Unfortunately, I can now talk from experience about how miscarriages can be dealt with post Asherman’s syndrome (AS), and what to expect. I lost my pregnancy at 14 weeks due to a trisomy 21 detected by karyotype analysis and QF-PCR of chorionic villi sampling. The first inkling that something was wrong was at the 12 week scan. Actually, the blood serum levels of PAPP-A and bHCG I’d had during the 11th week already showed a problem, but it wasn’t until my ultrasound that I learned of this. The ultrasound only confirmed that things were not right. Only two weeks earlier I’d had another ultrasound and all seemed fine- the heart beat, the CRL, etc. Now the nuchal fold measured 7mm and there was hydrops- an accumulation of fluid around the fetus. I was told there was a high probability that the pregnancy would end spontaneously.
Fast forward to week 14 and there was no longer a heartbeat.
I’d always talked about misoprostol and ironically now I would have to use it myself. There was no way on earth I’d undergo another D&C (suction curettage or whatever you want to called this blind invasive procedure)- the procedure which caused Asherman’s syndrome when I had it 3 years earlier for a blighted ovum. I could not risk exacerbating the condition. If only my initial ObGyn had agreed to treat me with misoprostol I could have avoided all the surgery and heart ache that followed. I’m quite sure I’d have a child by now.
Since I was relatively far into the pregnancy and the fetus had developed to 14 weeks before dying spontaneously, I booked in the hospital for the misoprostol induction. I don’t know which hospitals/ObGyns use misoprostol regularly, however, in the interest of informing women, my procedure was performed at the Royal Hospital for Women in Randwick (Sydney). I’m sure there are other hospitals (and doctors) that are familiar with misoprostol use, and yes, it is completely legal even if it has not been approved by the TGA (Australia's equivalent of the FDA) for gynecological indications for dubious reasons. By the way, the doctor who refused to give me misoprostol works at St George Hospital. I’d be interested to know if that hospital carries out medical management of miscarriage- please drop me a line or comment below if you know.
In total, I was given a dose of 1 mg (milligram) of misoprostol over the course of a day. Initially, one pill ie. 200 mcg (vaginal) was given to test for any adverse reactions, allergies etc. I began cramping but there was no bleeding. About 5 hours later cervical dilation was checked (closed) and I was given 400 mcg (2 pills). The cramping intensified, but again, there was no bleeding. Shortly after my third and final dose, about 5 hours after the last dose, I began having strong contractions. It was quite painful so I’d definitely recommend panadeine forte. Strangely, there was still no bleeding unlike with my first miscarriage which began like a period. About 40 minutes after my final dose, the waters broke and amniotic fluid spilled out soaking the bed. After this point the pain stopped although I was still feeling crampy for at least a week afterwards. Roughly half an hour after the waters broke, I delivered the tiny baby. The umbilical cord was thin and weak and broke off from the placenta. It is at this point that I began bleeding. I continued bleeding heavily throughout the night and the next day. I also bled strongly for about a week afterwards and on and off during the following week. The placenta should have come out soon afterwards but it was not until 3.5 hours passed that it did. Luckily I’d discussed the possibility of retained placenta previously with my ObGyn and we agreed to wait it out (normally most doctors would jump at the opportunity to do a D&C in this situation) while the nurses and midwives monitored me closely for signs of infection and hemorrhage. As it’s difficult to know if the placenta is complete on visual inspection, and women with a history of Asherman’s syndrome- even after surgical correction- are at an increased risk of placental conditions such as placenta accreta, percreta, increta, and previa, I knew retained placenta was a possibility.
Before the placenta delivered my temperature reached 40 C and the midwife was somewhat concerned, however misoprostol itself can cause fever. The morning after, my blood pressure was 90 on 60 (normally it is around 110-115/65-70) and I was told this could be due to blood loss.
The next morning I underwent an ultrasound to check for retained placental fragments. Around 32 mls of material was found in the uterus but it was impossible to tell whether this was simply blood and blood clots, or if there were retained products of conception (RPOC). Doppler flow analysis suggested that there were retained placental fragments in the posterior of the uterus- the same area where the placenta had implanted in this pregnancy. I had another ultrasound a week after the first. The second ultrasound showed that the fluid in the uterus had roughly halved, but it was still not possible to tell for sure via ultrasound whether there were retained products.
