This is a guest post by a patient I admire a lot !

Dear Dr. Malpani,

Two days ago when I came back to your clinic you asked me to write about my experience with Julia.
Today I took the time and I started to write my history you can use parts of the letter or the full letter to publish at your newsletter and share with other patients.

Three failed IVF cycles in Europe one failed cycle in India and one cornual ectopic pregnancy I am back at the clinic of Dr. Malpani to go through my last IVF cycle. This time I will be pregnant and I will carry the baby to term without complications.

After three failed IVF treatments in Europe in the year 2010 and 2011 I was completely disappointed from my doctors and the clinic I went, I had no trust anymore into doctors and clinic and no hope towards getting our baby.

A friend of us told us about Dr. Malpani and his clinic in India, I went to the internet and found his homepage. I wrote to him about my situation and immediately we got a reply.

Dr. Malpani recommended certain things and he advised to read the book “Inconceivable” from Julia Indichova.

After ordering the first book “Inconceivable” in August 2011 I was so addicted to what Julia was writing that I started immediately to stop drinking coffee and alcohol and drinking every morning a fresh vegetable/fruit juice.  A few weeks later I ordered the other book “The Fertile Female” and all CD’s with the Imagery exercise and the Body Truth exercise and tried to practice it.

I scheduled another IVF cycle in the clinic of Dr. Malpani in India in March 2012, I was completely convinced that this time it will work, I got so much hope and I was confident with all the preparation I did, like acupuncture, drinking herbal tea etc.

The cycle was for my history good and we had 4 nice embryos to transfer but unfortunately the outcome was negative.

Again we tried to understand what happened and we had many questions to ask for Dr. Malpani which he couldn’t answer, because there is no precise answer for a failed cycle. All what he could tell us is, that everything progressed normally but maybe my eggs are too old. One reason for this is my age and my low AHM level which indicates a poor responding of the ovaries in case of super ovulation. One other option for us would be to go for donor eggs, which was not an option for me at this stage. My husband was more open for it.

Of course I didn’t like the answer and I was not willing to give up I was thinking there must be something else what can help me. The next thing what I did, I went back to Julias homepage (www.fertileheart.com) and I booked a teleconference circle with her, which she is offering in her fertile heart program.

I sent her a mail with my history before the call so that she knew my past and that she was able to work with me during the call. The conf call circle is not a single private session - it is a circle of women who are struggling with the same theme, unexplained infertility, miscarriages, failed IVF cycles etc.

In the phone circle , Julia is practicing birthing of all kind of creatures but what is very important to know she is working with all of us on each individual level in the same time she is practicing the different fertile tools like imagery in the group.

During the first conf call circle I was so touched and after she worked with me I was emotionally completely shattered and it was clear for me I needed to go and see her in the USA where she is offering a one day work shop for infertile women and couples.

Our journey began, we booked a flight to NY and we, my husband and I, drove up to Woodstock where she is living. She has a beautiful studio in her house and all her clients are welcomed in her private house/kitchen/ dining room for the day. What a kind of openness!

The workshop cannot be described, everybody should have the chance to experience it, it is so individual, so different, so warm, so loving the work she is doing and the energy and passion she gives to each single individual person in that room for a full day. So many dramatic stories, so many tears, so many doubts and fear from each single person and at the end all our bodies are shaken up and turned upside down female as well as male.

After this workshop, getting to know Julia and many loving women and couples we went home, we were light, full of faith, full of hope, full of knowledge like there is nothing like old eggs or malfunctioning bodies all what is needed to feed your body with the right remedies.

Good healthy food, good vitamins, self loving passion to be able to create new energy and raise the energy level to let the body rejuvenate itself and a  good portion of imagery and body truth.

After the workshop in May 2012 I changed my lifestyle again, I stopped eating meat and started a vegetarian diet, I stopped eating dairy products and white flour and implemented a good Vitamin product in my daily program and of course practicing each single day some of the imagery exercise from Julia inclusive body truth.

In August 2012 I felt ready to go for another IVF; in my case needed because I have no fallopian tubes anymore, no chance for a natural pregnancy. This time I approached the whole treatment in a different light, I was not putting myself under pressure because I knew I had done all I could do - and the rest was not in my hand.

My husband and I , we took the time to travel to India and to take it as a vacation trip and the IVF treatment as a side business. My husband had to go back even during the process and I was alone for the egg retrieval and the transfer but this didn’t affect me, I felt good. We had two wonderful embryos which were transferred.

This time no one will believe it, after all the negative prognosis, I was pregnant and the hormone levels indicated a healthy pregnancy. Unfortunately the happiness didn’t last long during the sixth week I had to go to the hospital because of extreme pain and the result of the examination was a cornual ectopic pregnancy (the embryo implanted in the far corner of the uterus where the tube meets the uterus). This area is where the uterus lining is very thin and it is not possible for the embryo to implant and to sustain a healthy pregnancy. In my case I had already starter internal bleeding. The pregnancy had to be stopped with a medical intervention.
For my husband and me the world broke apart !  In one moment , we were forced to stop this long awaited pregnancy ! We had to stop this much wanted baby from growing because it was just not implanted at the right place.

After all this I had no hope anymore, no faith, no energy to go further and we asked our self, especially me - what did I do wrong to go through all this ? And there was no answer for this question.
There was only the faith in God and that he will lead us to the journey which is planned for us in our life. This was the only way to accept.

After a few weeks at home to recover from the inner bleeding and a few weeks of grieve we started again to go back to normal life what was very difficult for me but “where is hope there is a way”. Life needs to go on and it is our destiny to continue on our journey.

I went back to join the conf call circle with Julia , who was the only light at this moment for me. I could share my pain, my grieve, my anger, my frustration with someone and with the fertile heart community and this helped me a lot. All these women are going through similar situations , and they can understand very well what it means to go through such a difficult time with all these emotions and pain.

The first two phone circles I couldn’t speak - the pain was too much and I started immediately to cry.
But after the third circle I was able to share my story and to work with Julia on all the doubts, the pain, the beliefs and misbeliefs - and she helped me to go back to my heart and ask myself what are the next steps to continue. Of course the answer was not there immediately , but time after time it became clear to me - it is to trust in myself, to trust in God, to trust in the invisible life force and to believe in the good of the world.

What Julia tries to achieve with her work and her tools, all her energy invested and with all her love is to create a better world, a better world for the yet unborn babies, a better world for everybody …and for this she needs to have a strong community behind her who will help her to achieve this.

All this made me to go on and to believe in the future . Now 6 month later , I am strong enough and filled with all the love I received from the fertile heart community and from all around me to be able to go through another IVF cycle. I hope to be able to hold my baby soon in my arms.

I am very convinced all what is happening has a reason and if it’s only to make us stronger and later better parents for our children and better persons in this world.  

 A lot of Love C

[email protected]

My IVF journey - a first hand account from a patient

This is a guest post . The writer was inspired to pen this after reading Manju's blog at www.myselfishgenes.blogspot.com. She sent this to Manju, and I asked for her permission to reproduce this.

I hope more patients will start documenting their experiences. Not only is this helpful for them ( because it allows them to vent ), it also provides them with a platform to share their hard-earned learning , so they can help other patients, so they do not repeat their mistakes !

It articulates very clearly what infertile patients go through . I do wish all IVF doctors would read it too, so they would be a little more compassionate !

