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Friday, April 11, 2008

Empowering Girls: Daughter Have a Uterus?

Perhaps you noticed that your daughter has both a vagina and a uterus when she was born?

Oddly, this causes discomfort in some parents.

I admit to some discomfort in myself when I deal with rashes, itchy or irritation in the general area. As our daughters get older the issues surrounding their feminine organs and parts becomes more complicated. As far as parental discomfort regarding these reproductive issues - it's time to get over it.

Jeanne Connor Dessert has suffered from endometriosis since she was a young teenager. She currently runs a support group for women with endometriosis and she has some fantastic advice to parents of daughters.

I’m 39 years old and my endometriosis symptoms began at age 13. I was not properly diagnosed, however, until the age of 23.

I would like to make all parents of girls out there aware that endometriosis is a serious illness and that symptoms should not be overlooked, marginalized, or viewed as “in a girl’s head”.

Endometriosis is a very real illness that affects an estimated 80 million patients worldwide. Society has taught women and girls that menstrual pain is “normal”. It is not. Endo has a wide variety of symptoms. Cramps are just one of a great many. click on Endometriosis Association “what is it?” for a complete list of symptoms.

The important point I’d like to make is that if you think there’s any chance your daughter is having endo symptoms… I urge you to take it seriously, have her seen by a highly skilled gynecologist highly trained in recognizing and surgically removing endometriosis, and advocate for your daughter. This illness can cause pain (sometimes debilitatating and disabling), infertility, less commonly it can cause bowel obstruction. The list goes on. Endo patients are also at an increased risk for ovarian cancer, melanoma, and breast cancer.

If you have endo in your family (which some people do have family history without even knowing it due to societal “taboos” regarding talking about reproductive organs and menstruation), then your daughter has a higher risk of developing endo. I urge parents to learn the basics about endo. If your daughter has it, you want to be proactive, have her see a properly qualified gynecologist, and not ignore her symptoms. Empower your girls to obtain appropriate health care and not be cast aside by a health care system that isn’t doing all it should for endo patients.

Also, the research dollars for endo have historically been far too limited and I do not think this is an accident. Since this illness affects women and girls, the research dollars are just not as available for it as they would be for an illness affecting both genders.

7 comments:

Jeanne said...

I'm thrilled that Tracee has posted this information about endometriosis. As an endometriosis support group co-leader, I hear stories from new members all the time about not getting diagnosed early. The average diagnosis of endo is 9.9 years AFTER the onset of symptoms. Part of this is definitely linked to society's "taboo" syndrome regarding discussing body parts and their functions, especially those related to the reproductive system. Part of the delay in diagnosis is that there is not enough training, in general, of gynecologists regarding endometriosis (which obviously puts women and girls with endo in a very tricky position). Part of the delay is that endo can't be diagnosed by something as straightforward as a blood test. It's diagnosed by surgery (laparoscopy). The danger of delaying diagnosis is that endo growing rampant inside the girl/woman can later lead to infertility and may also cause pain (debilitating pain in some cases). Endo is also correlated in studies to numerous other illnesses (i.e. interstitial cystitis, fibromyalgia, and irritable bowel syndrome are just a few). Endo can also increase the risk for certain cancers. So if you have ANY suspicion that you or your daughter (or anyone you love) may have endometriosis, please seek the best medical attention you can find. Endometriosis symptoms vary from person to person and some patients have relatively mild symptoms BUT other patients have severe and/or frequent symptoms. In some cases, endo can be disabling. I urge parents to take any symptoms that might be caused by endo seriously. This illness is often misdiagnosed or diagnosed many years after it starts. This can affect endo patients' careers, relationships, education, self-esteem, and predisposition for other potentially disabling conditions. In North America alone, at least 5.5 million women and girls have endo. As Tracee said, the number is 80 million worldwide. The chances are good that you know someone who has endometriosis (even if they don't know it yet). This isn't a topic that gets much media attention as compared to other illnesses. So I would like to extend my thanks again, to Tracee, for devoting space in her blog to this very important topic that affects many women and girls.

Violet said...

I've known some women with endometriosis, and it's hell.

Not only is it painful and can cause infertility, women have the added burden of feeling like they have to convince doctors and others their disease is real. They are often told that they are exaggerating, crazy or just trying to get attention. Many women go to multiple doctors before being diagnosed.

Like I said on the fibromyalgia post - if this was pain men primarily went through, there would be like 10 cures already.

Alicia said...

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

LisaMM said...

Excellent information for mothers of daughters. thank you.

Jeanne said...

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

Jeanne said...

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

Jeanne said...