In the following week I bled little despite having around 18 mls of content in my uterus so I became concerned that perhaps there were retained fragments. This would not be a surprise given my pregnancy reached second trimester and my previous history of Asherman’s syndrome. I contacted my trusted Asherman’s syndrome specialist for a hysteroscopic procedure to remove any retained fragments of placenta. This procedure was done 3 weeks after the misoprostol treatment. It turns out I did have many retained fragments which were gently scraped off using the hysteroscope itself. Luckily I did not have any clinical infection from the retained tissue (perhaps just 'subclinical' ;) ?). There were no adhesions. I was given prophylactic antibiotics to prevent infection after the surgery.
I should also mention that to prevent any possible adhesions, I was prescribed 2mg/day progynova (a synthetic estrogen) for 28 days by an Asherman’s syndrome specialist. The other option was Premarin (0.625 mg). These help the endometrium grow and thereby prevent uterine walls from adhering in the case of scarring.
I’m now awaiting my next period after which I’ll have a mid cycle scan to measure endometrial thickness at ovulation, and either an in--office hysteroscopy or an HSG to check for adhesions. Hopefully the removal of RPOCs did not cause any scarring.
Note that the dose of misoprostol I was given was decided according to my pregnancy stage (14 weeks) and status (fetal demise). Doses vary and guidelines should be adhered to.
Here is a summary of my suggestions (as a non MD) if you find yourself in this situation:
1. Don’t have a D&C for a miscarriage as it can cause further damage especially if you have had AS previously. Also, your endometrium may get thinner each time you have a D&C.
2. Misoprostol helps clear out most of the uterine contents. It is more painful than a D&C but worth it in the long run- unless you are not interested in preserving your fertility. NOTE: If you have had a previous Cesarean section or uterine perforation or severe AS, discuss with your ObGyn to see if misoprostol is safe for you (or you may need to take a lower dose than what I was given).
3. You should have estrogen therapy to prevent adhesions from forming. I'm not sure if this is 100% necessary but Asherman's specialists recommend it. Some women didn't use it because of adverse reactions to estrogen (blood clots etc.) and they did not develop adhesions.
4. You will probably have retained tissue and require a hysteroscopy (not a blind D&C!!) to remove it. In most cases if you have had a missed miscarriage you will need to either use misoprostol or, alternatively, wait to miscarry before hysteroscopy can be effective, otherwise there is just too much tissue and blood to work with.
5. Have a mid cycle scan to measure endometrial thickness after your first post-treatment period and always check that your uterine cavity is free of adhesions before you attempt to conceive again just in case. An in-office hysteroscopy is best but failing that, an HSG can be done.
There are also some implications that can be speculated:
1. It may take a few hours for the placenta to deliver when using misoprostol post AS if you are beyond the first trimester.
2. It is likely that if you have had AS, you will have retained products after every future miscarriage. Hysteroscopic removal of tissue allows the doctor to view your uterus as he/she clears it. Note: Hysteroscopy itself can cause complications if undertaken by an unexperienced or unskilled doctor. Please see only a highly experienced specialist.
3. You should anticipate that you may have placenta accreta in a future pregnancy particularly if the placenta does not deliver when expected or you have had confirmed RPOC. Obviously, any woman with past AS should be monitored throughout their pregnancy by a high-risk Obstetrician.
I will try to write about the known pregnancy complications in women with a history of AS in the near future.
There are two more interesting points: Initially I believed that I may not get RPOC because the placenta had implanted in a region which was never affected by intrauterine adhesions. The fact that it is possible to get RPOC in a new, previously unaffected area suggests that perhaps the placenta implants deeply because the endometrium is slightly thinner than it should be ideally. Or maybe blood flow to the uterus is somehow affected and in order for the pregnancy to establish the placenta needs to invade the endometrium more deeply.
