March will mark the beginning of yet another Endometriosis Awareness month. Is the public, referring to those without the disease, any more aware of this condition than they have been in the past? The past year has marked a few celebrities who have come out with being diagnosed with the disease, Dancing with Stars Julianne Hough, and Lacey Schwimmer come to mind, as well as Stephanie St. James, Broadway Star of the "The Color Purple". In the case of the ladies from Dancing with the Stars, the media, at least in my opinion, did a poor job at explaining the realities of this disease. EndoChick blogged extensively on the inaccuracies portrayed during their health disclosure to the media. For more information, please see her blog.
Stephanie St. James has done a fantastic interview with iVillage posted on YouTube in regards to the disease. Another video of her speaking on endometriosis is also available on YouTube.
While it is nice to see more individuals ith celebrity status sharing their personal battles with this disease, it would be even nicer to see a national-wide magazine or newspaper carry a story that accurately reflects what this disease is all about and just how much it interferes in a person's quality of life.
To that end, my good friend Jeanne Endo has created an on-going petition that she would like anyone who desires having more awareness about this disease created, to sign. This will help show in numbers to the various editors and publishers just how many of us out there would really want to see this information in print. Please help Jeanne collect as many signatures as possible through visiting her blog and signing the petition. You may also wish to direct others to her site to sign as well. The more individuals who sign, the more likely the media will be willing to hear our case out.
Jeanne's petition is located at: GoPetitions
Saturday, February 21, 2009
Friday, February 20, 2009
The Fertility Journey: Me Vs. The Vampire
As everyone knows, when you're pregnant they send you for bloodwork. Not just a single vile, that would be too easy, but they have to drain every ounce out of you and then some. Since I've been "sick" forever, there really is no fear any longer with getting it done, it's just that it's still not the most pleasant thing in the world. I pass out at the sight of blood, always have and likely always will.
So I caved today and went for my bloodwork, since I had to take my son to get the blood levels of his anti-seizure medication (Depakene) anyway. I decided I was going to show my son what a brave person looked like when they were having their blood drawn, in hopes to avoid the screaming mess that might go along with taking blood from a 5 year old. I volunteered to go first. But first, I had to fill out a pre-natal screening form. The equivalent of being put on examination for all the world to see. They ask how many pregnanices you have had (I put down all the I know of which now equals 11) and how many live births you have had (1). Seeing the stats on paper was just enough to throw me for a major loop. But then the tech looked at me kinda odd when I handed it back to her and I simply said "I've had 9 miscarriages" (1 live birth + this pregnancy makes the grand total of 11). The room turned silent and I got looks of pity from everyone, great just what I needed to feel better (said with only a hint of sarcasm!).
We got called back and the 1st vampire tried three times to get blood from me. She pushed down on the veins hoping to draw blood out. No such luck. I almost passed out. While she called for vampire #2 to come take the blood from me, she moved on to Jacob. Well, crisis averted, he only said a loud "ouch" and then a "Thank you but I really didn't like that!". At least he can use his manners.
Vampire #2 came back and took my blood on the first try, thankfully or else my arm would look like swiss cheese. It's now hurting to the point of not being able to extend it, I'm guessing Vampire #1 might have gotten a bit lost in digging for veins which is why it's a lovely shade of purple and black. At least it matches how the rest of my body feels!
At least this round is done and out of the way. I lived to tell the tale of another trip to the vampire lab, at least for this round!
So I caved today and went for my bloodwork, since I had to take my son to get the blood levels of his anti-seizure medication (Depakene) anyway. I decided I was going to show my son what a brave person looked like when they were having their blood drawn, in hopes to avoid the screaming mess that might go along with taking blood from a 5 year old. I volunteered to go first. But first, I had to fill out a pre-natal screening form. The equivalent of being put on examination for all the world to see. They ask how many pregnanices you have had (I put down all the I know of which now equals 11) and how many live births you have had (1). Seeing the stats on paper was just enough to throw me for a major loop. But then the tech looked at me kinda odd when I handed it back to her and I simply said "I've had 9 miscarriages" (1 live birth + this pregnancy makes the grand total of 11). The room turned silent and I got looks of pity from everyone, great just what I needed to feel better (said with only a hint of sarcasm!).
We got called back and the 1st vampire tried three times to get blood from me. She pushed down on the veins hoping to draw blood out. No such luck. I almost passed out. While she called for vampire #2 to come take the blood from me, she moved on to Jacob. Well, crisis averted, he only said a loud "ouch" and then a "Thank you but I really didn't like that!". At least he can use his manners.
