As I've mentioned before, in some countries there are not many ObGyns who offer misoprostol (Cytotec) for treating missed or incomplete miscarriages. This is unfortunate because it is known to be effective and does not carry the risks and potential complications such as infertility that standard care D&C does.
All women should be given a choice in the treatment of their own bodies, provided that their decision does not put their own life at risk.
Therefore I'm putting together a database of Obgyns from all over the world who do offer women the choice of medical management (eg. misoprostol/cytotec, mifepristone) so that women will have a resource if they find themselves in need.
If you are either a patient who has been treated with drugs for managing miscarriage, or a doctor who believes in a patient's right to choose and are experienced in the use of medical management of miscarriage, please contact me on:
ashermansprevention@gmail.com
Thank you.
Note to Doctors: Let me know if you have any concerns about having your names made public. I can always keep the database private and offer the names of doctors in specific areas confidentially to those who request it.
Showing posts with label medical activism. Show all posts
Showing posts with label medical activism. Show all posts
Tuesday, February 2, 2010
Thursday, November 26, 2009
Misprostol for miscarriage management to prevent Asherman's syndrome
Misoprostol (also known as Cytotec produced by Pfizer) is a synthetic prostaglandin E1 analogue which causes uterine contractions that empty the uterus. Initially developed for the treatment of gastric ulcers, misoprostol was found to have numerous gynecological indications including treatment of missed or incomplete miscarriage (or termination), or retained placenta following full term delivery, postpartum hemorrhaging (PPH) and labour induction. The advantage of using misoprostol for miscarriage/retained placenta management is the avoidance of the invasive, costly and potentially damaging D&C procedure (eg. Asherman's syndrome).
Misoprostol is on the WHO essential medicine list for abortion induction (in combination with mifepristone) and labour induction. Earlier this year the ACOG published a committee opinion supporting the worldwide availability of misoprostol for postabortion care (both spontaneous and induced), acknowledging its ability to prevent needless deaths in developing nations (1). It has been approved in more than 85 countries since 1985. Yet in all but 4 countries (France, Brazil, Taiwan and Egypt) it has only been approved for use in gastric ulcers. It seems that the major obstacle to the US’s FDA approval of misoprostol for gynecological indications is the original manufacturer's refusal to permit the drug to be used for pregnancy-related applications for moral rather than medical reasons: misoprostol can also be used for terminations (2). As long as those with other agendas can proclaim that misoprostol is 'not FDA (or TGA in Australia) approved' and is being used ‘off-label’, they can continue to at least imply that the reasons for this are safety-related, creating fear or uncertainty in patients and doctors alike. In fact, misoprostol is one of the most widely studied prostaglandins and has undergone hundreds of clinical trials for over 20 years. In comparison, by today's high safety and medical ethics standards, there is little doubt that the century-old blind, invasive D&C would fail to gain approval for routine use. Off label use of medication is not only legal, it is also safe when backed by years of clinical trials assessing safety. Unbeknownst to many, off label use of other Obstetric drugs is commonplace.
Could there be another underlying conflict in the D&C versus misoprostol/medical management- a hidden competition between doctors who perfom surgery and the pharmaceutical industry which produces the drug over financial gain from miscarriages/terminations? From the publications of some doctors at least it would appear that the pharmaceutical industry bowing to anti-abortion lobbyists (2) is the main obstacle rather than the collective rejection of doctors to use misoprostol. Having said this, some doctors remain ignorant about its use and hesitant to learn more. More needs to be done to educate doctors on the use of misoprostol for medical management of miscarriage, beginning in medical school where they are instead trained to peform D&Cs for just about every gynecological condition encountered.
To date there is one randomized control trial comparing the use of misoprostol to D&C for treatment of miscarriage with regards to intrauterine adhesion outcomes. Not surprisingly, this study suggests misoprostol would reduce the incidence of intrauterine adhesions (3). Although these results seem intuitive, in medicine (and science) studies are always needed as evidence, especially when a ‘standard’ treatment is to be usurped by a newer method which some doctors seem inexplicably reluctant to embrace. More such studies would also be helpful in putting to rest the ‘subclinical’ infection myth or other unsubstantiated hypotheses on the etiology of Asherman’s syndrome which somehow shift blame away from instrumentation to a yet unproven and uncharacterized patient factor (eg. patient constitution or a ‘naturally’ occurring physiological phenomenon in the absence of surgery).