Secondly, I have to question once again whether there is any truth at all to the unfounded claim by certain doctors that Asherman’s syndrome can occur ‘spontaneously’ after miscarriage. I would have to have actual evidence to believe this. In my own case I had no adhesions 2 weeks after miscarrying using misoprostol-and this is even after having had intrauterine adhesions in the past (from a D&C). In other words they did not reoccur, nor did any new ones develop. I suspect that if I was treated with blind D&C rather than misoprostol, lo and behold I would develop ‘spontaneous’ adhesions in a new region: the posterior region of my uterus (where the RPOC were). It doesn't make sense for such an evolutionarily destructive mechanism to occur in nature (unless extremely rarely).
In retrospect, I have to wonder why my first Obgyn (ie the one who caused me to have AS) so steadfastly rejected my request to use misoprostol instead of a D&C when it can be used even until the third trimester. He made me believe that it could only be used until 8 or 10 weeks. I also wonder why, as a doctor who was aware about Asherman’s syndrome, my strong concern about acquiring it, and knew of the Asherman’s syndrome support group, he did not refer me for a hysteroscopic removal the supposed RPOC I had? What, may I ask, is the purpose of informing gynecologists about Asherman’s syndrome if they will continue to perform damaging D&Cs while refusing to offer other options? ‘Consent’ for D&Cs is hardly possible when other options are not made available. Please, let us not make Obstetricians/gynecolgists believe that treatment is so simple and effective that causing Asherman’s syndrome is just a little glitch with few consequences for the patient.
Finally, my experience has shown once again that prevention of Asherman’s syndrome is best: the condition leads to a cycle of costly and lengthy complications with retained products (not to mention possible obstetric complications in future pregnancies) which could be avoided if medical management (ie. misoprostol) was used in the first instance.
Showing posts with label D and C. Show all posts
Showing posts with label D and C. Show all posts
Tuesday, December 15, 2009
Tuesday, September 15, 2009
‘Victims’ in miscarriage headlines are luckier than they think
Oh no. Not another story about a woman who goes to hospital emergency with an impending miscarriage and gets given painkillers and told to go home (click here for 'story'). Or miscarries in the hospital toilet. I don’t know why, but Sydney newspapers abound with such stories. It started off with the famous Jana Horska story. Yesterday I read in the Sydney Morning Herald that women will now be offered D&Cs straight away. OK, I’ve kept silent long enough. When women think that miscarriage and the pain that goes with it are the worst things than can happen to them, I must enlighten them about Asherman’s syndrome. Especially when their complaints have prompted hospitals to consider carrying out even more D&Cs, the number one cause of Asherman’s syndrome.
One in four pregnancies ends in miscarriage. I too had a miscarriage so I know what I’m talking about. I was around 14 weeks into the pregnancy. Mine was a missed miscarriage detected via ultrasound at 11 weeks. The fetus either died (fetal demise) and was resorbed or stopped developing very early on (anembryonic gestation). I was offered a D&C straight away by my ObGyn. I recalled vaguely hearing about the risks of D&C and future fertility. I was 39 and was not about to take a chance. My ObGyn insisted that Asherman’s syndrome and uterine perforation were ‘extremely rare’ (see what the real incidence rates are. Not rare at all!). Still, if there was a chance I could avoid it altogether by waiting to miscarry naturally, I would take that option. I had no other choice as he flatly refused to give me medication (misoprostol). The ObGyn was visibly irritated and disappointed in my choice to avoid a D&C.
The shock and sadness of losing the pregnancy was soon replaced with impatience to miscarry naturally so I could avoid a D&C, and start trying to conceive again with my fertility intact. My goal was to avoid a D&C at all costs. I was relieved when one Sunday morning about 3 weeks later, I finally began to bleed. At first it was like a normal period. As the day progressed the bleeding got heavier, and so did the cramps. By 11 PM I could no longer contain my cries of pain. My husband shut the windows, worried the neighbours might think he was beating me! Finally around midnight when I could no longer stand the pain I sent my husband to an all night pharmacy to get the strongest painkiller available without prescription. He tried to convince me to go to the hospital instead. “Are you nuts?” I retorted. “They’ll just tell me to have a D&C”. Not only that, but I’d have to stifle my moans and sit upright in uncomfortable clothes, surrounded by strangers and without access to a clean toilet. At home I could make as much noise as I wanted in my loose nighty and stand on all fours if that was the most comfortable position. The toilet was less than a meter from my bed and I wouldn’t have to compete with 50 other patients for it while waiting in emergency. He came back with a box of Panadeine forte containing codeine and that took the edge off the labour-like cramps. At some point after midnight I felt a ‘pop’ and instantaneous relief. Instinctively I knew the gestational sac must have burst and I rushed to the toilet. I continued to bleed heavily but was glad everything was coming out.
