Endochick had posted on her blog, Endometriosis: the silent life sentence, quite awhile ago in regards to the importance of diagnosis when you take into account all the various illnesses that can mimic the symptoms of endometriosis. In this case, Endochick had spoken of how her sister was suspected to have endometriosis but was actually diagnosed with cervical cancer. Not only does cervical cancer have similar symptoms as endo, but so do other gynaecological cancers (I have endometrial cancer and the symptoms are very similar, but ovarian cancer would also have similar signs. Other illnesses that have similar symptoms but different treatments would be pelvic adhesions, pelvic congestion syndrome, Poly-Cystic Ovarian Syndrome, and Interstitial Cystitis to name a few. Thus a diagnosis of endo is necessary in order to rule out other conditions and to receive the proper treatment.
The diagnosis of endo was very reassuring to me. It meant that after 10 years of being told that the pain was "more or less in my head" since no diagnostic imaging tests or bloodwork had ever shown anything of significance, that I was not making it all up and that there really was something wrong with me. If doctors had their way I'm sure I would have stopped complaining and given up years before this.
In my years of running the online support group, I have met several women who have been treated without a confirmed diagnosis of endo. A few of these women have been treated with the "harsher" endo treatments, including Lupron. I keep asking myself why on earth a doctor would recommend a chemotherapy agent to a patient without first having a confirmed diagnosis of something. I haven't yet arrived at any good explanations for this one. After all, if some of these treatments have very strong side effects which can last for years post-treatment, shouldn't there be a clear reason to take them?
Having a diagnosis is empowering to a woman. It means that the woman can begin to educate herself on the various aspects of the disease and can work alongside their doctor to come up with the best treatment option that suits them. I can't stress this last point enough, far too often women will blindly accept the "doctor knows best" philosophy of society. While yes, a doctor's opinion should always be considered for what it is, it's also important that it agrees with what the woman wants and desires. If a woman wants to try other options other than a hysterectomy, she deserves to have the other options presented to her and be supported in her decision. The knowledge that comes along with knowing how advanced your condition is, will also help you to plan which treatments you might be willing to try.
The diagnosis can seem overwhelming, after all it is life changing to finally be diagnosed with an illness that will last the rest of your life, but hopefully after reading this those who think that they may have this illness will rest assured that it will make their life a bit easier in the end just to know. Power seems to come with knowing in this case.
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7 comments:
The first doctor I went to diagnosed me with a UTI. He would not listen, even the doctors in the ER were unwilling to listen. I started to feel like I was crazy. My gyno. thankfully stepped in and sent me to a pelvic pain doctor. After meeting with him and having my first lap. surgery I was officially diagnosed with endometriosis and interstitial cystitis. I am glad that I did not listen to the first doctor and even though everyone I went to thought I was crazy, I knew something was not right with my body!
Thank you for this - it needs to be said again and again, on all the endo forums out there, and in the media. Thank you so much!
Yes, we need proper diagnoses. This diagnosis getting too causual as if it were the common cold.
You are absolutely right! My first doctor wanted me to take Lupron without doing a lap. I had to insist on the lap - but the joke was on me, as she failed to recognize the endo when she was doing my surgery.
Not only is it important to get a diagnosis, but it is also important to get a competent, experienced endometriosis specialist.
Having a diagnosis is empowering to a woman. It means that the woman can begin to educate herself on the various aspects of the disease and can work alongside their doctor to come up with the best treatment option that suits them
I couldn't agree more with this. Not that it takes the pain away, but it helps knowing what it is that I have and can do research with my doctor finding what is best for me in terms of treatment. Well said!
Melissa,
Ditto to everything you said. Proper diagnosis is SO important!!
When I was diagnosed at 23 after 10 years of struggling with something that didn't have a name, it was a relief because I finally knew WHAT I was dealing with and it was validating!
I knew it was never in my head but now I had a name for it for others in the world to hopefully get a clue.
Then, of course, it's a whole lot easier to be treated for an illness once you know what that illness is!
Great post!
Jeanne
P.S. DITTO to Ali's point... that finding a highly skilled surgeon who is experienced with endometriosis is key!! Not all doctors are created equal when it comes to recognizing and removing endometriosis!!
I couldn't believe the mental change I felt when I was finally diagnosed. I suffered from pain for six months before diagnosis, and I know that is short compared to some women. My primary care physician said that "one day, you'll wake up and the pain will just be gone," as though it wasn't a sign of something wrong with my body!
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