Unfortunately, for a variety of reasons Gynecological/Obstetric practice has been slow to keep up with research with regards to the use of medical management for miscarriage. Although there are thankfully some doctors who have incorporated misoprostol management of miscarriage into their arsenal of treatments, my experience is that they are far too few and far between at least in some countries. This is inexcusable given the risks of infertility and future obstetric complications in women who have undergone D&C, still regarded as the 'standard care' for treating missed or incomplete miscarriages. Not only is misoprostol effective, it can be used in both first and second trimester pregnancy losses.
The misoprostol.org website provides a useful table summarizing guidelines for using misoprostol for different obstetric indications and at different stages of pregnancy. Like any drug, it must be used according to guidelines and under medical supervision.
I also came across a very helpful website where women shared their experiences with using misoprostol for miscarriage.
I am adding the site to the links to the right of this blog in the hope that it will help enlighten women to the existence of medical management and what to expect. It is a longer process to use misoprostol (and more painful particularly if used for second trimester losses), however these disadvantages pale significantly against the potential complications of D&C. The more women who become aware about Asherman's syndrome and future high risk pregnancies, the more will request misoprostol treatment, hopefully forcing changes in practice and policies of standard treatment for miscarriage.
REFERENCES
1. ACOG. ACOG Committee Opinion No. 427: Misoprostol for postabortion care.
Obstet Gynecol 2009;113(2 Pt 1):465-8.
2. Misoprostol and the debate over off-label drug use (Commentary): BJOG: an International Journal of Obstetrics and Gynaecology
March 2005, Vol. 112, pp. 269–272. Link to full pdf
3. Tam, WH, Lau, WC, Cheung, LP, Yuen, PM, and Chung, TK. Intrauterine
adhesions after conservative and surgical management of spontaneous abortion. J
Am Assoc Gynecol Laparosc 2002;9(2):182-5.
Misoprostol is on the WHO essential medicine list for abortion induction (in combination with mifepristone) and labour induction. Earlier this year the ACOG published a committee opinion supporting the worldwide availability of misoprostol for postabortion care (both spontaneous and induced), acknowledging its ability to prevent needless deaths in developing nations (1). It has been approved in more than 85 countries since 1985. Yet in all but 4 countries (France, Brazil, Taiwan and Egypt) it has only been approved for use in gastric ulcers. It seems that the major obstacle to the US’s FDA approval of misoprostol for gynecological indications is the original manufacturer's refusal to permit the drug to be used for pregnancy-related applications for moral rather than medical reasons: misoprostol can also be used for terminations (2). As long as those with other agendas can proclaim that misoprostol is 'not FDA (or TGA in Australia) approved' and is being used ‘off-label’, they can continue to at least imply that the reasons for this are safety-related, creating fear or uncertainty in patients and doctors alike. In fact, misoprostol is one of the most widely studied prostaglandins and has undergone hundreds of clinical trials for over 20 years. In comparison, by today's high safety and medical ethics standards, there is little doubt that the century-old blind, invasive D&C would fail to gain approval for routine use. Off label use of medication is not only legal, it is also safe when backed by years of clinical trials assessing safety. Unbeknownst to many, off label use of other Obstetric drugs is commonplace.
Could there be another underlying conflict in the D&C versus misoprostol/medical management- a hidden competition between doctors who perfom surgery and the pharmaceutical industry which produces the drug over financial gain from miscarriages/terminations? From the publications of some doctors at least it would appear that the pharmaceutical industry bowing to anti-abortion lobbyists (2) is the main obstacle rather than the collective rejection of doctors to use misoprostol. Having said this, some doctors remain ignorant about its use and hesitant to learn more. More needs to be done to educate doctors on the use of misoprostol for medical management of miscarriage, beginning in medical school where they are instead trained to peform D&Cs for just about every gynecological condition encountered.