Vampire #2 came back and took my blood on the first try, thankfully or else my arm would look like swiss cheese. It's now hurting to the point of not being able to extend it, I'm guessing Vampire #1 might have gotten a bit lost in digging for veins which is why it's a lovely shade of purple and black. At least it matches how the rest of my body feels!
At least this round is done and out of the way. I lived to tell the tale of another trip to the vampire lab, at least for this round!
Wednesday, February 18, 2009
The Fertility Journey: The testing verdict
Whoever said the word "impossible" has not met me. Despite being given very low odds at achieving a pregnancy, and despite the intense stress that I have been under for the past few months, I am now 6 weeks pregnant. But it appears that this pregnancy too is going to be eventful :(
I've been having a lot of intestinal bleeding, with sharp shredding type pains throughout my abdomen, with sharper pains on my right pelvic area. After I passed out Monday morning, Brian took me to the ER, which is a story in itself, where I didn't get seen by a doctor. Apparently, people who have sprained ankles and the common cold are more vital to be seen than people who have a high-risk pregnancy. We spent from 3pm until we left at 8:30 waiting to be seen by a doctor. I finally had enough and went to the nursing station, only to be told that it would likely be at least another 8 hours before I would even be seen. You can't expect a pregnant person to not eat, it just doesn't work out well, so we left.
I managed to get an emergency appointment with the fertility specialist yesterday who was quite worried that it might be an ectopic pregnancy. He managed to get me an emergency ultrasound done right away to rule this out. Just as a sidenote, it's cruel and unusual punishment to expect someone to provide a urine sample and then expect them to get a full bladder right away so that they can have the ultrasound.
In any case, it's not an ectopic pregnancy. Everything is right where it should be and I am 6 weeks along. However, it's not without a minor complication. It wouldn't be me unless I had something odd going on! It turns out that the pain is being caused by a 4cm x 5cm hemorrhagic cyst on the right ovary. For those that don't know, this is a blood filled cyst, quite a large one at that. To me, it almost sounds like an endometrioma. It's leaking somewhat, so it might burst anytime, but from the sounds of it, it won't threaten the pregnancy, only my pain levels.
For now, I'm on the frequent flier plan at the doc's office, I go back in two weeks. It looks like it's going to be a long 34 weeks!
I've been having a lot of intestinal bleeding, with sharp shredding type pains throughout my abdomen, with sharper pains on my right pelvic area. After I passed out Monday morning, Brian took me to the ER, which is a story in itself, where I didn't get seen by a doctor. Apparently, people who have sprained ankles and the common cold are more vital to be seen than people who have a high-risk pregnancy. We spent from 3pm until we left at 8:30 waiting to be seen by a doctor. I finally had enough and went to the nursing station, only to be told that it would likely be at least another 8 hours before I would even be seen. You can't expect a pregnant person to not eat, it just doesn't work out well, so we left.
I managed to get an emergency appointment with the fertility specialist yesterday who was quite worried that it might be an ectopic pregnancy. He managed to get me an emergency ultrasound done right away to rule this out. Just as a sidenote, it's cruel and unusual punishment to expect someone to provide a urine sample and then expect them to get a full bladder right away so that they can have the ultrasound.
In any case, it's not an ectopic pregnancy. Everything is right where it should be and I am 6 weeks along. However, it's not without a minor complication. It wouldn't be me unless I had something odd going on! It turns out that the pain is being caused by a 4cm x 5cm hemorrhagic cyst on the right ovary. For those that don't know, this is a blood filled cyst, quite a large one at that. To me, it almost sounds like an endometrioma. It's leaking somewhat, so it might burst anytime, but from the sounds of it, it won't threaten the pregnancy, only my pain levels.
For now, I'm on the frequent flier plan at the doc's office, I go back in two weeks. It looks like it's going to be a long 34 weeks!
Wednesday, February 11, 2009
The Fertility Journey: Thoughts and Feelings on the Octuplets
I respect that not everyone is going to agree with me on this one, but I wanted to write on my feelings in regards to the recent birth of the Octuplets in the US.
As someone who has struggled with fertility issues and multiple miscarriages, I know that my feelings are in part related to the jealousy I feel about not likely having the large family that I dreamed of, but I do believe that some of my feelings are at least warranted in this case.