I have deliberately not edited this - it's a very personal first person account. ( English is not her first language, so please overlook the grammatical errors and listen to her heart).

--------------

Hi,

I never share what I feel throughout my ivf journey with anyone. It’s very difficult to express in words...But my experience is not that long and terrific like others. When I read other women experience on Ivf forums, I feel mine is nothing. But the impact of this short learning period is much deeper in my heart. I thought after marriage everybody gets pregnant easily. I never saw a couple struggling for baby at my native place. Never heard of this word IVF...I was completely unknown about these infertility treatments. But six months after marriage I feel that I need a baby. I was thinking why not happening .Started reading on internet how to get pregnant fast ... Waited for one year. As I am 29 and hubby is 36 year old. So I convinced my hubby for regular basic check up. He was not ready for that. I had done ultrasound scan for first time in my life.I felt so awkward .Dr told me that there was a uterine polyp of 1cm.and ovary seems polycystic. I asked my doctor - Is this a reason for not getting pregnant? She said not sure...But it has to be removed. My hubby’s SA test was scheduled but he thought first we will do this procedure ...I think we should have been taken opinion of other doctors also. But my hubby was not involved in this process. I went alone for scan also. He thought that I should wait for a year or so.

Then our doctor told us to try for a baby soon after the procedure then she added it might take one and half year.We tried but unsuccessful .Then I forced my hubby for SA test. His report was also not great. Low motility, morphology .Only 16 million counts. In that abnormal count is more. She said it is sufficient for pregnancy but It will take time.Conceiving naturally with this count is little difficult. She gave lots of medicine to both of us. But after few months we visited her again.That time she suggested us IUI with injection and medicines. Before IUI procedure we found in SA test that my DH’s count was 13 million only after taking so much of vitamin tablet. From that moment my DH skipped all the medicine. That was fine for me.

Her clinic was ok but she didn’t have that proper OT table for procedure. Overall procedure was very uncomfortable and painful for me .That was a first failed IUI cycle. After that we took a 4 months gap. My husband promised me that he will maintained good and healthy lifestyle to improve sperm quality...after reading on internet that some women got positive result in their second or third try of iui I decided to go for second try. Before taking a meds I confirmed twice from DR that my DH count was sufficient for iui. Her answer was yes. But just after the procedure she said that quality and quantity is not good enough for
iui .Then she gave SA report to me. I saw value in that report was same which was mentioned in previous report. I didn’t understand if she knew it before the procedure that this much count was not sufficient then why she made us to spend 20 k for it. It was also a failed cycle. Then I was telling my hubby that we should change our doctor. I searched on internet But I didn’t find any good doctor in Bangalore...Every Dr. Profile had bad review. I was so confused. My DH was not with me in this search operation.He told me whatever u decide I will do it.

My hubby thinks now also that all are fake reports or lack of valid theory and there is no problem in his count. He thinks something is wrong with my uterus acceptance.

And whenever I showed our report to any doctor in Bangalore .They said that there is problem in my hubby’s count. I can be pregnant but not sure .But I don’t want to listen about the problem that he has I want solution because I love him I want a baby from him.

Because of all this I quit my job I thought work pressure was not good in a conceiving stage .I was working with Animation Company in Bangalore...Mine was love marriage but it was arranged by our family .They are not happy from us. We thought everything will be fine when we will have a baby but after this infertility struggle for 4 years without anybody’s support I was so frustrated and I started blaming myself and my hubby. I told him so many times that because of him I am facing this trouble and we married without our parents’ wish that’s because their blessing was not with us. But after talking like this with him I felt bad all the time...He loves me so much  that he never complained about my behaviour and listened silently all my crap words.

After a year we decided to go for an ivf . My hubby supported me in this decision because it was our last option and Doctor was same because my hubby thought that she knew my previous medical history. She established her new clinic very well. When I visited her for first scan she told me that she brought new machine for scan and that detected blood flow towards uterus is very minimal in my case. With her new machine this sentence was also new for me. I was shocked. She told me to do lots of test. She did HSG test (without anaesthesia) and that was unbearable for me .But good news was my both tubes were open.  I read about test meaning on internet. After investigating so much about ivf on net I found that there was some unnecessary test (TB test of uterus that cost 3k). When I asked her about it in my next visit she scolded me literally that Reading on net can cause stress and it reduced chances of getting pregnant. My hubby also thought the same. He supported her thinking and told me to stop reading in front of her. I was quite. She gave so much meds and told us that we had 60 to 70 % chances of conceiving via ivf as my optimal fertility rate and my egg quality was very good. But she was not talking about blood flow towards uterus. In second scan she told me everything is good.  I asked her” how is my uterine blood flow?” She said there is nothing which can cause any problem in pregnancy” and she added stop reading on net and told my hubby to disconnect net connection...Her behaviour was strange. But I was collecting information because all these things and terms were new for me. I should know everything. But my hubby had a faith that she was a brilliant dr. and I should not question her. As she completed her study from London and she had an experience of ivf in Australia.

I was person who scared of injections .I avoided injection so many times in my life .But this time I was happily ready for it. She gave minimal dose of meds because my body is sensitive .That was not minimal for me daily three injection in tummy and that was so painful. After a few days she told me that there was a concern of hyper stimulation in my case because my body was over reacting with minimal meds. She collected 16 eggs and out of that 12 fertilised...embryo quality was also very good (grade A). She was decided to transfer one embryo in same cycle. But we wanted to transfer two to increase the chances. She was not ready for that, but I forced her. After the transfer I was on complete bed rest as she recommended at least for one week. I was so positive and happy in those two weeks. But after two weeks I got negative result. I was shocked and angry also. After taking so much medicines, blood tests and scans how it is possible. On the same day 6 ET was done, out of that no one got positive result. Staff told me this. I thought there was something wrong from doctor’s end.  Dr. told me I had a beautiful 6 frozen embryos so try next time. She didn’t have any sad feeling for me. I cried for 4 days. My hubby was also upset. But I realised he felt bad because he spent more than 2lakh and got nothing.

After a month of gap DR planned for FET. On the ET day we were waiting for our turn. Nobody was informing us what happened. Why she was taking so much time to transfer. She kept us waiting for 5 hours. She said embryos were not enlarging properly...She was not telling the truth. She told us to come on next day. In this treatment I knew timing was very important. I didn’t understand why she kept those embryos for one night. . I knew that vitrification process takes close to 45 minutes to enlarge. She told me on next day that I lost my two embryos while thawing. When we inquired her staff about her embryologist we got to know that she was on leave. My doctor's s husband was a specialist in allergy who thawed my embryos. He was very rude person. He was in charge of medical and embryology department. I was aware of thawing process. Out of ten embryos one might not survive in the thawing process .but two 5 day grade A embryo we lost. We were so angry that time .why didn’t she appointed any other embryologist. When we asked her she said,”it’s a very easy process anybody can do this”. My husband scolded on her .He shouted on other staff also. It was so Irritating and frustrating moment for us. But we controlled our anger because our rest 4 embryos were in that clinic.