To date there is one randomized control trial comparing the use of misoprostol to D&C for treatment of miscarriage with regards to intrauterine adhesion outcomes. Not surprisingly, this study suggests misoprostol would reduce the incidence of intrauterine adhesions (3). Although these results seem intuitive, in medicine (and science) studies are always needed as evidence, especially when a ‘standard’ treatment is to be usurped by a newer method which some doctors seem inexplicably reluctant to embrace. More such studies would also be helpful in putting to rest the ‘subclinical’ infection myth or other unsubstantiated hypotheses on the etiology of Asherman’s syndrome which somehow shift blame away from instrumentation to a yet unproven and uncharacterized patient factor (eg. patient constitution or a ‘naturally’ occurring physiological phenomenon in the absence of surgery).
Unfortunately, for a variety of reasons Gynecological/Obstetric practice has been slow to keep up with research with regards to the use of medical management for miscarriage. Although there are thankfully some doctors who have incorporated misoprostol management of miscarriage into their arsenal of treatments, my experience is that they are far too few and far between at least in some countries. This is inexcusable given the risks of infertility and future obstetric complications in women who have undergone D&C, still regarded as the 'standard care' for treating missed or incomplete miscarriages. Not only is misoprostol effective, it can be used in both first and second trimester pregnancy losses.
The misoprostol.org website provides a useful table summarizing guidelines for using misoprostol for different obstetric indications and at different stages of pregnancy. Like any drug, it must be used according to guidelines and under medical supervision.
I also came across a very helpful website where women shared their experiences with using misoprostol for miscarriage.
I am adding the site to the links to the right of this blog in the hope that it will help enlighten women to the existence of medical management and what to expect. It is a longer process to use misoprostol (and more painful particularly if used for second trimester losses), however these disadvantages pale significantly against the potential complications of D&C. The more women who become aware about Asherman's syndrome and future high risk pregnancies, the more will request misoprostol treatment, hopefully forcing changes in practice and policies of standard treatment for miscarriage.
REFERENCES
1. ACOG. ACOG Committee Opinion No. 427: Misoprostol for postabortion care.
Obstet Gynecol 2009;113(2 Pt 1):465-8.
2. Misoprostol and the debate over off-label drug use (Commentary): BJOG: an International Journal of Obstetrics and Gynaecology
March 2005, Vol. 112, pp. 269–272. Link to full pdf
3. Tam, WH, Lau, WC, Cheung, LP, Yuen, PM, and Chung, TK. Intrauterine
adhesions after conservative and surgical management of spontaneous abortion. J
Am Assoc Gynecol Laparosc 2002;9(2):182-5.
Friday, September 11, 2009
The cycle of Asherman's syndrome needs to be broken with prevention
In my next blog I will explain why it is that current treatment (surgery and hormone therapy) can never be a cure for all women who have been diagnosed with Asherman’s syndrome (AS). However I also want to explain why my position on prevention as the best approach is unwavering. I’ve always maintained that I would continue to spread my word about prevention even if I was lucky enough to have a baby after AS treatment. This is because I realize that I would be one of the lucky minority if I did. Just because I may be fortunate enough to have a child after my diagnosis and treatment doesn’t mean I should forget about all of the others who didn’t. It’s not about how ‘hard’ you try or how ‘deserving’ you are- one has to understand that the body has its limits according to the damage that was incurred and other factors. I would realize that my case may not have necessary been as severe or my situation not as dire as others who were inflicted with this condition. It would be unfair to the women who have done all they possibly could to achieve a live birth but didn’t succeed to not acknowledge that each case is different not only in severity but also the circumstances in which it happens. As a PhD scientist (molecular microbiology) I know there are no hidden Asherman’s experts out there: all of the ones who are truly experts have peer reviewed published papers on outcomes in their patients following treatment. That is the nature of these careers. One is judged and recognized according to their publication record. And I have read those papers and know what the outcomes are. I would feel daft to go around telling other women not to worry about getting Asherman's syndrome because it can be treated when a) according to statistics from the best doctors, the majority of women will not have a live birth after AS, and b) it doesn't have to happen in the first place. I know also that personally, I could never forget what happened to me for no justifiable reason. Imagine if someone almost accidentally killed you through a preventable and routine careless act but you were saved by a treatment which has a 50% failure rate at best- would you think it was better to promote the treatment , or would you want to do something to prevent another person from possibly losing their life? If I will ever be fortunate to have a child after Asherman’ s syndrome it doesn’t mean that it is still acceptable to damage women through the systematic use of D&C when alternatives exist. I cannot forget the years of suffering, of fearing I will never have a child, the sleepless nights, the tears, the time lost waiting for treatment as I now had to race against my biological clock, the negative pregnancy tests month after month, the failed IVF, the worries that even if I were to become pregnant post AS pregnancies are high risk, none of that will ever be ‘worth it’. For me, to say something is ‘worth it’, it has to be something challenging that I chose for myself, not what someone (ie a treating Dr) did to me. For example, my PhD- those were some of the most difficult and challenging years of my life, performing experiments until late at night and on weekends, reading hundreds of papers, spending months writing my thesis. But I wanted to do, and it was worth it! Without all that hard work I wouldn't have achieved it. On the other hand, it should not be a struggle to have a child when nothing is wrong with you in the first place. Isn't there enough infertility and heartache in the world without doctors causing Asherman's syndrome?
