much worse than you are describing in the appointment. I sent my Gyno an email after my appointment where we decided I should have a lap as I felt I hadn't explained it all well and had missed things. He thanked me for the extra information and understood that you might come out of an appointment feeling confused and anxious you forgot things. I hope this helps.

[Kfaiza1999]

Thank you so much ladies for replying as sometimes it can feel like your going through it alone x hope everyone has a good day I'll let you guys know the outcome of the mri scan and will try to start the symptoms journey! X