Feeling Crazy

[MidgetSammi]

Hello my lovelies,

Just wanted to post this incase it helps anyone else that's undiagnosed & feeling like a crazy person! I've been struggling with pain for 5 years & had an ultrasound & a transvaginal ultrasound today of course it was all 'normal' same as every other test.

I had my mum with me & I just burst into tears & had a meltdown on her saying I feel like an insane person & like it's all in my head etc etc. She just looked at me and said if the doctor's thought you were lying they wouldn't be doing all these tests would they? They're probably as annoyed as you & want to find out what's going on that's why you're having so many different tests.

It really perked me up & made me feel a little less crazy & I thought I would share to hopefully help some of you feel a bit better! First Laprascopy on Monday hopefully I finally get a diagnosis

[kee_jd]

Your mum sounds brilliant 😊

And it’s common to have nothing show up on ultrasound or even MRI, even if you have severe endometriosis!

Doctors do ultrasounds to help with diagnosis, cos they’re cheaper and much easier on the patient. But the laparoscopy will give a much better picture.

I have severe endometriosis but it didn’t show up on ultrasound. They could see a cyst but not the rest. No one thought I was mad or making it up, they were just like, ‘okay, what next?’

[MidgetSammi in reply to kee_jd]

Thank you! I know all that but hearing for about the billionth time that everything's normal is so frustrating. My old gp told me there was nothing wrong me & there was nothing else they could do all they did was refer my to urology not gyne!! It took me 3 years to change gp surgery & raise my symptoms with them which has finally led to the lap on Monday!

[Hannah0091]

Hey Sammi! I have had a similar experience! You mum does sound great! I started going to my GP about 5 years ago with the pain in the end they started offering me anti depressants and anti anxiety over the years, as I think they thought That my mental health was in decline. (Which it was but because I had an undiagnosed health problem!) However they wouldn’t offer me further suggestions for the actual problem. I was genuinely starting to think It was in my head. I have been to 6 doctors 2 specialists and admitted to hospital twice. (There was a period of 17 weeks that I went to doctors every week) I used to get angry and now I just feel like there is a lot of work to do in terms of raising awareness & education. It’s not broken but something is deffo wrong! Women have to live with pain like this for years and not have a diagnosis. I have my lap next week. 💪🙌 it wasn’t untill they fiind my ovary attached to my Bowl on the scan they started listening to me properly! X

[endopositive]

Gosh your mum is great, give her a big hug and kiss from me xxx I am post Lap, also thought I was going mad, they found severe endo rectum bladder pelvis, none showed up on any tests! 1 year post op and I’m still struggling and my mum says if you think you are sick you will be sick ha ha xx

[Hidden]

It took me ten years of being told I had IBS and anxiety, stomach acids, period pain is normal etc before finding a doctor who introduced me to the possibility it might be endometriosis. I can’t offer you medical advice, but you are not alone in finding this disease very frustrating. MRI showed mine up very clearly eventually when ultrasounds showed nothing for years before.

[liliesinbloom]

Thanks for posting this! I got my diagnosis for endo and ovarian cysts 3 weeks ago. I felt like a crazy person too and was frustrated that all the tests kept coming back normal! I was convinced my lap wouldn’t find anything and was relieved when I finally knew the reason behind my chronic pain. I remember the nurse telling me they had found endo when I woke up from the anesthesia and I just burst into tears of relief. Wishing you all the best and I hope you get answers.

[MidgetSammi in reply to liliesinbloom]

I've convinced myself the lap will show nothing also I'm so used to normal results. I'm so glad you finally got your diagnosis!

[lslo23]

I finally had a doctor say to me that endo does not show up on ultrasounds! It was liberating as I've had so many say to me that as it all looked normal they didn't want to do the laparoscopy.

I had to really fight for it and when they did it last July they found I had stage 3 endo.

I think we are made to feel like it's all in our heads and the pain isn't real etc but only you know your body!

Good luck for your lap on Monday, hope you get the answers you want! xx

[MidgetSammi in reply to lslo23]

Congrats on your diagnosis! & thank you I know my next steps if it's not endo but really hoping I get a diagnosis on Monday. Must be so gratifying to finally be told there's something wrong with you!

[Jue23]

I’m currently feel like lm going crazy! Been off work since February. Feeling totally exhausted and in lots of abdominal and back pain. I’ve had CT scan as thought kidney stones as well as possible Gynae so had ultrasound nothing, have MRI end of April and am currently sat in hospital waiting to see Gastroenterology.

All l get from my husband is go to bed if your tired and my Mum no one had nothing like this before in our family. Your Mum is amazing! On a positive my daughter (16) & GP are great and the GP is doing her best to get me answers.

[MidgetSammi in reply to Jue23]

Hi Jue,

Omg I'm so glad someone else is off work! I'm at work but struggling like mad my husband wants me to give up work for a bit but I'm in a management position so giving up is such a difficult decision! & with no diagnosis I feel like I should be at work! Just waiting it out until Monday to see what happens at my lap & will make a decision from there Good luck with your gastro! That's one of my next steps if the lap is clear.