As women we are expected to be martyrs and put up with all kinds of assaults on our bodies without complaining. It’s supposed to be the very essence of being a caring, nurturing Madonna, to put ourselves last. I prefer to be proactive and warn women about the dangers of D&C, and let doctors know it is not OK to perform D&Cs at the drop of a hat. It’s not acceptable to pretend there are no alternatives and to keep silent when prolife activists prevent drug companies from seeking FDA approval for drugs which can prevent fertility loss and even mortality because they also happen to be used for abortion.
You see, it’s not just about me. Of course I’m angry that it happened to me, especially given the particular circumstances- I was 39 and it was my first pregnancy that ended in miscarriage. Given my age I was extremely concerned about future fertility. I had asked about the risks of D&C and in particular about AS only to be told it was rare, I had asked for alternatives like misoprostol only to be told it was ineffective and refused. I had put up a brave stand to avoid D&C by waiting to miscarry myself (which I did) and after all of that I was told that I had RPOC and had to have a D&C or risked getting AS from an infection (balogna!). The pathology report showed that I only had a blood clot and some tiny fragments and no infection. But it's not that I am a disgruntled, childless older woman: even if I were to have a child, it’s the principle that I find objectionable- that women are continuing to go through this needless suffering because doctors will not give up an archaic surgery even when other safer and cheaper medical options have been developed.
Once again, to be clear, I encourage all women who have been diagnosed with Asherman’s syndrome: please seek help from an expert for treatment if you want to have a chance of having a child. I won’t ever regret having treatment even if I don’t succeed in having a child because I know without it there would be no possibility of it. I gave myself the best odds that I could in a situation which never should have happened to me in the first place. But just because it happened to me it doesn’t mean it should continue happening to others! There is nothing I gain out of pain and suffering of other women. It makes me somewhat angry that other women who have had it before me have done nothing to prevent it from happening to me and others. It makes me somewhat resentful that the information I was after about D&C risks and alternatives for miscarriage management were not readily available to me at the time that I needed it. And I refuse to continue that cycle which is why I am doing everything possible to warn and educate women about the big coverup about Asherman’s syndrome and D&C risks and the existence of cheaper and safer alternatives. Not to mention the exaggeration of treatment success to patients as an excuse to hinder prevention. Of course, anything that promotes further dependence on doctors is encouraged and supported by the medical community while prevention is ignored. It’s time to break the cycle-now.
Some women speak of the spiritual journey AS has given them in a way where they almost sound thankful that it happened to them! All I can say it that I don' t understand people who are thankful for unnecessary damage to be inflicted upon themselves. Only someone who didn’t feel they were worthy or seriously deluded would think it was a blessing in disguise. Asherman’s syndrome was never ‘meant to be’. It only happens because many doctors are unwilling to offer alternatives to D&Cs and nothing is being done about it.
In my ‘journey’ I have learned a lot from having Asherman’s syndrome. I have learned that there is an urgent need for women to speak out against the routine use of D&C for miscarriage. I have learned that women should at the very least be given the right to choose which treatment option they prefer. I have learned that women must pressure doctors and the government to approve of all drugs which can help to safely evacuate the uterus and that these should be the first line of therapy for miscarriage and other indications instead of D&C. I have learned that not all doctors act in the best interest of their patients so patient activism is required for change.