Next day I went alone for transfer because my husband was very angry and I didn’t want any more quarrels in clinic. This time she was angry she called me in her cabin and said, “I will pack your embryos, take it and get your transfer done in any other clinic”. I managed that situation anyhow and convinced her for transfer. I was so disappointed I literally cried in front of her. She promised me that if this cycle failed she will give me free ivf cycle because she had soft corner for me. I think that’s because my face looks innocent. This time she transferred two embryos.That ended up in a negative result after so much drama.

We lost faith from this treatment. I told to Doctor that for my last two embryo transfer I was not going to do any blood test this time. After 2 to 3 scan, very less medicine, no blood test and she was ready to transfer 2 embryos. On the day of ET when I asked about the embryo quality she said one was good but other was small. But while telling this she was not looking at me. She was lying. Because I was on OT table for 20 minutes before transfer and she was observing the embryos with her husband. I was able to see her from OT table. I thought again she did something wrong and hiding it from me. At the time of transfer I could see only one embryo on that screen clearly. She didn’t take money from us. That cycle also failed.

But this time I didn’t cry. When I told her about my negative result she sms me that she will give one free ivf cycle. I didn’t reply to that message.

I am looking for new job now. While searching something I saw your blog. I read all the articles. As I am an artist I am little sensitive. I cried. Most of your feeling and thoughts are just like mine. I also love cats. I have three cats at my hometown. After reading your blog I feel guilty about my husband. I tortured him. I insulted him so many times .Because of me he kept himself away from his parents for one year. We haven’t seen my sister in laws’ 2 year baby. We missed all family functions purposely. He scarifies a lot of things. Already he suffered a lot in life. He has three sisters he arranged their marriages and their baby’s first birthdays also. He has so much bank loan. He hasn’t done anything for himself. We leave in rented apartment .I don’t want to trouble him now. He is fond of cars. So instead of wasting money on this I allow him to buy brand new car. His happiness while driving a car is more important than my baby desire. I don’t want to compare happiness with baby from now. I will live each day happily.

Your blog changed my mind completely. When I share my feeling about life and baby with my husband .I can see happiness in his eyes. Because he wants to see me happy. One thing I like about you that your mother understands you. You can share your feelings with her. But in my case I can’t share anything with her...whenever she called me before asking about me she asks about my period and every time she tells me a new name of women who recently got pregnant.

Thanks,
San.

Why are doctors rude ?

I cringe when I see rude doctors . Sadly, this happens all the time . Typically, the doctor cuts off the patient while he is talking; or is sarcastic about his internet research; or does not respect the patient's need for privacy ; or makes the patient's wait endlessly for no good rhyme or reason , while he's chatting with a medical representative in the consulting room . These are all signs of disrespect , which means that the doctor doesn't really respect the patient , which is why he tends to abuse him . ( In fact, most doctors are blissfully unaware of how rude their own behaviour is, until they are at the receiving end, when they fall ill).

There are many reasons why doctors do this. One is the fact that they have a disproportionate amount of power within the doctor-patient relationship . The patient is dependent on the doctor, and has to rely on the doctor ‘s professional expertise and goodwill. There is often a lack of transparency , and the patient is pretty clueless about what's happening . Doctors sometimes take advantage of this information asymmetry and keep patients in the dark. They use this to establish to the patient that they are the boos; and use this power unfairly to manipulate the patient.

The second reason is because they can get away with it ! A lot of junior doctors see their seniors – their so-called role models – being rude to patients ( especially those who are poor or illiterate ) in the public hospitals, and they pickup these habits. Sometimes this rudeness maybe inadvertent , but it tends to propagate itself , so that it continues down the hierarchy.


Thirdly, being a doctor can make your head swell. Egos can get out of hand  when patients and their relatives hang on to your every word - and when you have a retinue of nurses, assistants and students when you make rounds on your patients in the hospital.

Finally, the most important reason is because patients put up with the doctor’s rudeness – they let them get away with it ! No doctor can survive without patients , and if patients put their foot down and say-  No , this is not acceptable behavior – we expect better from a doctor . We expect our doctor to treat us with the respect which we deserve , I think things will change a lot. Poor patients ( in government hospitals ) don’t have a choice , and have to put up with the doctor dishes out, because they have to depend upon the free medical care the government doles out to them. However, even extremely rich, powerful patients in private hospitals who are paying an arm and a leg for their medical treatment put up with this disrespectful intolerable behavior from doctors . If doctors find they can get away with it , they are that much more likely to do indulge in this rudeness – we all have a streak of petty dictatorship within ourselves.

Some doctors are deliberately rude. They use this as a strategy to intimidate their patients, so that they do not ask too many questions or waste the doctor’s precious time. ( However, this can backfire badly ! If something goes wrong, patients can be vengeful if they feel the doctor was rude, and will go out of their way because they want to teach him a lesson !)  However, I believe most doctors are reasonably nice people , but there is no doubt that when things go wrong , the doctor may forget his manners ! This is true when a doctor is excessively busy ; when is swamped with paperwork; when he is stressed-out because he has been on his feet for over 36 hours; when he has missed his daughter’s school play because he was stuck in the OR: when there is too much going on; and if his patient is not doing well . He may then lose his cool and snap, and take out his anger and frustration on the poor hapless patient who is sitting in front of him. This is such a shame ! If the healthcare system learns to respect doctors a little more ( and not make them waste their time arguing with clerks on the phone or filling out endless forms),doctors in turn will start respecting their patients and not be rude to them.

Not all doctors are equally good

Patients spend a lot of time and energy in finding the right doctor, Patients know that this is a critical decision , and that finding the right doctor can make a world of a difference to the final outcome of their treatment. Most patients assume that all doctors are technically qualified and equally competent – but this is not true ! Some doctors will have superior technical skills; some are great at marketing themselves; some are entrepreneurial and are proficient at raising money; some can build great teams; while others will have a stellar bedside manner.

It can be hard for the patient to figure out what makes one doctor better than another – after all, they have all graduated from medical school and are qualified and certified. Some naively believe that doctors who work in a five-star hospital must be better, but this is not true. Not all doctors are equal – and not will be surgically gifted .

How much time and  energy you need to spend in finding a doctor depends to a large extent upon what kind of medical problem you have; where you live; whether it’s an emergency; and how much you can afford to pay. . If you have a common garden-variety run-of-the-mill problem , pretty much any doctor will do – after all, most problems are self-limited and get better on their own, often inspite of the doctor ! There’s no need to hunt for a world authority if you have a simple pneumonia, for example.

However, if have a complex or rare problem , it does make sense to invest a lot of time and energy in finding out what your options are. It's very hard for patients to judge the technical competence of the doctor , which is why most patients have to depend on surrogate markers of medical ability. This is often the bedside manner of the doctor ; how empathetic he is ; whether he speaks nicely to you ; and is willing to spend time with you , explaining what you need to know. While the best doctors will have both an excellent bedside manner as well as superior technical skills, it's also true that there will be some great surgeons with superlative technical skills who are rude or brusque; while there will be some doctors who may have a great bedside manner , but are technically incompetent. How is the poor patient meant to figure out ?

This is extremely challenging , which is why patients shop around and get a second opinion from doctors; doctor  friends, family members who are doctors, and nurses . Thanks to the internet, it’s much easier to hunt for the right doctor ! Sitting at home, you can find out a lot about the doctor. What are his qualifications ? Where did he train ? What do other patients think about him ? While this is obviously not foolproof method , it does give you a lot of background information before you start digging deeper, so you can prepare a comprehensive list of prospects you need to contact. For example, you can look for who’s publishing research articles about your disease , by doing a search at PubMed, which is an index of all the medical journal articles in the world. This will give you a good idea of where in the world the researchers at the cutting edge of the field are.

