Doctors don't always know everything - misdiagnosed hernia - Spontaneous Umbilical Endo relapses

[Tilozherely]

Hello ladies,

I've been reading through all your stories and can report experiencing much the same. I'm a mom of 3 girls, had a LLETZ in 2007 for cervical CIN4 and was misdiagnosed with an umbilical hernia in 2014. The supposed hernia went from being a mere moderate pain with no lumps, UltSound showed up nothing in the scan, in the umbilicus area to a protruding lump that was 2 cms in diameter on my belly button which swelled and turned reddish purple during menstruation. I changed GPs 2016 and presented to him during my period with a weeping so-called 'hernia' - I had done the research online, and took printed information just in case he didn't believe me. Turned out he was pretty great - he took one look and said, that's Endo. Sent me for another UltSound scan, of course, the Sonographer could not tell what it was and said he had never seen anything like it before. But he did the scan, sent the results to my GP, and I had surgery a week later to excise the mass. Lab testing returned positive results for Endo. Three weeks later I had the pain return, I went back to GP, and sure enough, it had grown back, but this time underneath the belly button and not protruding. I had to move 120km north so had to change GPs, fortunately found one who was also brilliant. He took the previous scans and got new UltSound. That Sonographer also said they had never seen anything like and didn't know what it was. Results sent to GP - another surgery performed 2 weeks later following a meeting with the surgeon. He 'shelled' out the area beneath my umbilical, repaired a tiny tear in my umbilical wall, and remove 3 'superficial' (small) Endo lumps. I had pain present again 7 weeks later, another UltSound with same Sonographer (on my request so I didn't have to explain things again) and sure enough, more superficial lesions were apparent in the scar tissue. She did tell me that they often hide in scar tissue and are missed during scans almost 90% of the time unless it is larger. It's been 7 mths now and I have had pain ever since - I've had to relocate again which was another change of GP - and she was recommended to me by others who had endo and got hysto done. I want to get the hysto, but this Dr did the scans and as I had a different Sonographer they wrote back that there is dark tissue there but could just be scar tissue the 2 surgeries... Hormone test was normal etc. She had the nerve to tell me that nothing was evident and that the pain is sympathetic, which it isn't... I had a pelvic scan done, still doesn't show any signs of endo down there - but instead they found a 'Bulky Uterus'.

GP's referred me to a Gyno. Hopefully better luck there. I am sensitive to hormones so refuse to take contraceptives or the like as it makes me get acne and become very obese. I am already 30kgs overweight since first diagnosed with Endo.

For all those with symptoms and horrible GPs telling you that its nothing or not apparent, print and take these in with you... or seek a second opinion. Taking in the information from medical journals made all the difference for others who have Endo symptoms:

ncbi.nlm.nih.gov/pmc/articl...

sciencedirect.com/science/a...

Hope this helps others like us to get better health care.

[Mary-intussuception]

Thank you for sharing your experience. xx

[Sway72]

Thank you for your story. I haven’t been diagnosed yet. But believe that this is what’s been going on with me for the past 2 weeks. Endometriosis issues. But I do have a good GYN Dr. she believes that could be my problem also. But I still have to see a GI to rule out ulcers or gastritis. I also have had vag. ultrasound, gallbladder ultrasound, CT scan, HIDA scan ad X-ray. All came back normal for gallbladder issues. An hysterectomy will be my next step if all GI test come back normal.

[Tilozherely in reply to Sway72]

I've had the Trans Vag scan too last week, and a whole bunch of blood test etc... all come back normal - except the scar tissues in the Umbilical and the Bulky Uterus. I want the hysto, but am being sent around in circles. I've been informed they prefer me to go on Endep for the pain - which my research says will mess you up energy wise and weight... and also the suppressants to go into pseudo menopause... Not my idea of fun! Am hoping new Dr and Fyno will be more accommodating like my last 2 Dr's were - this new one is just twisting it her own way - lots of drug therapy suggestions but not listening to my histology and sensitivities - in fact, she told me outright that I over research things and that in doing so I am contradicting her solutions. Hmmm! What does that reveal then?

Hope all goes well with your appointments and you receive a positive outcome, whichever way that may go! A life without pain and discomfort is better than one with - and loads of struggle. All the best.

[Sway72]

That’s what makes me mad about some doctors. It’s your body, you know more about your own body than they would. I really hope everything goes well and you get your hysto as well.