As women we are expected to be martyrs and put up with all kinds of assaults on our bodies without complaining. It’s supposed to be the very essence of being a caring, nurturing Madonna, to put ourselves last. I prefer to be proactive and warn women about the dangers of D&C, and let doctors know it is not OK to perform D&Cs at the drop of a hat. It’s not acceptable to pretend there are no alternatives and to keep silent when prolife activists prevent drug companies from seeking FDA approval for drugs which can prevent fertility loss and even mortality because they also happen to be used for abortion.
You see, it’s not just about me. Of course I’m angry that it happened to me, especially given the particular circumstances- I was 39 and it was my first pregnancy that ended in miscarriage. Given my age I was extremely concerned about future fertility. I had asked about the risks of D&C and in particular about AS only to be told it was rare, I had asked for alternatives like misoprostol only to be told it was ineffective and refused. I had put up a brave stand to avoid D&C by waiting to miscarry myself (which I did) and after all of that I was told that I had RPOC and had to have a D&C or risked getting AS from an infection (balogna!). The pathology report showed that I only had a blood clot and some tiny fragments and no infection. But it's not that I am a disgruntled, childless older woman: even if I were to have a child, it’s the principle that I find objectionable- that women are continuing to go through this needless suffering because doctors will not give up an archaic surgery even when other safer and cheaper medical options have been developed.
Once again, to be clear, I encourage all women who have been diagnosed with Asherman’s syndrome: please seek help from an expert for treatment if you want to have a chance of having a child. I won’t ever regret having treatment even if I don’t succeed in having a child because I know without it there would be no possibility of it. I gave myself the best odds that I could in a situation which never should have happened to me in the first place. But just because it happened to me it doesn’t mean it should continue happening to others! There is nothing I gain out of pain and suffering of other women. It makes me somewhat angry that other women who have had it before me have done nothing to prevent it from happening to me and others. It makes me somewhat resentful that the information I was after about D&C risks and alternatives for miscarriage management were not readily available to me at the time that I needed it. And I refuse to continue that cycle which is why I am doing everything possible to warn and educate women about the big coverup about Asherman’s syndrome and D&C risks and the existence of cheaper and safer alternatives. Not to mention the exaggeration of treatment success to patients as an excuse to hinder prevention. Of course, anything that promotes further dependence on doctors is encouraged and supported by the medical community while prevention is ignored. It’s time to break the cycle-now.
Some women speak of the spiritual journey AS has given them in a way where they almost sound thankful that it happened to them! All I can say it that I don' t understand people who are thankful for unnecessary damage to be inflicted upon themselves. Only someone who didn’t feel they were worthy or seriously deluded would think it was a blessing in disguise. Asherman’s syndrome was never ‘meant to be’. It only happens because many doctors are unwilling to offer alternatives to D&Cs and nothing is being done about it.
In my ‘journey’ I have learned a lot from having Asherman’s syndrome. I have learned that there is an urgent need for women to speak out against the routine use of D&C for miscarriage. I have learned that women should at the very least be given the right to choose which treatment option they prefer. I have learned that women must pressure doctors and the government to approve of all drugs which can help to safely evacuate the uterus and that these should be the first line of therapy for miscarriage and other indications instead of D&C. I have learned that not all doctors act in the best interest of their patients so patient activism is required for change.
Friday, July 3, 2009
Introduction: why blog about Asherman's syndrome?
This blog is dedicated to documenting and commenting on information and misinformation relating to Asherman's syndrome and its main cause, surgical evacuation of the uterus. I will also document information and misinformation about promising alternatives to surgical evacuation, particularly misoprostol which is a safe and effective non-invasive drug. Hysteroscopy is another alternative to D&C for retained products of conception from an incomplete miscarriage or retained postpartum placenta, as it allows the surgeon a direct view inside the uterus during surgery. Both are underutilized by doctors who treat early pregnancy failure.