As many of you know, the set of octuplets were born through IVF to a single mom who was already raising 6 children, 3 of whom according to the press have disabilities. I understand that the purpose behind having multiple embryos implanted is so to give the carrier the best odds at conceiving even a single pregnancy. Even with IVF treatments, there is still great odds at not having any of the pregnancies take. IVF is also to be known to be responsible in a lot of cases for the birth of multiples. Any birth of multiples places the mom at greater risks of pregnancy complications and the children at a greater risk of being born with disabilities. This was clearly explained to me by my RE at my last visit.
IVF is a huge moneymaker for doctors, especially those practising in the US. On average, the doctor will implant 3-4 embryos in hopes that one will take. In this case, the doctor implanted 8. At least. If we consider that the chances of all 4 implanted embryos actually taking are very very low, then the chances of all 8 taking hold are even slimmer. Why would a doctor implant 8, knowing that the risk of having at least 2 would likely be higher? Especially in the face of the potential risks involved?
I just get this feeling in the pit of my stomach that this was a publicity stunt. If the outcome of the implantation was successful, it would highlight the "success" of the fertility doctor involved, likely increasing his caseload (and thus his revenue). If the outcome was successful for the mother, then it would increase her to celebrity status and likely lead to book deals, reality show offers, and a whole heck of a lot of publicity in general. This family has already created a website to gather monetary and gift donations from others who would like to send them in. This is a free world and you can ask for whatever you want, but it all just seems a little unethical to me. Nevermind the fact that this family lives in a state of poverty. How is it financially ethical to have this number of children when you have difficulty feeding the family members you already have? How is this acting responsibly when you already have 6 children and likely not a large support system in place (her mother has stated to media sources that she objected to the whole implantation in the first place)?
Again, these are just my thoughts on the subject and I know that a lot will disagree with what I have had to say.
As someone who has struggled with fertility issues and multiple miscarriages, I know that my feelings are in part related to the jealousy I feel about not likely having the large family that I dreamed of, but I do believe that some of my feelings are at least warranted in this case.
As many of you know, the set of octuplets were born through IVF to a single mom who was already raising 6 children, 3 of whom according to the press have disabilities. I understand that the purpose behind having multiple embryos implanted is so to give the carrier the best odds at conceiving even a single pregnancy. Even with IVF treatments, there is still great odds at not having any of the pregnancies take. IVF is also to be known to be responsible in a lot of cases for the birth of multiples. Any birth of multiples places the mom at greater risks of pregnancy complications and the children at a greater risk of being born with disabilities. This was clearly explained to me by my RE at my last visit.
IVF is a huge moneymaker for doctors, especially those practising in the US. On average, the doctor will implant 3-4 embryos in hopes that one will take. In this case, the doctor implanted 8. At least. If we consider that the chances of all 4 implanted embryos actually taking are very very low, then the chances of all 8 taking hold are even slimmer. Why would a doctor implant 8, knowing that the risk of having at least 2 would likely be higher? Especially in the face of the potential risks involved?
I just get this feeling in the pit of my stomach that this was a publicity stunt. If the outcome of the implantation was successful, it would highlight the "success" of the fertility doctor involved, likely increasing his caseload (and thus his revenue). If the outcome was successful for the mother, then it would increase her to celebrity status and likely lead to book deals, reality show offers, and a whole heck of a lot of publicity in general. This family has already created a website to gather monetary and gift donations from others who would like to send them in. This is a free world and you can ask for whatever you want, but it all just seems a little unethical to me. Nevermind the fact that this family lives in a state of poverty. How is it financially ethical to have this number of children when you have difficulty feeding the family members you already have? How is this acting responsibly when you already have 6 children and likely not a large support system in place (her mother has stated to media sources that she objected to the whole implantation in the first place)?
Again, these are just my thoughts on the subject and I know that a lot will disagree with what I have had to say.
Friday, February 6, 2009
The Fertility Journey: To Test or Not to Test
As I sit down to write this, I am on day 32 of my cycle. Yes, day 32 and I am late by all means. I know that I have been under considerable stress as of the past few months, and that stress can delay periods. However, stress has ALWAYS been a trigger for me to have a period, even if it's within days of just ending the last one.
I had spent ovulation week at the hospital with my son having his Video-EEG done, which meant no sex during ovulation week for me. Hmmm, maybe my partner does have the super-sperm that he's been declaring all along. From what I've read sperm can last in fertile fluids for up to 5 days. But given my odds, let's be realistic about how likely this is!
