Diagnosing Endo

[Popetta]

Dear readers,

I am currently going through the early stages of diagnosis and, given the complex nature of my case, I have also been recommended to go see a gastro specialist.

Yesterday I had my ultrasound at a specialist gynae ultrasound centre (have had several in the past but none as detailed and with actual results delivered to the patient before! bonus!).

I knew beforehand that I wasn't going to get the answers I needed, and everything was fine, no visible signs of endo or adhesions, though that's not to say I may not have some superficial endo (can only be detected via laparoscopy).

So my next step is to see the gastro specialist in two weeks' time.

In the meantime I continue in agonising pain (today is a really bad day and no painkillers work) incapacitated in many ways and still with a big question mark as to what the hell is causing me all my pain and related symptoms.

Have any of you had an experience in which even with specialist doctors and a laparoscopy, they have not been able to detect visible signs of endometriosis???

Grateful for your feedback.

[Maxi72]

Hi

I understand your frustration. My situation is complex too due to unexplained motor nerve damage in my leg. My ultrasounds and MRIs were all clear (MRI is more sensitive to detect endo than ultrasound) but they found stage 1 endometriosis and possibly adenomyosis during my lap and the endo was excised. The stage denotes it’s effect on your fertility alone but has no relationship to the severity of pain or the other symptoms it can cause. Alrhough the lower the stage the less chance it will be detected by a scan. After my MRI found nothing I asked a similar question on here and had responses from others saying the same- endo found on lap despite a negative scan. I am 2 weeks post lap but I can tell a difference already so I hope you get a laparoscopy soon and start to feel better too. X

[Popetta in reply to Maxi72]

Hello Maxi72,

Thank you for your reply. This has helped restore my faith back somehow, as my aim is still to go ahead with a laparoscopy if offered by my gynae.

[JOSANDY40]

Like with other autoimmune illness sometimes it's a while before they know. Crohns also is often missed. Have you got a inflammation marker on blood tests? J x

[Popetta in reply to JOSANDY40]

Hello JOSANDY40,

Thank you for your response.

I had a test done about 2 years ago to rule out Crohns & Ulcerative Colitis, a colonoscopy about 1.5 years ago plus blood analytics and stool tests and all test results came back as normal.

However, saying that, they were done via NHS so there could be an element of error (as I have unfortunately also experienced before).

They didn't even bother doing other tests such as endoscopy, SIBO testing, etc. so I guess all I can do at this point is wait until I see the privately referred Gastro Specialist.

Best,