The misnomer of Asherman's syndrome actually refers to a frequently iatrogenic (caused by medical treatment) condition known as intra uterine adhesions or IUA (ie adhesions inside the uterus) caused by injury to the endometrium (lining of the uterus). This injury produces scars on the delicate endometrial tissue which lead to adhesions and/or fibrosis of the endometrium leading to impaired fertility and future obstetric complications if pregnancy occurs. Although estimations are difficult due to a lack of awareness about the condition by doctors and patients alike, it is thought to affect approximately 5% of women. Over 90% of cases are caused by surgical evacuation of the uterus- this includes procedures and terms such as dilation and curettage (D&C), dilation and evacuation (D&E), suction curettage/evacuation, MVA (manual vacuum aspiration), or simply curettage. For the sake of simplicity I will refer to all types of surgical evacuations of the uterus collectively as "D&C". Asherman's syndrome can be caused by any uterine surgery and rarely by endometrial tuberuculosis infection, however my focus is on D&C because this is still considered 'standard care' for miscarriage management in the US, Australia and many other countries.
All or some of these procedures continue to be used for a host of gynecological conditions and pregnancy complications including:
-miscarriage
-postpartum retained placenta
-abortion
-endometrial biopsy
-heavy/abnormal uterine bleeding
-endometrial polyps
-investigation of gynecological cancers
-Asherman's syndrome (absolutely NOT the correct treatment!!!)
There are safer and often cheaper alternatives to D&C for all of the above.
Surgical treatment for Asherman's syndrome exists (hysteroscopic adhesiolysis and estrogen therapy), however overall birthrates remain disappointing for moderate to severe cases (around 30-40%). There is also very little research on optimizing and comparing treatments. Meanwhile there are many randomized controlled trials (RCTs) on using misoprostol for miscarriage management. Prevention is therefore the more logical approach.
I hope to make women aware of the dangers of this procedure and the existence of alternatives. There is a lot of misinformation about the condition due to both a lack of awareness and medically unfounded over-optimism about treatment outcomes.
Over the years women have become aware of the abuse and misuse of hysterectomies and alternatives thanks to activism. This blog aims to make people aware of a similar situation occurring with D&C. It is my hope that one day drugs will replace D&C worldwide for miscarriage management, or at least be offered as a first line of treatment.
The misnomer of Asherman's syndrome actually refers to a frequently iatrogenic (caused by medical treatment) condition known as intra uterine adhesions or IUA (ie adhesions inside the uterus) caused by injury to the endometrium (lining of the uterus). This injury produces scars on the delicate endometrial tissue which lead to adhesions and/or fibrosis of the endometrium leading to impaired fertility and future obstetric complications if pregnancy occurs. Although estimations are difficult due to a lack of awareness about the condition by doctors and patients alike, it is thought to affect approximately 5% of women. Over 90% of cases are caused by surgical evacuation of the uterus- this includes procedures and terms such as dilation and curettage (D&C), dilation and evacuation (D&E), suction curettage/evacuation, MVA (manual vacuum aspiration), or simply curettage. For the sake of simplicity I will refer to all types of surgical evacuations of the uterus collectively as "D&C". Asherman's syndrome can be caused by any uterine surgery and rarely by endometrial tuberuculosis infection, however my focus is on D&C because this is still considered 'standard care' for miscarriage management in the US, Australia and many other countries.
All or some of these procedures continue to be used for a host of gynecological conditions and pregnancy complications including:
-miscarriage
-postpartum retained placenta
-abortion
-endometrial biopsy
-heavy/abnormal uterine bleeding
-endometrial polyps
-investigation of gynecological cancers
-Asherman's syndrome (absolutely NOT the correct treatment!!!)
There are safer and often cheaper alternatives to D&C for all of the above.
Surgical treatment for Asherman's syndrome exists (hysteroscopic adhesiolysis and estrogen therapy), however overall birthrates remain disappointing for moderate to severe cases (around 30-40%). There is also very little research on optimizing and comparing treatments. Meanwhile there are many randomized controlled trials (RCTs) on using misoprostol for miscarriage management. Prevention is therefore the more logical approach.
I hope to make women aware of the dangers of this procedure and the existence of alternatives. There is a lot of misinformation about the condition due to both a lack of awareness and medically unfounded over-optimism about treatment outcomes.
Over the years women have become aware of the abuse and misuse of hysterectomies and alternatives thanks to activism. This blog aims to make people aware of a similar situation occurring with D&C. It is my hope that one day drugs will replace D&C worldwide for miscarriage management, or at least be offered as a first line of treatment.
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