Chronic Illness & Endometriosis Health

Another Day: The Continued Journey to Diagnosis

Another day without answers. The doctor today was blunt. He walked in, asked what seemed to be the bother and then told me what was wrong with gynecologists:

They do not like to do surgeries, so they send you to us so they can try to blame me.

– Unnamed Physician, M.D.

I told him I was certain my pain was endometriosis and that I wanted a laparoscopy to confirm. He said he would order two tests that my doctor, who is apparently his friend and patient, would require to come back negative to then allow me to get the laparoscopy. So, I have two more tests to schedule before I go back to the gynecologist to move forward with seeing if I can schedule this surgery. I just want relief.

cantstandThe pain today was excruciating. I did not want to get out of bed. I did not want to go to work. The idea of taking a leave crossed my mind. Until I realized that there’s no way to take a leave from the rest of you life. Why isn’t mental health leave a thing?  I need a day or week to get my mental health in order, okay?

My fatigue is getting worse. I do not think i am sleeping. My dreams are all over the place when I do. My emotions are a roller coaster. I’m literally a roller coaster of emotions.  How can the doc not believe me? How can he not know that I know there is something SERIOUSLY WRONG with my body?

As I am exploring the chronic pain and endometriosis community, I am learning that I am not alone, and my story is not unique. This realization does not make me comforted. It terrifies me. It saddens me. It angers me.  Why is there not research being done to find relief… a cure? If there is research being done, why is it not publicized?  Why is there not more awareness for this disease? Is there a reason why more people do not know what endometriosis is? What about chronic pain?  Not everyone is making it up… Not everyone is trying to get a check … Not everyone is gaming the system.

There is a real problem here. People need to be made aware of endometriosis. Somehow, someway, I am going to do my part to make sure it happens.

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5 Comment

  1. Yes, unfortunately this is the world of endometriosis. It sucks, doesn’t it? Just out of curiosity, what tests did your doctor order? No blood tests or scans can detect endo…
    I hope you find some relief soon! I don’t know how much you know about endo, but the best chance you have for relief is excision surgery, which only a handful of surgeons are capable of performing. Let me know if you want to learn more about it; I underwent this journey two years ago and my earliest blog posts are all about it.
    *gentle endo hugs*💛

    1. Thank you… so far it’s been CT scans, ultrasounds and blood tests. I asked for a laparoscopy, but the gyno wants to “rule everything out first”. Even though I was diagnosed before.

      Is excision surgery different from a laparscopy? This go around I am older and the pain is worse, so I feel like I am learning everything for the first time, especially since I’m married and considering children in the near future. I appreciate all the support I’ve received so far <3

      1. Excision is a type of surgery performed via laparoscopy. The vast majority of endo surgeries are ablations, where the surgeon burns off the top of the lesions, but this process has a 40-100% failure rate because there are cells left behind that just regrow. Excision can be likened to removing cancer; the surgeon goes around and under the lesions leaving clear margins to remove ALL endo cells and the chance of recurrence is in the 10-20% range. It takes a highly skilled surgeon to perform excision and be able to recognize endo in all its various forms. If you want to know more about it, I encourage you to read a few blog posts of mine, starting with this one: https://ribbonrx.com/2016/07/01/you-have-what-in-your-where/?iframe=true&theme_preview=true
        It’s a 3-parter with links to continue reading. I think it might make things a bit more clear!🙂

  2. Sorry, I also meant to tell you that there are some great support and information groups on Facebook! For correct information, the best groups are Nancy’s Nook and Endometropolis. There are many other support groups depending on where you live.💛

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