Later that day I had an appointment with the ObGyn who seemed rather disappointed that I miscarried by myself. Somewhat wistfully, he said that on ultrasound it appeared that there was no remaining tissue. What a relief that was to hear. But for some reason, he insisted I return a few days later to make sure everything was OK. When I returned later that week his story changed. This time he said it appeared that I had large ‘products of conception’ and that I had no other choice than to have a D&C. What??? I asked about drugs again. He refused again, saying they would be ‘ineffective.’ Reluctantly, I had the D&C, got stage 3 Asherman’s syndrome and the rest is history. (Here’s my story).
I’m convinced that the D&C was needless. I lost my fertility for no reason at all.
I wonder if these women who are sent home without a D&C realize how lucky they are to not go through what I did? Instead of noticing something is wrong with their periods, or are no longer able to conceive or miscarry repeatedly… instead of having to find a doctor who believes them and who is aware about the existence of Asherman’s syndrome and is trained to diagnose it with hysteroscopy… instead of having to undergo hysteroscopic surgery and hormone therapy to remove adhesions and salvage any viable endometrium in the hope that they will be able to have a baby in future… they get to try to conceive again right away with any complications whatsoever! And they’re the ones who are complaining! As a victim of D&C, I guarantee you, a miscarriage is nothing compared to the pain of possible loss of fertility and serious future pregnancy complications from D&C.
I wonder, do these women realize that there is absolutely nothing any hospital or doctor can do to stop the miscarriage from happening? They probably miscarried because the babies were not normal and there is unfortunately nothing that can change that. If they really want to be of help, they should insist that hospitals offer medical management with misoprostol and mifepristone in addition to expectant management, which also evacuates the uterus safely. Instead, I fear their indignant cries have resulted in a policy to systematically use D&C to manage miscarriage and will result in an increase in Asherman’s syndrome cases.
When will the lesson be learned? What is the world coming to when no one says a word about the risks of reproductive mutilation from systematic blind D&C, yet C-sections and male circumcision are made out to be the most dangerous,needless and wicked surgery known to humankind?!
Related link:
Here is a youtube clip I made about miscarriage management
This is another website which aims to raise awareness about the risks of D&C: http://www.dandcnow.info/
One in four pregnancies ends in miscarriage. I too had a miscarriage so I know what I’m talking about. I was around 14 weeks into the pregnancy. Mine was a missed miscarriage detected via ultrasound at 11 weeks. The fetus either died (fetal demise) and was resorbed or stopped developing very early on (anembryonic gestation). I was offered a D&C straight away by my ObGyn. I recalled vaguely hearing about the risks of D&C and future fertility. I was 39 and was not about to take a chance. My ObGyn insisted that Asherman’s syndrome and uterine perforation were ‘extremely rare’ (see what the real incidence rates are. Not rare at all!). Still, if there was a chance I could avoid it altogether by waiting to miscarry naturally, I would take that option. I had no other choice as he flatly refused to give me medication (misoprostol). The ObGyn was visibly irritated and disappointed in my choice to avoid a D&C.
