Comments on: Empowering Girls: Daughter Have a Uterus?

By: Jeanne

Jeanne — Mon, 14 Apr 2008 04:17:00 +0000

lisamm,
I’m glad you found the endo info helpful! Endo is generally very poorly understood by our society and I believe getting info like this out to the public really CAN help educate parents so that they can ensure their daughters are getting appropriate health care from well-qualified professionals in the field of endo, when that is necessary. Since this illness can have profound effects on relationships/marriages, I personally believe endo awareness should be raised (!) so that it’s comparable with MS, breast cancer, heart disease, diabetes, etc. MANY marriages in my endo support group have resulted in divorce; if husbands don’t understand the illness before marrying (chronic in nature) or if their wives don’t even get diagnosed with endo until AFTER they get married thanks to rampant delays in diagnosis, you can imagine why endo is tough on such relationships.
Jeanne

By: Jeanne

Jeanne — Mon, 14 Apr 2008 04:07:00 +0000

Violet,
You are absolutely correct that part of what makes endo so very challenging is women spend their precious energy hunting for a doctor who is highly skilled, who listens, and who doesn’t treat them like they are crazy. Certainly, many women with endo struggle with infertility and miscarriage (multiple miscarriages are common). So, yes, endo patients do have the added (often HEAVY) burden of trying to convince their health care providers that they really are sick! Our group members have been told all manner of horrific comments by doctors. It’s appalling. Fortunately, our support group can often assist women in locating the providers who are most experienced with treating endo, who respect women, and who are all-too-aware of the docs out there who say the inexcusable things to endo patients (before those patients fire those docs and find the ones who really care and have the skills to truly be helpful). You are very correct that most endo patients go to MANY docs before being either properly diagnosed or properly treated. (Some docs have just enough knowledge of endo to FEEL qualified to perform surgery on the patient and to make the endo diagnosis but that does NOT necessarily mean that the same doctor got all of the endo removed in that initial surgery (thus resulting in more surgery down the line to get what was missed). By this point, most endo patients have sought care from another doctor. Many women have both endo and fibro (plus for some unfortunate endo patients, that is just the BEGINNING of the list). The good news is that the amount of info available now is leaps and bounds better/more than what was available when my endo was diagnosed (1992). So progress is happening… just slower than I’d like.
Jeanne

By: Jeanne

Jeanne — Mon, 14 Apr 2008 03:51:00 +0000

Alicia,
I couldn’t agree more that pediatricians should be educated on endometriosis, screening for it, and educating parents about it. Obviously at the tender age of 13, I did not have a gynecologist. Unfortunately, since even finding gynecologists well-versed in endo can be tough in many parts of the country… it’s probably even trickier to find pediatricians who are properly recognizing the signs. I believe in both cases it goes back to how doctors are taught in medical school in this country.
Jeanne

By: LisaMM

LisaMM — Sun, 13 Apr 2008 00:01:00 +0000

Excellent information for mothers of daughters. thank you.

By: Alicia

Alicia — Sat, 12 Apr 2008 18:05:00 +0000

Great entry! Endometriosis is widely misunderstood or ignored. I wish parents were educated on the topic by their pediatricians.