HELP!: I fed as though I’m banging my head... - Endometriosis UK

Endometriosis UK

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Daisy0909 profile image
12 Replies

I fed as though I’m banging my head up against a brick wall!

I’m feeling so frustrated by medical professionals, the ones who fob you off with

“your scans clear and your bloods are normal”

“everything looks reassuring”

Ok, but my scan isn’t clear and I’m not making up my symptoms. I left my scan yesterday feeling validated only to be knocked back again by the person who is supposed to be my specialist.

I’m awaiting biopsy results too after a hysteroscopy and can’t help but wonder if there is something sinister as my lining is still abnormally thick even after my period

I just feel like giving up, if this is how the rest of my life is going to be then I don’t want to be here anymore! I can’t carry on with the pain, it is affecting every aspect of my life, it has taken away my chance to be a mum and it is slowly destroying my career. I have nothing left!

12 Replies
Endosufferer1 profile image

A PET scan could detect more easily cancer. Endometriosis rarely shows up on any types of scans (unless you've got cysts).

Adnalim profile image

I had a similar experience with a really well known Gynaecologist. I was absolutely gutted when she told me nothing was wrong with me after seeing my MRI and discharged me with a IBS diagnosis. I cried to her and she still didn't listen, she didn't ever even do a physical.

I was left to deal with the pain for over a year, but keep going. I just had a Laparoscopy and been diagnosed with Stage 4. In a weird relief type phase at the moment, because I knew I was right. If no one is listening to you ask to be referred. Hope you get help soon!

eunha profile image
eunha in reply to Adnalim


Daisy0909 profile image
Daisy0909 in reply to Adnalim

Thank you, I’m sorry to hear that you’ve experienced similar but hopefully things will start falling into place now that you have had your surgery and diagnosis. It’s definitely a rollercoaster ride!

I’m under a BSGE specialist, my scan was undertaken when I was admitted into hospital for severe pain and bleeding. I have an appointment with my specialist in July which I’m trying to get it expedited

me94 profile image

Sorry to hear you had a bad experience. I recently had the same experience with a endo specialist I had adhesions shown on mri scan with sigmiod attached to uterus and ultrasound scan showed left ovary stuck to uterus and both ovaries not mobile. I had a dignostic lap by general gynae nov which showed endo hut wasn't removed so this is why I got reffered to endo specialist. I felt like he was very dismissive and didn't explain anything. I said my scans showed adhesions he did to ignore the scans as adhesions wasn't seen on my lap but the scans were few months post lap it came across to me that he doesn't think I have adhesions. I'm new yo endo so don't know much about it but I've read that endo can cause adhesions but then so can surgery so I'm confused

Daisy0909 profile image
Daisy0909 in reply to me94

hi there, yes it is common to get adhesions from endometriosis and surgery due to scarring. I get pulling sensations in my pelvis which I suspect are adhesions. I’m sorry that you’ve been through difficulties too, I just wish they would listen to us and believe us.

me94 profile image
me94 in reply to Daisy0909

Yeah true it could be. Me too consultants and doctors need to be more compassionate as it makes us feel like we are not being heard. Really hope you get things sorted soon

Starry1977 profile image

Hi my lining is always thick as well. I've had 2 biopsies both came back clear. However an MRI showed signs of admenosys so I'm assuming now it's related to that.

Daisy0909 profile image
Daisy0909 in reply to Starry1977

that has been mentioned to me too, I suppose I’ve just got to wait until I get the results, it just takes so long!

Slinks profile image

I feel your pain. Its taken me 3 years for them to listen after being fobbed off by GPS. Now they just keep throwing various tablets at me which don't work. Luckily I'm older and have kids but I have no life currently and can't work and also feel like I dont want to be here at times. Its so shit. Even after my scam that I've since found out suggested adenomyosis there was no mention of it during my last consultation its a joke

Daisy0909 profile image
Daisy0909 in reply to Slinks

I really do get how you feel, it feels as though you’re better off not being here! It is really awful and makes you feel as if you’re going mad.

stay strong and keep fighting!

eunha profile image

My sis and I had to deal with the same thing ❤️ All our scans came back clear and whatnot but my sis' lining was a little thick. Even our laps looked pretty 'normal' but my sis had an AMAZING doc who knew to cut anyway and came back with positive endo diagnosis. I on the other hand despite having a top specialist did not get a positive diagnosis. But we both had partial hysterectomies and don't regret it one bit because it helped so so much.

Note-- There is still much about this disease that is not understood and it can be difficult to recognize/see even by top specialists.

Not doing an exam, red flag. My sisters awesome doc did her own ultrasound and her own exam and saw how much pain my sis was in on the exam. Shanti Mohling in Portland, Oregon is the Best!

Don't give up. Trust what you know about your body. And keep looking for a good doctor-- they're hard to find and we have to suffer through traumatizing experiences with bad docs in our search for them, but they are out there ❤️

I hope you get the help you need ❤️❤️❤️

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