Never too young to be diagnosed

There is a common theme occurring with endometriosis, as well as other formerly obscure illnesses, where more people are being diagnosed or younger people are being diagnosed. Or both. 

With endometriosis, it seems both. 

Since the creation of this blog, I’ve noticed a trend with more and more patients looking for a diagnosis or post-diagnosis information. Each year, more and more people are asking themselves and their doctors, “do I have endometriosis?” 

And what has started to shock me are some of the ages these patients are. A mother once e-mailed me about her newly diagnosed 12 year-old daughter! 

While sifting through my backlogged endometriosis Google feed, I discovered an article about teenagers secretly suffering with endometriosis. 

In the article, we are introduced to a teenager who began experiencing pain and it took experts at seven specialists, three different hospitals and multiple tests and procedures to find the culprit! Read the article here: Secret Suffering: Teens with Endometriosis and Baffling Pain

The article highlights the fact that endometriosis is being found in more and more younger women and is no longer an adult disease. And we should stop thinking about it that way. We must remember the ability to reproduce, and thus being susceptible for endometriosis, starts with the first period. Not when someone becomes sexually active! 

Here is an excerpt of interest from the article

Endometriosis is often perceived to be a disease of adulthood. Years ago it was cast pejoratively as “a career woman’s” condition that mostly hit older women who had delayed child-bearing. But in fact, endometriosis frequently begins in adolescence. It can be passed genetically from mothers to their daughters; there is no cure

 

THERE IS NO CURE!!! 

The teenager, Emily Hatch, also tells her story in a soundbite linked within the article. The article has some good visuals, talks about a 2004 research study, and more. 

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3 responses to “Never too young to be diagnosed

  1. Thank you for posting this. I’ve been going to doctors since the age of 13 and was told over and over again that it was ‘normal’. It wasn’t until I turned 18 and was therefore legally an adult that I was finally able to get investigated properly. When I think of all those years wasted as a teenager, being embarassed by how my body didn’t seem to be like everyone elses….It’s so important for young girls to have a voice and for doctors to listen to them!!

    • I had the same problem – “you’re too young.” Or excuses that I was just trying to get out of physical education.

  2. It is only because my mother had severe endo, that I knew what to attribute the pain to as a teenager. At the same time that the pain began (about 13 or 14), I was also undergoing the beginnings of epilepsy, so, I was in no hurry to go to a gyn. In hindsight, I am glad that I didn’t go to the doctor for an official diagnosis ONLY because I am now suffering from severe adhesions due to the endo/cysts/surgeries. For years I tried to manage the pain with ibuprofen,which did nothing for the crippling pain which in the beginning was only once a year, and eventually became every month. Infertility was the result of my endo; it was a natural birth control for me. It wasn’t until my husband and I were ready for a family that I went to the doctor to address the issue; by this time, age 33, the pain was with me almost every day. After the baby, things got worse instead of better, resulting in the inevitable hysterectomy. 3 1/2 years later (5 weeks ago), I had to have surgery again to free up the intestines, which had become “glued” to the abdominable wall (again, they were like this at the hysterectomy). They also removed the “good” ovary, which was now encased with a 3 1/2 to 4 inch endometrial cyst, damaging it to the point that I was experiencing hot flashes. Actually, I was experience hot flashes and night sweats before the hysterectomy, also.

    My daughter who is 7 1/2 ,just got her first training bra this past week. 7 1/2 seems awful young to be getting a bra, but, I think I was barely 8 or 9 when I got mine, and my menses started at 11. I look at her, and like all mothers want to protect her from all the bad things in the world. However, I fear that her worst enemy lies inside her. I participated in the Juneau study (which seeks to find a genetic marker to diagnose endo without a lap), so that hopefully a diagnosis can be obtained without the surgery that can cause the adhesions (which my mother and sister also have).

    I look at her, and while I don’t wish it on her, I feel it is nearly inevitable. My mother had it, I have it. My sister suffers from severe adhesions, but no endo, just as debilitating. I don’t mean to be a fatalist, but don’t want to ignore the possibility, either. I just want her to be aware of what her body tells her, and to have an awareness of what “normal” is and what’s “not normal” so she can learn to listen to her body, and thus to speak for herself.

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