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What to do when I think I have endometriosis but doctor won’t evaluate further?

I have been having strange symptoms for a while now. From recurrent yeast infections to now very sharp pinpoint cramps mostly in one spot on the right pelvic region. It has radiated to the left as well. I have bloating, gas, some minor back pain. Some mild rib cramps, tender when I press down on stomach. Right hip pain, feels muscular. Sometimes feels like it shoots to my inner thigh. It’s gotten worse the last 2 months. I thought kidney stones since I had them before.

I think my mother had endometriosis undiagnosed because she had awful periods where she had to miss school. I was lucky enough I never had that issue. My periods were always regular and occasionally day 1 could be painful but nothing some ibuprofen can’t fix. My gynecologist said she doesn’t suspect endometriosis, since my ultrasound didn’t show chocolate cysts, it deep scarring. I just feel off and am having a hard time accepting everything is fine. My pain is mild but annoying. It’s not excruciating. I’m just worried the only way to have someone take you seriously is to either be in excruciating pain, or have issues conceiving. I don’t know what to do. Wait and see?

  1. Hello , thanks for reaching out. The issue is that most ultrasounds and other imaging tests won’t show endometriosis adhesions, as these can occur at deeper levels, or be hidden behind other organs. So unless you get a laparoscopy there is no certain way of knowing whether you have if for sure.

    I’ve had doctors dismiss my symptoms over and over, and it took me finding one that listened and agreed that maybe it could be endometriosis. This is why, sadly, this disease takes so long to diagnose. Would it be possible for you to speak to a different doctor? – Jessie (team member)

    1. Jessie thank you for Responding.

      I do know the only way to diagnose it is laparoscopy and that’s also a worry. Surgery freaks me out. Yet if I really needed to of course I would. I almost feel since my pain isn’t excruciating or debilitating or I since I Haven’t tried for a year to have a child. It almost seems like it could seem excessive to a doctor and I’m sure really expensive. It really sucks since me and my husband just decided to try and now I feel like I’m worried about fertility if I do have this condition. I’m considering going to a endometriosis specialist. I don’t think another gynecologist would be the answer unless they specified in endometriosis.

      I saw the UK is coming out with a blood test that could test for this condition without invasive surgery. If only it was on the market and available in the US. They are still working on it unfortunately.

      1. - I just wanted to check in and see how you were doing! Have you found a new doctor since your last post? If not, I definitely recommend reaching out to an endometriosis specialist. Like Jessie said, the hard thing is, most imaging scans do not show anything. For so long, doctors kept telling me it was nothing and that I was fine, because my blood work and scans kept coming back clear! So I just kept changing doctors until one would listen to me and perform the surgery! Hoping since you last posted, you were able to find a doctor. Do keep us updated if you can! -Kimberli (team member)

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