The shock and sadness of losing the pregnancy was soon replaced with impatience to miscarry naturally so I could avoid a D&C, and start trying to conceive again with my fertility intact. My goal was to avoid a D&C at all costs. I was relieved when one Sunday morning about 3 weeks later, I finally began to bleed. At first it was like a normal period. As the day progressed the bleeding got heavier, and so did the cramps. By 11 PM I could no longer contain my cries of pain. My husband shut the windows, worried the neighbours might think he was beating me! Finally around midnight when I could no longer stand the pain I sent my husband to an all night pharmacy to get the strongest painkiller available without prescription. He tried to convince me to go to the hospital instead. “Are you nuts?” I retorted. “They’ll just tell me to have a D&C”. Not only that, but I’d have to stifle my moans and sit upright in uncomfortable clothes, surrounded by strangers and without access to a clean toilet. At home I could make as much noise as I wanted in my loose nighty and stand on all fours if that was the most comfortable position. The toilet was less than a meter from my bed and I wouldn’t have to compete with 50 other patients for it while waiting in emergency. He came back with a box of Panadeine forte containing codeine and that took the edge off the labour-like cramps. At some point after midnight I felt a ‘pop’ and instantaneous relief. Instinctively I knew the gestational sac must have burst and I rushed to the toilet. I continued to bleed heavily but was glad everything was coming out.
Later that day I had an appointment with the ObGyn who seemed rather disappointed that I miscarried by myself. Somewhat wistfully, he said that on ultrasound it appeared that there was no remaining tissue. What a relief that was to hear. But for some reason, he insisted I return a few days later to make sure everything was OK. When I returned later that week his story changed. This time he said it appeared that I had large ‘products of conception’ and that I had no other choice than to have a D&C. What??? I asked about drugs again. He refused again, saying they would be ‘ineffective.’ Reluctantly, I had the D&C, got stage 3 Asherman’s syndrome and the rest is history. (Here’s my story).
I’m convinced that the D&C was needless. I lost my fertility for no reason at all.
I wonder if these women who are sent home without a D&C realize how lucky they are to not go through what I did? Instead of noticing something is wrong with their periods, or are no longer able to conceive or miscarry repeatedly… instead of having to find a doctor who believes them and who is aware about the existence of Asherman’s syndrome and is trained to diagnose it with hysteroscopy… instead of having to undergo hysteroscopic surgery and hormone therapy to remove adhesions and salvage any viable endometrium in the hope that they will be able to have a baby in future… they get to try to conceive again right away with any complications whatsoever! And they’re the ones who are complaining! As a victim of D&C, I guarantee you, a miscarriage is nothing compared to the pain of possible loss of fertility and serious future pregnancy complications from D&C.
I wonder, do these women realize that there is absolutely nothing any hospital or doctor can do to stop the miscarriage from happening? They probably miscarried because the babies were not normal and there is unfortunately nothing that can change that. If they really want to be of help, they should insist that hospitals offer medical management with misoprostol and mifepristone in addition to expectant management, which also evacuates the uterus safely. Instead, I fear their indignant cries have resulted in a policy to systematically use D&C to manage miscarriage and will result in an increase in Asherman’s syndrome cases.
When will the lesson be learned? What is the world coming to when no one says a word about the risks of reproductive mutilation from systematic blind D&C, yet C-sections and male circumcision are made out to be the most dangerous,needless and wicked surgery known to humankind?!
Related link:
Here is a youtube clip I made about miscarriage management
This is another website which aims to raise awareness about the risks of D&C: http://www.dandcnow.info/
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.
Thursday, July 23, 2009
Law suits and Asherman's syndrome: another failure for victims
You would think that if a ObGyn that performed a 'straightforward, routine' D&C which resulted in intrauterine adhesions and infertility (ie. Asheman's syndrome) you would have legal recourse. Think again. The vast majority of these cases end up with the patient not winning any damages. Incredible but, sadly, true. This is why I am so gung-ho on replacing D&Cs with drug alternatives which currently exist. It's simple madness to go through with a D&C which can decimate your fertility while the doctor gets away with it scot free. No wonder D&C continues to be such a popular surgery- there is no incentive to stop or at least be a little more discrimminating in its use when doctors are not held accountable for the outcomes. So simple too, even an intern can do it and no one will find out if it was a disaster until the damage is already done!
I would love for there to be an open list of doctors who caused Asherman's syndrome from D&Cs that were deemed to be simple and straighforward, not in any life-threatening emergency situation, for example (I'm more sympathetic to doctors who faced emergencies). This list would at least warn other women to avoid those doctors and have well-deserved repercussions on their wallets. It is afterall, their duty to care for their patients and not cause them harm and if they caused Asherman's syndrome from such a 'straightforward' procedure, they clearly breached their contract as a medical professional.