I have no real pregnancy type symptoms to declare at this point, although I have been drinking gallon upon gallon of water lately and can't seem to get enough food. No vomiting, no sore boobs, nada. However, the endo that is within my torso muscles has not begun to change color as yet as it does just before the onset of my period monthly. This morning I had thought my period was going to show up, but it was just rectal bleeding. Maybe my period has decided to come out the wrong hole instead.
So I sit here playing a game much like "Does he love me or not" that we play with the daisies but have substituted "To test or not". At this point in time, I'm pretty fragile emotionally, and just don't want to go through the disappointment of not having the results I hope for. If no period shows up this weekend, then I might break down and buy the EPT.
Time will reveal all...
I had spent ovulation week at the hospital with my son having his Video-EEG done, which meant no sex during ovulation week for me. Hmmm, maybe my partner does have the super-sperm that he's been declaring all along. From what I've read sperm can last in fertile fluids for up to 5 days. But given my odds, let's be realistic about how likely this is!
I have no real pregnancy type symptoms to declare at this point, although I have been drinking gallon upon gallon of water lately and can't seem to get enough food. No vomiting, no sore boobs, nada. However, the endo that is within my torso muscles has not begun to change color as yet as it does just before the onset of my period monthly. This morning I had thought my period was going to show up, but it was just rectal bleeding. Maybe my period has decided to come out the wrong hole instead.
So I sit here playing a game much like "Does he love me or not" that we play with the daisies but have substituted "To test or not". At this point in time, I'm pretty fragile emotionally, and just don't want to go through the disappointment of not having the results I hope for. If no period shows up this weekend, then I might break down and buy the EPT.
Time will reveal all...
Wednesday, February 4, 2009
Finding an "Endometriosis Specialist"
Ever since I took over the running of the Yahoo Support Group "Goddesses of Endometriosis", I have been bombarded with the constant question of how does someone find a specialist who knows something about this disease. For those who have read my first online posting detailing my journey to date with endo, you may recall that I went through doctor after doctor in my search for someone who understood and was able to treat me. It is a frustrating and exhausting part of many of our experiences, and it shouldn't be a reality in this day and age. And yet it is. Doctors out there still hold tightly onto such myths as "this treatment will cure you" (there is no cure), "you're sick because you delayed having children" (it used to be thought that only women in their 30's and upwards had this disease), "it's not that painful" (umm, hello? internal bleeding?)... and many more. So what is a woman who is either diagnosed with endo or fears that she may have this disease supposed to do?
The answer (or at least one of the better options): Find an endo specialist. Easier said than done for a lot of people, especially those who are knew to this journey and are unsure of what to look for, what to ask, and where to even begin. After all, should a regular gynaecologist, someone who specializes in treating women's basic reproductive health matters, be knowledgeable on a disease that effects 1 in 5 or 20% of all women? If only it were this simple.
For whatever reason, it seems that quite a few ob/gyns out there are completely aware of the complex aspects of this disease. Many of us often get the "vibe" that our ob/gyn is throwing up their hands in a display of defeat when the treatments that they are aware of fail to resolve our symptoms. For a woman who is already deep in the throes of despair, this can drive them even further into feeling like they should just give up.
An endo specialist is typically a reproductive endocrinologist, a doctor who has gone beyond the ob/gyn designation to study hormonal diseases of the reproductive system. Word to the wise: not all reproductive endocrinologists are endo specialists, many of them only concentrate on the disease from a fertility aspect rather than a management perspective. We know from research that in many cases, women with endo have "out of whack" hormonal systems, which makes seeking someone who explores hormonally related illnesses a better option right off the bat. If endo feeds off hormones, then it is in part a "hormonal disease of the reproductive system". So what else makes these doctors a better choice?
1) They tend to see more patients with the disease. If a regular doctor is only seeing a handful of patients who have the disease, and their condition is being "well-managed", perhaps they don't have the full picture to deal with more complex cases where the patient doesn't respond so easily. In seeing more patients, we can also assume that they are going to have a wider perspective based upon the collective experience of the women that they treat. If they see more patients, they also likely have better surgical skills. After all, doctors can only improve their skills with experience. Improved surgical skills also means that they may feel more competent at removing endo from places that some other doctors won't touch, such as the bladder and bowel.