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

Friday, April 11, 2008

Empowering Girls: Daughter Have a Uterus?

Perhaps you noticed that your daughter has both a vagina and a uterus when she was born?

Oddly, this causes discomfort in some parents.

I admit to some discomfort in myself when I deal with rashes, itchy or irritation in the general area. As our daughters get older the issues surrounding their feminine organs and parts becomes more complicated. As far as parental discomfort regarding these reproductive issues - it's time to get over it.

Jeanne Connor Dessert has suffered from endometriosis since she was a young teenager. She currently runs a support group for women with endometriosis and she has some fantastic advice to parents of daughters.

I’m 39 years old and my endometriosis symptoms began at age 13. I was not properly diagnosed, however, until the age of 23.

I would like to make all parents of girls out there aware that endometriosis is a serious illness and that symptoms should not be overlooked, marginalized, or viewed as “in a girl’s head”.

Endometriosis is a very real illness that affects an estimated 80 million patients worldwide. Society has taught women and girls that menstrual pain is “normal”. It is not. Endo has a wide variety of symptoms. Cramps are just one of a great many. click on Endometriosis Association “what is it?” for a complete list of symptoms.

The important point I’d like to make is that if you think there’s any chance your daughter is having endo symptoms… I urge you to take it seriously, have her seen by a highly skilled gynecologist highly trained in recognizing and surgically removing endometriosis, and advocate for your daughter. This illness can cause pain (sometimes debilitatating and disabling), infertility, less commonly it can cause bowel obstruction. The list goes on. Endo patients are also at an increased risk for ovarian cancer, melanoma, and breast cancer.

If you have endo in your family (which some people do have family history without even knowing it due to societal “taboos” regarding talking about reproductive organs and menstruation), then your daughter has a higher risk of developing endo. I urge parents to learn the basics about endo. If your daughter has it, you want to be proactive, have her see a properly qualified gynecologist, and not ignore her symptoms. Empower your girls to obtain appropriate health care and not be cast aside by a health care system that isn’t doing all it should for endo patients.

Also, the research dollars for endo have historically been far too limited and I do not think this is an accident. Since this illness affects women and girls, the research dollars are just not as available for it as they would be for an illness affecting both genders.

7 comments:

Jeanne said...

I'm thrilled that Tracee has posted this information about endometriosis. As an endometriosis support group co-leader, I hear stories from new members all the time about not getting diagnosed early. The average diagnosis of endo is 9.9 years AFTER the onset of symptoms. Part of this is definitely linked to society's "taboo" syndrome regarding discussing body parts and their functions, especially those related to the reproductive system. Part of the delay in diagnosis is that there is not enough training, in general, of gynecologists regarding endometriosis (which obviously puts women and girls with endo in a very tricky position). Part of the delay is that endo can't be diagnosed by something as straightforward as a blood test. It's diagnosed by surgery (laparoscopy). The danger of delaying diagnosis is that endo growing rampant inside the girl/woman can later lead to infertility and may also cause pain (debilitating pain in some cases). Endo is also correlated in studies to numerous other illnesses (i.e. interstitial cystitis, fibromyalgia, and irritable bowel syndrome are just a few). Endo can also increase the risk for certain cancers. So if you have ANY suspicion that you or your daughter (or anyone you love) may have endometriosis, please seek the best medical attention you can find. Endometriosis symptoms vary from person to person and some patients have relatively mild symptoms BUT other patients have severe and/or frequent symptoms. In some cases, endo can be disabling. I urge parents to take any symptoms that might be caused by endo seriously. This illness is often misdiagnosed or diagnosed many years after it starts. This can affect endo patients' careers, relationships, education, self-esteem, and predisposition for other potentially disabling conditions. In North America alone, at least 5.5 million women and girls have endo. As Tracee said, the number is 80 million worldwide. The chances are good that you know someone who has endometriosis (even if they don't know it yet). This isn't a topic that gets much media attention as compared to other illnesses. So I would like to extend my thanks again, to Tracee, for devoting space in her blog to this very important topic that affects many women and girls.

Violet said...

I've known some women with endometriosis, and it's hell.

Not only is it painful and can cause infertility, women have the added burden of feeling like they have to convince doctors and others their disease is real. They are often told that they are exaggerating, crazy or just trying to get attention. Many women go to multiple doctors before being diagnosed.

Like I said on the fibromyalgia post - if this was pain men primarily went through, there would be like 10 cures already.

Alicia said...

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

LisaMM said...

Excellent information for mothers of daughters. thank you.

Jeanne said...

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

Jeanne said...

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

Jeanne said...

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