It’s a little known secret that all doctors have special interests, and are especially good at treating patients with a particular problem. Try to find out a doctor who has a special interest in your particular problem  - he will treat you with much more love and care !

You also need to trust your intuition - the chemistry between you and your doctor should be right , and your philosophies should match. This is the only way of creating a win-win situation , where you are happy and have peace of mind that you got the best possible medical.

Surrogacy success story

We were first introduced to Dr. Malpani’s office by a friend who was born in India and still had family there.  She went to Mumbai for an IVF cycle with her husband after years of trying in the United States.  Two weeks after she came home from India she found out that it had worked and that she was pregnant.  She was blessed with a beautiful baby boy 9 months later.  When we decided to pursue IVF with a donor egg and Surrogate in 2010, we first tried in the United States and the cycle failed.  Our friend told us that we should consider going to India and she told us about the great experience she had with the Malpani Infertility Clinic.  We were a bit hesitant because Mumbai is so far away and we didn’t know how we would be received as a gay male couple. After speaking with Dr. Malpani and exploring his website we decided to go ahead with treatment there.

We are so glad we did!!!  From the start Dr. Malpani was responsive, informative and understanding of all of our concerns.  One of the difficulties we had with the IVF process in the United States was that it took so long to coordinate all of the various components of the procedure.  Our first attempt at IVF in the United States took almost 2 years to get to the point when the transfer happened (and subsequently failed).  With Dr. Malpani, every part of the procedure happened so quickly.  We were truly shocked because we were accustomed to the months of waiting with the previous IVF clinic we used.  We first contacted Dr. Malpani in January of 2012, we shipped the sperm to Mumbai in February, and by May of 2012 our surrogate was pregnant with a donor egg and my husband’s sperm. 

 We just returned from Mumbai with our beautiful and healthy baby girl, Gloria Maya, who was born on January 24th 2013.  We had no trouble getting the American citizenship for Gloria, and received the exit permit the same day from the Indian Foreign services office.  We highly recommend the Malpani Fertility Clinic without hesitation; in fact we will be pursuing IVF again in order to have a second baby. We would be glad to speak to any interested couples if they want to know about our experience.  Please contact us by e-mail at [email protected] and we can exchange phone numbers.

Why is there so much over testing in medicine ?

Doctors order far more tests today than they used to in the past. One reason is that medical technology has advanced, as a result of which doctors have a much wider armamentarium of tests to choose from – and they need to deploy these wisely. Secondly, doctors believe that they practice scientific medicine, They need data in order to be able to treat patients on an objective basis , and tests provide this quantification. The trouble with taking a history or doing a clinical examination is that these provide soft data - exactly the kind of information which alternative medicine practitioners such as homeopaths acquire. Modern doctors believe that the differentiating factor between scientific Western medicine and alternative medicine is the fact that there are so many tests which we have invented which can be used order to acquire quantitative data about the human body . Practitioners of alternative medicine can't do these tests – and this becomes the USP - the differentiating factor , between western medicine and other systems of medicine. Doctors are happy to exploit this difference in order to prove to patients how much better they are.

Also, ordering tests is profitable ! They cost a lot of money , which patients will pay without quibbling . Finally, patients expect doctors to order tests and many patients are not happy unless the doctor does tests and generates reports . Not only do these reports appear very scientific , they are full of medical gobbledygook and scientific jargon, which impresses the patient enormously. Any one who is smart enough to make sense of all the squiggles and shadows must be very smart , and can be trusted with helping me to get better. Interpreting the test results allows the doctor to look very wise - and because he can make sense of all the jargon which the patient can't , helps to establish the fact in the patient's eyes that he's dealing with an exper.

Medical technology companies  which invent these tests and market them have played a big role in pushing them, because they spend a lot of money on convincing doctors to order these tests – and to patients as well, so that patients can demand that their doctors do these tests for them. Unfortunately, with the easy availability of so many tests , doctors seem to have lost their common sense. For example , just because it's possible to measure levels of Vitamin B12 in the blood , is it really necessary to do so ? The test is very expensive – and it’s actually much cheaper to just treat the patient with oral multivitamins. Not only is this much easier and kinder, there are no downsides to doing so, as the extra vitamin just gets excreted in the urine !

So why do doctors make patients spend their hard-earned money on useless tests ? When the doctor orders the test, and the results shows that the patient has a low vitamin B12 level, he pats himself on the back for having made the right diagnosis ! The patient is also extremely happy that he has such an intelligent doctor , who's diagnosed the problem accurately !

The danger with over testing is not just the fact that it wastes a lot of money, it also needs to a lot of unnecessary overtreatment . It’s a dirty little secret that all these tests are riddled with errors – they give rise to a lot of false positives and red-herrings , which doctors are then forced to investigate, often leading them on a wild goose chase or ordering a further battery of tests ( which are even more expensive ); or referring the patient to a specialist , in order to “treat” the test abnormalities. The tragedy is that doctors then focus on treating the abnormal lab reports , rather than the patient - and this is one of the reasons why patients complain that doctors are no longer as compassionate as they used to be !

Why did my embryos not implant ?

When an IVF cycle fails , the first question patients ask is – Why didn’t my embryos implant ? The commonest answer they receive is – “ Implantation failure “. Many patients are satisfied with this, without realizing that this is just a wastepaper basket diagnosis, where the doctor is using jargon to cloak his ignorance. After all, what does this mean ? Does this mean that the embryos arrested in utero and  did not continue to grow ? Or that the blastocyst failed to hatch from the zona ? or that the endometrium did not produce the right chemical signals to allow the embryo to attach itself ? or that the uterine blood supply was not adequate for the embryo to be nourished ? or that the embryo had a genetic problem which prevented it from developing further ?

The term failed implantation is not really a diagnosis – it’s just descriptive ! It’s a bit like the word hypertension , which simply tells us that the patient has high blood pressure , but really doesn't tell us anything more. Similarly, failure to implant just means that the transferred embryos did not implant within the endometrium , but it does not tell us why they failed to do so – or what we can do differently the next time around to improve the chances of success . There are limits to our science , and when you're putting a microscopic ball of cells inside the uterus, it’s very hard to track it fate to determine what went wrong ! The simple truth is – we do not know why most IVF cycle fail ! There are only three tangibles we can monitor during IVF treatment: embryo quality ; the uterine lining; and the ease of the actual transfer procedure. Even if all these are perfect, most embryos will not become babies, because human reproduction is not a very efficient enterprise – and this is true, whether it’s in vitro or in vivo ! Just because your embryos did not implant in the first cycle does not reduce your chances in the next cycle, but few patients are mature enough to accept that doctors don’t have all the answers !

There is a lot of pressure on the doctor to provide an answer, which is why doctors are then forced to cook these up . They then run a battery of expensive tests , in order to find out why the “the uterus rejected the embryo” ! Amongst these sophisticated pseudoscientific tests, a very popular one is the one which tests for the activity of NK cells . This has very little value , because fertile women are as likely to have “high NK activity” as infertile women – but because they have enough sense not to go to a doctor to get their NK cell activity tested, they do not know this – and neither do their doctors !