OK, I contend that it is difficult, maybe impossible, to not cause any damage from a D&C when you are poking objects into a small, soft, and fragile organ you cannot even see. But this is my point: if doctors want to continue pretending that it's acceptable to do D&Cs and stubbornly refuse to offer cheaper and less invasive drugs or a visually guided method like hysteroscopy, they should be held responsible for the consequences. As the situation stands, they continue to have their cake and eat it too. D&Cs, unlike hysteroscopy, do not require much skill (it’s hard to judge the outcome when the organ is concealed), and unlike misoprostol, it is financially rewarding to hospitals, Gyns/ObGyns, and anesthesiologists. Why would they want to work harder than they already do or earn less?
So why do these legal suits lose? One obvious reason is that medical malpractice suits have always been difficult to win because doctors are very well protected. Doctors are extremely supportive of each other and it is difficult to find a doctor who is willing to give expert medical advice in a case implicating a peer. This probably stems from reciprocity: "I'll scratch your back, if you scratch mine." Who knows if said medical expert will not face a malpractice suit (justified or not) some time in their career...
What perplexes me is that a lawyer can take on a medical case without having a medical or scientific degree or understanding basic health issues. Come to think of it, it is also somewhat disturbing that doctors don't need to be taught how to think objectively and critically to practice medicine, but I digress...
Defense lawyers and doctors will come up with all sorts of excuses to dismiss a valid medical case against them. This is where the Asherman's syndrome myths come in so handy. They are ‘facts’ which continue to be accepted without real evidence, often hypothesized decades ago at a time when well respected doctors in the field could formulate opinions without any scientific basis or need for clinical trials (no wonder some of them developed a ‘God complex’) and their peers believed them and even today continue to cite their published theories in the guise of ‘evidence’ in peer-reviewed medical journal articles. These opinions, in particular about Asherman’s syndrome, have over the years transformed into ‘dogma’ which medical school students are indoctrinated with. Somehow no one ever asks “Why are we blindly accepting what this doctor 50 years ago suggested when they didn’t have the advances in knowledge, diagnostic/surgical tools and understanding of evidence based medicine that we have today? ” Which leads me to wonder, as medicine is becoming more and more scientific in nature (evidence-based medicine), will this change the expected outcomes of some cases? I think it will inevitably do so. But there is still a long way to go.
I also wanted to mention a legal perspective which has always riled me in relation to Asherman's syndrome (I would think it also applies to other medical injuries affecting fertility): in a court of law where the nature of injury and of suffering are apparently graded, it makes no difference whether you had 10 children or none before the injury leading to infertility. Now, I know from the Asherman's International Support Group that such an attitude is promoted to keep the peace and encourage bonding (“we’re all in the same boat”), but to think that the law makes no distinction between someone who has been prevented from ever reproducing (a basic human right according to the United Nations charter) and someone who has done so is just plain cruel. There is no 'scientifically correct' answer to this, but one would think that the logical and instinctive answer is that the condition has more consequences for those who never had children before the injury than those who have.
It is difficult to find information about Asherman’s syndrome law suits on the internet, and judging by the number of visits this particular entry gets, it would appear to be an area that many women would like to learn more about. I have downloaded the few articles on lawsuits I have been able to find and will write another blog entry (one day) about what I find out from them. From a quick scan though, what I can say is that it appears that most of the successful lawsuits do not stem from injury of the D&C per se which caused Asherman’s syndrome, but from ‘negligence’ of a doctor to correctly identify and remove retained products of conception/placenta. It would appear that the law considers D&Cs an inherent risk, although curiously, women who give their ‘informed consent’ are rarely told of the specific risks of Asherman’s syndrome or the correct incidence rates.
The failure of justice for Asherman’s syndrome sufferers who underwent routine D&Cs for standard care is yet another argument in favour of Asherman’s syndrome prevention by replacing D&Cs with medical management or hysteroscopy…
I would love for there to be an open list of doctors who caused Asherman's syndrome from D&Cs that were deemed to be simple and straighforward, not in any life-threatening emergency situation, for example (I'm more sympathetic to doctors who faced emergencies). This list would at least warn other women to avoid those doctors and have well-deserved repercussions on their wallets. It is afterall, their duty to care for their patients and not cause them harm and if they caused Asherman's syndrome from such a 'straightforward' procedure, they clearly breached their contract as a medical professional.