2) They tend to keep informed on the latest research. Who wants to know only about the developments that occurred 20-30 years ago with this disease? And yet, if a doctor doesn't bother to read anything on the illness post-graduation, how are they going to know all of the advances that have been made?
So, how does someone go about finding one of these more knowledgeable doctors? Here's how I help others locate specialists in their area:
1. The Endometriosis Research Centre facilitates a Yahoo support group called EndoDocs. This is a list of doctors that other women with the disease have recommended throughout their experiences.
2. Women's Surgery Group has a smaller list of specialists.
3. Victoria's website keeps a list of specialists as well.
4. Next up, I will look at the following medical associations which provide doctor finding services:
The Society for Reproductive Endocrinology and Infertility
American Association of Gynaecological Laparoscopists (AAGL)
American Society for Reproductive Medicine
Society of Reproductive Surgeons
5. You might look at sites such as locateadoc.com (and click on infertility under the area of specialty), ratemds.com, suggestadoctor.com
6. You might also look at your local hospital's webpage and search out the doctors that work at that particular hospital, most of the time they will have some type of bio available online.
With the names of the doctors that I find, I will then put them into google so that the search bar reads "Dr. Name" endometriosis. Of course you will put the doctor's name in question into the quote marks. So for Dr. Redwine for example, the google search bar will read "Dr. Redwine" endometriosis This should pull up any association the doctor has with the illness. If they do specialize in the disease, you'll likely gets hits for research that they have done, you might come across other women who have mentioned him/her, etc... The more hits, the better. Of course, if you don't find any hits at all with the connection between the name and endometriosis, they are less likely to truly specialize in the disease.
I hope that this helps to lessen people's search for medical attention and relieve a bit of the frustration that this disease carries with it.
The answer (or at least one of the better options): Find an endo specialist. Easier said than done for a lot of people, especially those who are knew to this journey and are unsure of what to look for, what to ask, and where to even begin. After all, should a regular gynaecologist, someone who specializes in treating women's basic reproductive health matters, be knowledgeable on a disease that effects 1 in 5 or 20% of all women? If only it were this simple.
For whatever reason, it seems that quite a few ob/gyns out there are completely aware of the complex aspects of this disease. Many of us often get the "vibe" that our ob/gyn is throwing up their hands in a display of defeat when the treatments that they are aware of fail to resolve our symptoms. For a woman who is already deep in the throes of despair, this can drive them even further into feeling like they should just give up.
An endo specialist is typically a reproductive endocrinologist, a doctor who has gone beyond the ob/gyn designation to study hormonal diseases of the reproductive system. Word to the wise: not all reproductive endocrinologists are endo specialists, many of them only concentrate on the disease from a fertility aspect rather than a management perspective. We know from research that in many cases, women with endo have "out of whack" hormonal systems, which makes seeking someone who explores hormonally related illnesses a better option right off the bat. If endo feeds off hormones, then it is in part a "hormonal disease of the reproductive system". So what else makes these doctors a better choice?
1) They tend to see more patients with the disease. If a regular doctor is only seeing a handful of patients who have the disease, and their condition is being "well-managed", perhaps they don't have the full picture to deal with more complex cases where the patient doesn't respond so easily. In seeing more patients, we can also assume that they are going to have a wider perspective based upon the collective experience of the women that they treat. If they see more patients, they also likely have better surgical skills. After all, doctors can only improve their skills with experience. Improved surgical skills also means that they may feel more competent at removing endo from places that some other doctors won't touch, such as the bladder and bowel.
2) They tend to keep informed on the latest research. Who wants to know only about the developments that occurred 20-30 years ago with this disease? And yet, if a doctor doesn't bother to read anything on the illness post-graduation, how are they going to know all of the advances that have been made?
So, how does someone go about finding one of these more knowledgeable doctors? Here's how I help others locate specialists in their area:
1. The Endometriosis Research Centre facilitates a Yahoo support group called EndoDocs. This is a list of doctors that other women with the disease have recommended throughout their experiences.
2. Women's Surgery Group has a smaller list of specialists.
3. Victoria's website keeps a list of specialists as well.
4. Next up, I will look at the following medical associations which provide doctor finding services:
The Society for Reproductive Endocrinology and Infertility
American Association of Gynaecological Laparoscopists (AAGL)
American Society for Reproductive Medicine
Society of Reproductive Surgeons
5. You might look at sites such as locateadoc.com (and click on infertility under the area of specialty), ratemds.com, suggestadoctor.com
6. You might also look at your local hospital's webpage and search out the doctors that work at that particular hospital, most of the time they will have some type of bio available online.