Patients need to accept that even though our technology is limited in its ability to answer why embryos fail to implant, it’s still very good at allowing us to bypass problems , if they are willing to be patient !

IVF failure stories

Most IVF websites are full of IVF success stories . They highlight patients who did IVF treatment , and are now happily pregnant ! Such stories do serve a useful purpose – they give hope to infertile couples that it's possible for them to have a happy ending as well ! These stories carry a lot of weight, because they are first person accounts from some who's “ been there, done that “. If patients can get firsthand information from another  patient ( who knows how to reduce the pain of the injections; and how terrible the two week wait is ) , they are able to prepare themselves much better for their own treatment.

However , I wish there was a separate section for IVF failure stories also ! It's a fact of life that not all IVF cycles will be successful – and the majority of them do fail . It’s very hard to cope with this failure ! These stories would help patients to do so, so they can pick up the pieces of their shattered dreams, and continue their quest to have a baby. These stories help them to prepare for the worst, so they become emotionally resilient ; and can start considering Plan B options such as adoption or childfree living, instead of being paralysed into inactivity when the IVF cycle fails.

Unfortunately, it's very hard to get patients who have failed IVF treatment to share their experiences . They think of themselves as being failures - not just as their IVF cycle as having failed . They bottle up their emotions and keep their hurt to themselves. I think this is a shame , because a lot of their knowledge and hard-earned wisdom and experience would be very helpful to other people who go through the pain of experiencing a failed IVF cycle. Equally importantly, these stories would give infertile couples a much more balanced , realistic perspective of what IVF treatment is like . The truth is that not all IVF cycles have happy endings – and that even if the cycle fails , at least you can have peace of mind that you received good quality care - and that life continues on , even if the cycle fails .

IVF failure stories ensure that patients have realistic expectations ; and remind them that IVF cycles are more likely to fail than to succeed. The fact that other people have dealt with IVF failure successfully will help them cope better in case their cycle fails. Patients do learn to bounce back after a failed IVF – it’s not the end of the world, or the end of the journey !

These stories would also make my life as an IVF doctor much easier , because I spend a lot of my time counseling patients after the IVF cycle has failed and these real life first hand accounts would provide a useful resource for patients. Reading these stories would boost patient’s morale in case their cycle fails, by reminding them that other people have dealt with the failure successfully !

I think patients would also have a lot more respect for IVF clinics which published their IVF failure stories. One criticism against IVF clinics is that they paint a very rosy picture – they overpromise , because they want to attract patients for treatment. This means that they aren't always forthcoming with the truths, and sometimes hide the downsides of IVF treatment. An IVF clinic which had a section of IVF failure stories would mean that they had the patient’s best interests at heart, and were willing to portray the complete picture - the unvarnished truth about IVF - warts and all ! Any intelligent patient would respect such a clinic. One reason IVF clinics are worried about putting up failure stories is that they feel that patients may get put off as a result of these stories, because they may discourage patients. I think we underestimate the intelligence of our patients ! They are smart enough to learn the truth – and the more open and honest we are with them , the easier it will be for clinics to cope with their disappointments in case the cycle does fail. A common complain patients have is that when they come for the first consultation, the IVF doctor is very sweet – but when the cycle fails, their IVF doctor abandons them.

I think all of us learn a lot more from failure, rather than from success - we learn more from adversity than from our good times. Both IVF patients and clinics can learn a lot from IVF failure stories.

Promoting Health Literacy in India

Helen Osborne, who is an expert on Health Literacy, recently interviewed me about what HELP is doing to promote health literacy in India !

Infertility is ...

1)       the love we carry for our unborn child
2)       the happiness we feel when we see small children
3)       the respect we develop towards all forms of life
4)       the love we feel towards our understanding, supportive and selfless partner
5)       the surprise - when we hear how our friends get pregnant by accident!
6)       the wonder - when we see the growing belly of a pregnant woman!
7)       the affection we develop towards couples who lead a happychild-free life
8)       the wisdom we gain in life even though we are still too young to learn all those lessons
9)       the gratefulness we feel towards people who do not make awkward suggestion, awkward comments and ask awkward questions!
10)    the tear we shed when we read about an unknown, unwanted baby abandoned in a dustbin
11)    the refinement we attain in our thoughts, words and deeds!
12)    a blessing which keeps us appreciating the beauty of life and all life forms

In short, infertility is everything (every positive emotion) in an infertile woman’s life. Infertile women don’t have an evil eye but an empathetic view of everything. Infertile women don’t have a jealous heart but carry motherly warmth in their deeds. Infertile women are not possessed with spirits but they try hard to live life with a positive spirit.

If you are struggling to have a baby and when people hurt you with their words and deeds just remember one thing – a happy person doesn’t hurt anyone. Only people who lead a miserable life filled with guilt, suspicion, superstition, unhappiness, dissatisfaction, pride and fear desire to hurt others. If you meet them by chance; have pity on them, be diplomatic, smile and move on! That is what I do!

And friends, if you know someone who is striving hard to have their baby; please avoid this question for God’s sake – ‘Is there any good news?’ If you think having a baby is the only good news in your life – we are sorry for you!

This is an excerpt from our forthcoming, book, The Expert Patient's Guide to IVF. This being authored by our expert patient, Manju and me.


 You can email Manju at [email protected]


Her blog is at www.myselfishgenes.blogspot.com

IVF and Indian society

India is a male-dominated, child (male child!)-obsessed society. When a couple faces infertility problem, it is the women are the ones who are blamed for their inability to get pregnant , and not the men. There are men who are reluctant to undergo infertility testing. There are mother-in-laws who adamantly deny the fact that their son could be infertile. The position of infertile women in Indian society is highly pitiable. They are generally viewed as being cursed as they are missing out on the ultimate blessing – motherhood ! Indian society is used to seeing women as baby-making machines. People believe that womanhood is complete only when a woman gives birth to a baby. As a result, when a woman fails in her reproductive function, she is viewed as incomplete and flawed! All her other positive assets are considered useless. In certain parts of India , infertile women are thought to be possessed by evil spirits! Which is why there are still people who do not invite infertile women for auspicious functions. Because of the social stigma associated with infertility, even educated women are ashamed of being infertile! They think that their body is defective and they believe that it is because of their sins ( either in this lifetime or the past) that God is punishing them, and that they must have been cursed to suffer the pangs of childlessness.

It is because of all this emotional baggage, both personal and social , that they are very reluctant to talk to anyone about their problem , and they are forced to suffer in silence. This in turn creates mental strife and depression. No one dares to ask an Indian man why he is not able to have children , but childless Indian women face ridicule from all walks of society. In such an environment , what can a husband do to protect his wife’s emotional well-being?

In-laws still pose a major threat to an infertile woman’s emotional safety. Although it is not always true, many infertile women are made to suffer at the hands of their in-laws. When a woman is not educated or financially independent , and when she has to live with her in-laws, the suffering becomes intense and intolerable. She has to face verbal attacks - and in some instances , even physical violence. But an infertile Indian man is totally protected from these kinds of emotional assaults. In such a circumstance, if your wife has a fertility problem , isn’t it your duty to safe-guard her from your spiteful parents and siblings? The best way to protect your wife is to tell your family that it is you who have fertility problems, and not your wife! Is it so difficult to tell such a small white lie?  If they believe that it is their son who is having a problem , then they will treat their daughter-in-better well (at least they will not hurt her!). This creates a peaceful environment at home , both for your wife and also for you!