OK, I contend that it is difficult, maybe impossible, to not cause any damage from a D&C when you are poking objects into a small, soft, and fragile organ you cannot even see. But this is my point: if doctors want to continue pretending that it's acceptable to do D&Cs and stubbornly refuse to offer cheaper and less invasive drugs or a visually guided method like hysteroscopy, they should be held responsible for the consequences. As the situation stands, they continue to have their cake and eat it too. D&Cs, unlike hysteroscopy, do not require much skill (it’s hard to judge the outcome when the organ is concealed), and unlike misoprostol, it is financially rewarding to hospitals, Gyns/ObGyns, and anesthesiologists. Why would they want to work harder than they already do or earn less?
So why do these legal suits lose? One obvious reason is that medical malpractice suits have always been difficult to win because doctors are very well protected. Doctors are extremely supportive of each other and it is difficult to find a doctor who is willing to give expert medical advice in a case implicating a peer. This probably stems from reciprocity: "I'll scratch your back, if you scratch mine." Who knows if said medical expert will not face a malpractice suit (justified or not) some time in their career...
What perplexes me is that a lawyer can take on a medical case without having a medical or scientific degree or understanding basic health issues. Come to think of it, it is also somewhat disturbing that doctors don't need to be taught how to think objectively and critically to practice medicine, but I digress...
Defense lawyers and doctors will come up with all sorts of excuses to dismiss a valid medical case against them. This is where the Asherman's syndrome myths come in so handy. They are ‘facts’ which continue to be accepted without real evidence, often hypothesized decades ago at a time when well respected doctors in the field could formulate opinions without any scientific basis or need for clinical trials (no wonder some of them developed a ‘God complex’) and their peers believed them and even today continue to cite their published theories in the guise of ‘evidence’ in peer-reviewed medical journal articles. These opinions, in particular about Asherman’s syndrome, have over the years transformed into ‘dogma’ which medical school students are indoctrinated with. Somehow no one ever asks “Why are we blindly accepting what this doctor 50 years ago suggested when they didn’t have the advances in knowledge, diagnostic/surgical tools and understanding of evidence based medicine that we have today? ” Which leads me to wonder, as medicine is becoming more and more scientific in nature (evidence-based medicine), will this change the expected outcomes of some cases? I think it will inevitably do so. But there is still a long way to go.
I also wanted to mention a legal perspective which has always riled me in relation to Asherman's syndrome (I would think it also applies to other medical injuries affecting fertility): in a court of law where the nature of injury and of suffering are apparently graded, it makes no difference whether you had 10 children or none before the injury leading to infertility. Now, I know from the Asherman's International Support Group that such an attitude is promoted to keep the peace and encourage bonding (“we’re all in the same boat”), but to think that the law makes no distinction between someone who has been prevented from ever reproducing (a basic human right according to the United Nations charter) and someone who has done so is just plain cruel. There is no 'scientifically correct' answer to this, but one would think that the logical and instinctive answer is that the condition has more consequences for those who never had children before the injury than those who have.
It is difficult to find information about Asherman’s syndrome law suits on the internet, and judging by the number of visits this particular entry gets, it would appear to be an area that many women would like to learn more about. I have downloaded the few articles on lawsuits I have been able to find and will write another blog entry (one day) about what I find out from them. From a quick scan though, what I can say is that it appears that most of the successful lawsuits do not stem from injury of the D&C per se which caused Asherman’s syndrome, but from ‘negligence’ of a doctor to correctly identify and remove retained products of conception/placenta. It would appear that the law considers D&Cs an inherent risk, although curiously, women who give their ‘informed consent’ are rarely told of the specific risks of Asherman’s syndrome or the correct incidence rates.
The failure of justice for Asherman’s syndrome sufferers who underwent routine D&Cs for standard care is yet another argument in favour of Asherman’s syndrome prevention by replacing D&Cs with medical management or hysteroscopy…
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