With the names of the doctors that I find, I will then put them into google so that the search bar reads "Dr. Name" endometriosis. Of course you will put the doctor's name in question into the quote marks. So for Dr. Redwine for example, the google search bar will read "Dr. Redwine" endometriosis This should pull up any association the doctor has with the illness. If they do specialize in the disease, you'll likely gets hits for research that they have done, you might come across other women who have mentioned him/her, etc... The more hits, the better. Of course, if you don't find any hits at all with the connection between the name and endometriosis, they are less likely to truly specialize in the disease.
I hope that this helps to lessen people's search for medical attention and relieve a bit of the frustration that this disease carries with it.
Monday, February 2, 2009
The Exploitation of Illness
This post has been a long-time in the works. With all that I have learned about this disease through experience, reading medical journals and textbooks, I've been growing more and more disturbed (or is it irritated?) by the increase in those that promote a "cure" for this disease.
If I flash-back to when at 23 years of age I finally had a name to call my experience, I had just dove into finding everything I could out about the disease. Along my journey from doctor after doctor, I became even more desperate, and would have likely grabbed out for anything that offered an ounce of relief from the constant pain. I don't think that my feelings of desperation back then vary all that much from the majority of those who also live with this disease. I also don't believe that these feelings are at all irrational. Who wants to live with a disease that causes pain, financial distress, social isolation, and often effects our dreams for our own future? Who when at their absolutely wit's end with the treatments that their doctors are or in some cases, are not, offering wouldn't reach out to any hand that is offering to help?
Now that I've learned so much about endo from a variety of different sources, I'm more aware that often these hands that are reaching out to others may not be reaching out with the best of intentions. There are "agencies" or certain people out there who do in fact exploit the suffering that we go through, most often for their monetary gain.
The World Endometriosis Society's October Issue of their E-Journal featured a letter from the President of the Society on the topic of this form of exploitation. Professor Hans Evers, the President of the WES had come across a website that was blatantly promoting a cure for this disease, in this case through curing the candida albicans within the system. This approach, immunotherapy, has been reviewed within The Endometriosis's Association newer book on the disease; Endometriosis: The Complete Reference for Taking Charge of Your Health. The doctor on the website in question is not an endo specialist, not even an Ob/gyn, however claims that they can successfully treat this disease through the immune system approach.
Ok... Well yes, I do experience the lovely intestinal candida problems, there is no question. And when I avoid yeast and unnatural sugars while taking probiotics, it does not seem to affect me as badly. However, how can this person claim that the candida causes the endo in the first place? As Professor Hans also points out, there are only a handful of articles on the topic of endometriosis and candida, with no clear causal relationship being spoken of within the research. While there have been advances in identifying different genes and enzymes which might contribute to the disease formation, there still has been no cause found to date.
Without a cause for the disease, how can there be a cure? At the moment, the best "cure" appears to be excision surgery as it typically means a longer length of time between repeat surgeries. But even this is not a cure, as many of the women in my support group who have had endo excision surgery, have still gone on to have endo afterwards. The point is, if the process that creates the disease in the first place is still present after the surgeries and other therapies, than it would only make sense that there is a chance for it to return afterwards. Even if you remove the cells, the process that caused it to go haywire in the first place, may still lead towards it going haywire at a later time.
Many herbal companies who so freely advertise with their headlines of "Beat Endometriosis Naturally" or something along those lines, also prey on our desperation for their own profits. I have come across one such website which claims to have the cure in a magic herbal pill form, and suggests several times over again that research has revealed it's effectiveness. However, there were no direct hits on the various medical websites when looking for the name of the herbal concoction and the word 'endometriosis'. I myself had wrote to this manufacturer several times to request further information and did not receive any replies. My telephone calls also went unheard.
The third source of exploitation that has been nagging at me has been an individual who represents themselves as being part of a non-profit foundation which does not exist. This person has claimed to have found a pharmaceutical product that has cured them of the disease. However, in earlier e-mails, prior to this person somehow "forgetting" the facts, they had mentioned that after the "miracle treatment" within the repeated surgeries for supposedly only adhesions that there had in deed been "minor" endo cells found. Given my research into endo, I know that oftentimes even when there is only a handful of visible cells that there are typically more that are microscopic, invisible to the naked eye. There is a complete difference between being "cured" of the disease and still having minimal endo cells present. Endo cells are endo cells no matter how many or what size they might be.