In our case, my DH ( Darling Husband)  is very kind , and is considerate enough to lie to his parents that the problem is with him. Life became very difficult for me when my mother-in-law started questioning me during each conversation we had, as to whether we were taking treatment; whether I was taking medicines properly; and when my last menstrual cycle was. I started to dread the telephone conversation with her , and became very restless when the week-ends tolled around. So my DH told them that he is the one who is having problems with his fertility. As a result of this , the questions which made me uncomfortable vanished! I do feel guilty within myself (isn’t it hard for any parent to know that their offspring has fertility problem?) and I feel very grateful for my DH’s understanding and kindness. Even though it appears very selfish , it has made our family life peaceful. I no longer get hurt after a conversation with my mother-in-law. I no longer make my DH’s life miserable by saying that your mom asked me this and that. When there is an intrusion from outsiders (yes, even your parents are outsiders when your family life is concerned!) , the infertility problem gets magnified several fold.

The stigma associated with infertility tends to continue even after we get pregnant and give birth to a child.  I received an e-mail from a couple who is awaiting the birth of their first child , conceived after IVF. They are very happy , but at the same time are very anxious about whether they should tell their parents about the fact that their grand child is a test tube baby ! They wrote ‘In India,  awareness about IVF is very less. People think that IVF is a technique which is used for infertile couples who are unable to produce their own eggs or sperms. The general belief among the public is, in IVF technique, donor sperms or eggs are used (Thanks to the movie, Vicky Donor!). In this situation is it even wise to tell them that we conceived our child via IVF? Will they even bother to try to understand the science behind the creation of our bundle of joy ?”

In India, IVF is still a taboo subject. Many people strongly hold on to their own fallacies and it is very hard to explain them what the scientific facts behind IVF are ! In this situation, what will happen if the elders in the family think that the child doesn’t carry their family genes? How will society treat the child if they see the child as being born from an outsider’s gametes? Won’t this be a danger to the child’s emotional safety? The man wanted to know whether it is OK to tell his parents about the complex IVF procedure, because he wanted to share the truth with them, but his wife is very afraid and reluctant to do so.

I could understand his wife's dilemma. She is afraid whether her in-laws will accept her baby if they have the notion that the IVF technique is used for couples who need donor eggs or sperms. It is very important for her husband to respect her feelings. Even though they are his parents , it is not necessary that he tells them everything which happens in his life. Elders, because of the society in which they grew up, have a very conservative mind set. Some can be very close-minded, and it hard to change them and make them understand facts. Why should someone worry them with unwanted details? What are they going to do by understanding the facts? It might lead to unnecessary chaos and worries! Let the elders be happy on seeing their grandchild - it is not necessary that they know the mode of creation of their grandchild!

When the child grows up, the parents can tell the child the science behind his birth at an appropriate age. It’s best that the baby learns about how he was born via his parents , rather than through someone else who is ignorant about the process , and can distort the details!

If you are a person who is afraid and depressed of your infertility (and are reluctant to explore different treatment options) because of the society in which you live in, my sincere advice is– you have only one life, live for yourself!


This is an excerpt from our forthcoming, book, The Expert Patient's Guide to IVF. This being authored by our expert patient, Manju and me.

 You can email Manju at [email protected]

Her blog is at www.myselfishgenes.blogspot.com

How patients can help doctors to be more ethical !

There's been a lot of hue and cry about how unethical doctors are . The general perception seems to be that the good old family doctor of yore is dead , and that doctors have become greed businessmen, who will do a lot of unnecessary tests and surgery in order to earn more money.

There have always been bad doctors; and there will always be good doctors. I don't think breast beating abut declining ethical standards helps. Good doctors will remain good; and bad doctors will never improve , just because you give them lectures ! In fact, I don't think ethics can be taught , which is why all our efforts have been directed towards educating patients.

If you end up in the hands of a bad doctor, then even God cannot help you ! However, if you have a good doctor taking care of  you, you do not need to worry . The key question is - how can you find a good
doctor ? and how can you ensure your doctor is giving you the right advise ?

Your body is too important to leave upto anyone else. You cannot afford to be lazy and blindly repose all your trust in your doctor - he needs to earn it.  This means you need to do your homework, so you can verify that your doctor is giving you sensible advise ! The good news is that it's become remarkably easy to do this, thanks to the internet !

Information Therapy – the right information at the right time for the right person – can be powerful medicine! Ideally, with every prescription, your doctor should prescribe information; and in a perfect world, every clinic, hospital, pharmacy and diagnostic centre would have a patient education resource centre, where people can find information on their health problems.

Our book, Using Information Therapy to Put Patients First is now online at
http://issuu.com/malpani/docs/informationtherapy?mode=window

Information Therapy can help to heal a sick healthcare system – and everyone has an active role to play in making this a reality! Patients are the largest untapped healthcare resource - please don't underestimate your ability . You don't have to get a MD degree to become an expert patient - a dose of common sense is enough !

Why are doctors afraid to say we do not know ?

All the doctors will accept the fact that medicine is an imperfect science  and that there are lots of gray zone areas in medicine . Most patients will not come to the doctor with the symptoms and signs the textbooks say they should ! There are lots of variations , and sometimes it is hard to be sure about what the diagnosis is - or what the right treatment is . If doctors are unsure, the honest course of action would be to share this uncertainty with patients - to let them know that there are areas of ignorance in medicine, but that based on our practical experience of many years and our collective wisdom, we can still do our best to help patients get better .

Unfortunately , most doctors are not willing to tell patients the truth and there are multiple reasons for this. One is the fact that patients expect doctors to have all the answers. Doctors are scared that if they tell the patient the truth – that they do not know the diagnosis , the patient may feel that this particular doctor is incompetent and ignorant – and may end up seeking out another doctor , as a result of which they may lose the patient .

They therefore pretend that they know everything, and cloak their ignorance with all kinds of pseudoscientific gibberish . They make the patients undergo lots of expensive esoteric tests , which do not provide any useful information , but give the patient the impression that the doctor knows what he's doing ! Patients are awed by complex medical terms , none of which any sense to them, If the doctor can interpret these, then doesn’t this clearly prove that the doctor is an expert ? The sad truth is that none of the test results make any sense to the doctor either , but of course he doesn’t tell the patient this. He therefore indulges in this kind of skulduggery to create an aura of omniscience, but not only is this harmful for the patient , it's actually harmful for the doctor and for medical science as well, because it prevents us from exploring our areas of ignorance .

By being honest with our patients, we can actually partner with our patients as allies in a quest to further our medical knowledge . By telling them that we don’t know, they can help us to find the answers !

The true expert - the world authority in a particular field , is actually quite open about sharing his ignorance . He is willing to say – Yes, I don't know - and no one else knows the answer, either, but we can work together to find it ! Just because the doctor does not have all the answers doesn't mean that we cannot treat the patient !

