May 17, 2018
We live in a WebMD world. It’s cheaper, easier, and more convenient to google our symptoms. Unfortunately, we also live in a world where it’s cheaper, easier, and more convenient for doctors to throw medicine at our symptoms than to actually pinpoint the source of the problem. It is your doctor’s job to diagnose you when you go to them – but it is your responsibility to advocate for yourself and demand a certain quality of care.
I used to be of the mindset that I would deal with physical problems when they got bad enough to land me in the hospital. This is why I spent a week in the hospital for a ruptured appendix instead of one day for a routine appendectomy. I came out of that okay…until I learned last year that the adhesions from that surgery actually facilitated the growth and spread of my endo. Now I’m pretty mad at my 12-year-old self for not speaking up sooner.
To get the proper treatment, you have to start with a proper diagnosis. This is just as much the case for endometriosis as it is for any other disease – despite what your OB/GYN might imply.
See More: https://topendodoc.com/2017/11/20/blog-8-what-are-the-consequences-of-delaying-the-diagnosis-of-endometriosis/
Why the delay?
The invasive nature of the required diagnostic surgery.
Most doctors will begin with a pelvic exam and some imaging tests, such as an ultrasound or MRI, but it is important to note that these can only rule out other causes. Laporoscopic surgery is the only proven and viable method to detect and diagnose the disease. Because surgery seems extreme, many doctors and patients choose to forgo it and instead treat it blindly – or ignore it altogether.
Endo mimics several other conditions.
Oftentimes, women don’t even realize their problem is gynecological in the first place. My friend, Mandi, writes in her endo blog about seeing a physical therapist for back pain, a gastroenterologist for stomach issues, and a fertility doctor for infertility – but none of the doctors connected the dots to realize that endometriosis was the cause of all three problems!
This is super common in endo patients, especially with symptoms that don’t seem gynecological on the surface.Unfortunately, many patients are simply told “there’s nothing wrong with you” and sent home – or to a mental health provider – before finding an answer to the cause of their very. real. pain.
A lack of knowledge in the medical field.
Unfortunately, endometriosis is simply not understood by many practitioners – even gynecologists. They are not caught up on the latest research and still adhere to old standards they first learned in medical school, despite the improving and evolving research and progress in treatment options.
I know of several young women who know something is wrong, but haven’t gotten a diagnosis because they don’t want to go to the gynecologist. I get it – it’s awkward, especially on your first trip, and you want to delay it as long as possible. But I’m here to tell you that it’s only weird to you and you have the choice to let go of those nerves. We can talk all day about how the health system is failing us along the way, but the first step is your responsibility and yours alone.
It’s a “woman” thing.
I’ll try not to get on a soapbox here, but simply put – one of the biggest barriers to endometriosis patients is that it only affects half the population. The female half, to be exact. I personally believe that if endo affected men’s ability to go to work and enjoy sex, we would have a cure by now..and maybe declare a national state of emergency. Unfortunately, women are often told to “just have a baby” or are treated like hypochondriacs. (Personal experience talking here.)
My Diagnosis Journey:
As I mentioned in my last blog, I dealt with my symptoms for about three years before seeking medical attention. I only did so then because I was engaged and it was finally “time” to see a gynecologist. (Pst..it was actually past time – you should really go sooner, especially if you have pain.) The first doctor I went to simply nodded when I told her I had painful periods and gave me an array of birth control to pick from. There were no further questions or discussions about why my periods were painful or whether I wanted to explore a diagnosis. I didn’t know any better, so I picked the IUD because it seemed simple enough.
Diagnostic Lap #1:
The pain and symptoms got worse and I started doing my own research at home. I kept seeing information about surgery come up and I asked my doctor if that was something they could do. I was hesitant because I had learned a lot about the importance of using an excision specialist, but I knew I couldn’t afford to go to one. The surgeon at my practice sat and talked with me and agreed to do a diagnostic laparoscopy and excise whatever he could. We picked a date and less than a month later, I was driving to the hospital for an outpatient procedure.
A Thorough Diagnosis:
They also diagnosed me with adenomyosis, interstitial cysitis, and pelvic floor dysfunction, arming me with more information and power to take better control of my health.
See my previous Endo posts here:
–Intro to Endo
–Part One: Symptoms
Want to talk endo? I love to hear and share stories with my fellow endo-sisters! Leave a comment or email me at firstname.lastname@example.org! You can also follow me on Instagram @jennahuckabysimmons.
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