All of these forms of exploitation are disgusting. We truly are a vulnerable population due to our illness(es) as Dr. Hans points out. I give major kudos to the World Endometriosis Society for highlighting this subject and doing their part to raise awareness. There will always be others that will try to take advantage of our situation, however with more awareness highlighting this area, hopefully not many more of us will have to be "victimized".
If I flash-back to when at 23 years of age I finally had a name to call my experience, I had just dove into finding everything I could out about the disease. Along my journey from doctor after doctor, I became even more desperate, and would have likely grabbed out for anything that offered an ounce of relief from the constant pain. I don't think that my feelings of desperation back then vary all that much from the majority of those who also live with this disease. I also don't believe that these feelings are at all irrational. Who wants to live with a disease that causes pain, financial distress, social isolation, and often effects our dreams for our own future? Who when at their absolutely wit's end with the treatments that their doctors are or in some cases, are not, offering wouldn't reach out to any hand that is offering to help?
Now that I've learned so much about endo from a variety of different sources, I'm more aware that often these hands that are reaching out to others may not be reaching out with the best of intentions. There are "agencies" or certain people out there who do in fact exploit the suffering that we go through, most often for their monetary gain.
The World Endometriosis Society's October Issue of their E-Journal featured a letter from the President of the Society on the topic of this form of exploitation. Professor Hans Evers, the President of the WES had come across a website that was blatantly promoting a cure for this disease, in this case through curing the candida albicans within the system. This approach, immunotherapy, has been reviewed within The Endometriosis's Association newer book on the disease; Endometriosis: The Complete Reference for Taking Charge of Your Health. The doctor on the website in question is not an endo specialist, not even an Ob/gyn, however claims that they can successfully treat this disease through the immune system approach.
Ok... Well yes, I do experience the lovely intestinal candida problems, there is no question. And when I avoid yeast and unnatural sugars while taking probiotics, it does not seem to affect me as badly. However, how can this person claim that the candida causes the endo in the first place? As Professor Hans also points out, there are only a handful of articles on the topic of endometriosis and candida, with no clear causal relationship being spoken of within the research. While there have been advances in identifying different genes and enzymes which might contribute to the disease formation, there still has been no cause found to date.
Without a cause for the disease, how can there be a cure? At the moment, the best "cure" appears to be excision surgery as it typically means a longer length of time between repeat surgeries. But even this is not a cure, as many of the women in my support group who have had endo excision surgery, have still gone on to have endo afterwards. The point is, if the process that creates the disease in the first place is still present after the surgeries and other therapies, than it would only make sense that there is a chance for it to return afterwards. Even if you remove the cells, the process that caused it to go haywire in the first place, may still lead towards it going haywire at a later time.
Many herbal companies who so freely advertise with their headlines of "Beat Endometriosis Naturally" or something along those lines, also prey on our desperation for their own profits. I have come across one such website which claims to have the cure in a magic herbal pill form, and suggests several times over again that research has revealed it's effectiveness. However, there were no direct hits on the various medical websites when looking for the name of the herbal concoction and the word 'endometriosis'. I myself had wrote to this manufacturer several times to request further information and did not receive any replies. My telephone calls also went unheard.
The third source of exploitation that has been nagging at me has been an individual who represents themselves as being part of a non-profit foundation which does not exist. This person has claimed to have found a pharmaceutical product that has cured them of the disease. However, in earlier e-mails, prior to this person somehow "forgetting" the facts, they had mentioned that after the "miracle treatment" within the repeated surgeries for supposedly only adhesions that there had in deed been "minor" endo cells found. Given my research into endo, I know that oftentimes even when there is only a handful of visible cells that there are typically more that are microscopic, invisible to the naked eye. There is a complete difference between being "cured" of the disease and still having minimal endo cells present. Endo cells are endo cells no matter how many or what size they might be.
All of these forms of exploitation are disgusting. We truly are a vulnerable population due to our illness(es) as Dr. Hans points out. I give major kudos to the World Endometriosis Society for highlighting this subject and doing their part to raise awareness. There will always be others that will try to take advantage of our situation, however with more awareness highlighting this area, hopefully not many more of us will have to be "victimized".
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