If doctors learned to be more transparent with their patients, they would learn that patients have the maturity to accept that medical science is full of holes. This openness will also help patients to understand what the doctor can do - and equally what the doctor can't. This is good for patients and doctors as well – and sharing this actually helps to improve the doctor-patient relationship – after all, patients know that doctors are not God ! The problem is that this kind of sharing requires the doctor to invest a lot of time and energy to sit down and talk to the patient . By contrast, it’s much easier to just order a panel of tests and send the patient off  on a wild goose chase !

Why is it so hard for doctors to say sorry

It’s a fact of life that all doctors will make mistakes and errors, some of which will cause harm to the patient. Oftentimes this harm is self-limited , and the doctor can fix the problem , but nevertheless the fact remains that the doctor goofed up.

Doctors are good people who honestly feel sorry when something bad happens to their patients - especially when he was responsible for the harm. Every doctor thinks of himself as a caring professional , and when he causes injury to his patient, it's a major blow to his self-esteem. Most would be quite happy to say apologize ; and come clean by explaining to the patient , what went wrong – and how they will fix the problem . I am sure this is what most patients would want as well.. Unfortunately most doctors are extremely reluctant to do so , and because they are scared , they pretend, and try to cover up their mistakes by lying.  This often ends up making a bad situation worse , because patients are smart , and can smell something is wrong . When they get multiple versions of the same story, they can sense something is amiss – and if harm has been caused and no one is willing to level with them , they are likely to get angry that no one is telling them the truth. This addition of insult to injury is often the last straw – and patients start getting vengeful and want to punish the doctor.

The reason doctors are scared to say sorry is because of our present adversarial legal system . If there were some way by which patients could gracefully accept an apology from the doctor and forgive them , because they know that doctors are humans and mistakes can happen , life would be much easier both for doctors and patients – and for future patients as well, because doctors would work on fixing the system and making sure the errors did not recur. In a atmosphere of openness and transparency, everyone would function far more efficiently , humanely and compassionately .

However , because doctors are so scared of being sued for negligence , and because lawyers have put the fear of lawsuits into doctors , they are not willing to be open . This is why they try to do their best to cover up. This causes a lot of harm for patients , who then don't trust doctors anymore ; and for doctors themselves , because they then have to live with this guilt all their lives.

Do doctors charge too much ?

Most patients today feel that medicine is no longer a profession . The believe that it's become a business and that doctors are greedy and commercial – and that they charge too much. Sometimes it's easy to understand why they think so. You see a doctor for a brief five minute consultation – and he charges big bucks, just to check your pulse, blood pressure , listens to your heart and scribble a prescription ! It seems like easy money for such little effort, doesn't it ? And since there are so many patients waiting to see him, you do a rough mental calculation and conclude that he must be minting money !  This is a flawed perception , which causes doctors a lot of anguish , because it’s so far removed from reality !

The other problem is that patients feel that medicine is a noble profession ; and that the doctor should be selfless , and should be happy to treat patients without charging them an arm and a leg ! After  all , isn't that what doctors in the past used to do ? Why have modern doctors become so money minded ? Why can't they be like the good old doctors of yore who stayed up all night by the patient’s bedside, and travelled for hours on horseback to make home visits, simply for the joy of seeing the patient get better ! Seeing the smile on the patient’s face – and taking back home a kilo of vegetables - was enough reward for those doctors !

This burns doctors up, because they feel this is extremely unfair. They have spent years and years slogging and swotting in order to be able to practice medicine. Patients don’t seem to acknowledge this, or realize how much they have sacrificed in order to become a doctor. Doctors are aware that there is always a chance that the patient may take a turn for the worse – and if something does go wrong , the patient is quite likely to sue the doctor for medical negligence . Just like doctors have changed, so have patients ! Patients are no longer as grateful as they  used to be in the past – and neither are they as undemanding and accepting of the doctor’s authority. They don’t seem to repose the same faith in the doctor as a trusted professional which their grandparents did – and will often grill the doctor and cross question him. Doctors feel that if patients no longer treat them as respected professionals, but rather as commodities whose expert opinion they have paid for, then why should they continue to work for a pittance ?

Doctors believe that  neither the financial or the emotional rewards they earn today are commensurate with the amount of time and effort which they have invested. They compare themselves with other professionals – for example, lawyers , who charges hundreds of thousands of rupees for standing up in court and speaking for two minutes ! If corruption is so rampant in society; and if builders and politicians can earn more money in a single month than they can even by working for  every single day of their life , then what gives patients the right to judge them by a different yardstick ?

They resent the fact that patients so easily forget the thousands of sacrifices which they have had to make in order to become a doctor - burning the midnight oil to master the niceties of medical science; evenings spent away from the spouse; and a countless number of missed family functions and children’s plays and football games , just in order to take care of patients .

There is a lot of anger and resentment building up within the medical profession , and it upsets them when patients complain that they charge too much. After all , patients themselves work in their job in order to earn money, so what’s wrong if the doctor honestly earns money for doing his job ? If a doctor didn't earn enough money, then how would he be able to continue running his clinic to take care of his patients ?

Doctors do need to earn enough money to be able to provide good quality medical care . In fact , a well off doctor who has a comfortable income and does well for himself because he is successful is likely to be a far better doctor , because he's not likely to advise unnecessary surgery or do useless tests or treatments, because he doesn't need to ! On  the other hand , a financially strapped doctor is much more like to over- test and over-treat, in order to make ends meet. If your doctor is successful and is doing well, please don't grudge him his success – he has worked hard for it, and deserves what he
earns !

Why good IVF doctors do only IVF ( and nothing else)

IVF is a highly specialized branch of OB/GYN . IVF specialists all over the world stick to their core competence of providing IVF treatment , because it takes them many years of training and expertise in order to specialize in this particular field . They need to continue honing their skills , and the best way to do this is to do just one thing , and do it extremely well. While this is true in the Western world, it’s amazing that in India most clinics doing IVF are run by general gynecologists , who will continue to do general OB and GYN, along with doing IVF. For most of these doctors, IVF seems to be a part time service which they dabble in !

If you want to call yourself an IVF specialist , then I think you should only do IVF , and nothing else. This allows you to become extremely good – and gives your patients a lot more confidence in your skills and expertise.  Good IVF doctors are so busy doing only IVF, that they really do not have the time, energy or inclination to do anything else . And IVF is so rewarding, that there's really no reason to do anything else if you do it well !

The reason why a lot of gynecologists doing IVF continue to do everything else as well is because they are not very confident about their IVF skills , and are worried about their low success rates. They feel that if they do only IVF, they will not have enough patients !

Now every IVF specialist has trained as an obstetrician and gynecologist ; and has the skills to do hysterectomies and caesarean sections, but that doesn't mean they should continue doing these procedures.

If I were a patient. the fact that the doctor does only IVF would be very high on my list of criteria for whom to select my doctor. ( Would you go to a cardiac surgeon who also does appendectomies ?) The fact that he does only IVF means that he is better at it as compared to a doctor who does lots of other procedures as well, because he is devoting all his time and energy towards enhancing his IVF skills .

Similarly, I would select an IVF doctor who practices only in one place , and does not run around from city to city or country to country , trying to get more patients just in order to increase his income . Anyone who travels so much dilutes the amount of time and energy he can devote to his patients within one center. I want a doctor who focuses all his energy on getting me pregnant ! If he travels, he is forced to delegate the treatment to his assistants, who obviously aren't going to be as good as the main doctor ! ( After all, an assistant would not remain an assistant for very long if they were as good as the main doctor – they would start their own clinic !)

Your IVF cycle failed. What next ?

 

Patients are understandably disappointed and disheartened when an IVF cycle fails. Everyone starts an IVF cycle with the hope that it's going to be their first and their last – that they’ll get lucky and that it'll work for them. When it doesn't , they are now back to square one and have to decide what to do next. So they turn to their doctor and ask - Doctor , what do we do next ? What went wrong ? What can we change the next time ?

This is a difficult question for the doctor to answer because in all honesty there are major limitations in our ability to predict the outcome of any IVF cycle. While we can generalize and provide the clinic’s success figures , remember that these apply to groups of patients – they do not apply to individuals . There is no IVF doctor in the world who can  predict whether a particular cycle will actually end in a pregnancy or not, no matter how well it goes. All IVF doctors will acknowledge that we've been wrong multiple times. There are many cycles which are terrible with poor quality embryos or difficult transfers because of bleeding , and much to our pleasant surprise , these patients get pregnant . Conversely , there are patients who have beautiful text book cycles, with excellent embryos and easy transfers, who don't get pregnant, no matter what we do.

This is frustrating for the patient - and even more so for the doctor . It’s no fun for a doctor to tell the patient,”  I'm sorry I don't know why the cycle didn't work “. This is actually the only truthful answer which the doctor can provide , but this is not what patients want to hear . They treat the doctor as an expert , and want some kind of certainty from the doctor . They naively believe that if we can find out why the cycle failed, what will be able to rectify this the next time around .

The truth of the matter is that just as we don’t know why certain embryos fail to implant in an unsuccessful cycle, we don't know why particular embryos implant in a successful cycle ! We are equally clueless in both cases ! Unfortunately no patient ever asks us - Why did my IVF cycle succeed ! It’s only when we are asked *Why did the cycle fail”, that doctors have to be creative and make up answers. Many will run a battery of tests which are expensive and exotic, and which rarely provide much useful information . This is hardly surprising – after all, how is it possible to track the fate of a microscopic ball of cells , when we put them back into the uterus ?  We all know that human reproduction is notoriously inefficient , and this is true , whether it's happening in the bedroom , or in the clinic . Of course, when it takes time in the bedroom , no one complains ! When it takes time in the clinic , patients are unhappy and demand answers, which doctors are forced to then cook up.  The tragedy is that these unnecessary tests create lots of red herrings – and patients end up wasting a lot of time doing useless tests and pursuing unproven treatments ( such as anti TB for a positive PCR; or a course of immune therapy for treating abnormal NK cells).

Ideally,  the doctor and the patient should medically analyze how the cycle progressed – and if everything went perfectly like clockwork, the best option is to repeat the treatment without making any changes at all. On the other hand, if there was an identifiable problem ( for example, a technically difficult transfer ; or a thin uterine lining ; or a poor ovarian response), then this is something we can try to treat until you do have a perfect cycle . If you do have a perfect cycle and still don’t get pregnant , then please do not panic. There’s a lot of pressure to do something different the next time, and you might find yourself scouring the internet, looking for what you can do differently the next time around ! However, this is not a medically or scientifically appropriate decision , because often just repeating exactly the same thing again may help you achieve success the next time around. If your doctor tells to change something, you need to look for logical reasons why he is asking you to do so.

This is such a gray area , that sometimes doctors will allow patients to make a change, even when we honestly don't know whether this change will help. When we don’t have enough facts , it's perfectly okay to go by instinct , and this is where the patient’s inputs are so important !

This is why Information Therapy is so important ! Patients need to have realistic expectations before starting the cycle, so that even if the cycle fails, they have the maturity to be able to say - We understand that IVF may not work and we were prepared for this before we started .

If you do want to change something, you have 5 options:
Change the superovulation protocol
Change the eggs ( donor eggs)
Change the sperm ( donor sperm)
Change the uterus )( surrogacy)
Change the embryo  ( donor embryo)
Or
Change the doctor.

The new doctor may often play a game of one-upmanship and make you lots of tests, to prove that he is more thorough and more advanced than the old doctor, who did not bother to do these tests !

The important thing is to have a Plan B, so that even if the cycle fails, you do not go to pieces ! You need to be prepared for failure. This gives you a sense of control over what is happening , so that it's easier for you to deal with the uncertainty if the IVF emotional roller coaster ride .

The three kinds of doctors

There are three kinds of doctors.

The doctors who know that they know are the doctor’s doctors – the world authorities , who do the research and to whom other doctors will refer their complex patients when they are perplexed. However, these are few and far between – often because there is a lot in medicine which we do not really know or understand !

The wise doctors are the mature physicians who know that they do not know. They understand the limits of modern medicine and do not hesitate to share these with their patients. They do not pretend to know more than what is known – and are quite comfortable acknowledging their ignorance with their patients , so that patients can make well-informed decisions after understanding the extent to which medicine can help them , and to which it can't .

The really dangerous doctors are the so-called experts , who don't know that they don't know. Typically, they  think that they know the truth , but actually don't - or , even worse, they think that they know , but in reality what they know is actually wrong. These are the ones who will overtest and overtreat , but in trying to help patients, they end up doing a lot of home. Unfortunately , because these doctors are often influential, they end up causing a lot of inadvertent harm , because they don't know any better - and because other patients and other doctors don't know any better either. Some of the myths and fallacies which they espouse continue getting propagated because these are often the so called leaders in medicine - the people who publish papers and present at conferences , repeatedly propounding their incorrect point of view. Most other doctors do not have a very good way of being able to differentiate between what's true and what’s not – and are quite happy to accept the viewpoints of these experts as being gospel truth. Many of these flawed opinions ( and there’s an embarrassingly large list !) become accepted dogma in mainstream medicine , until a true expert comes up with a scientific study which challenges the previous assumptions and proves that they were wrong.

However, it requires a lot of maturity to be able to accept the fact that sometimes we don't know stuff ! In an ideal world, translational research would allow us to convert benchside hypotheses into tried and tested clinical advances, but it’s extremely hard to do this in real life . I think clinicians need to be very clear about what they're doing , and to explain this and share this openly with their patient . If they are trying out stuff which has not been shown to work ( but which they believe is useful), they should frankly tell their patients that they are now entering the realm of the unknown – and provide reasons as to why they think the course of action which they are proposing is likely to be helpful.

We have multiple areas of ignorance in IVF – and rather than exploit our patient’s vulnerabilities by pushing untested and unproven ( and expensive !) interventions, a little bit more openness, honesty and transparency with our patients would help patients as well as doctors. If patients knew that they were being subjected to unproven or uncertain treatments, many are mature enough to accept this uncertainty; and expert patients could use their own experiences in order to further the field of medical knowledge , provided doctors are willing to be open with them !

The importance of the human touch in clinical medicine

One of the most ingredients in healthcare is the personal relationship between the doctor and the patient. Unfortunately , we sometimes tend to undervalue the importance of this; and it's only when we are actually sick ourselves and need a doctor do we understand the value of having an actual human being who can hold our hand and provide comfort .

Unfortunately , the bureaucrats who assign the dollars which make the health system run, underestimate its healing value, because they are sitting ensconced in their ivory towers . Because this is an intangible, which cannot be captured in numbers or tracked, they fail to understand its significance, and try to replace it with things which they can measure ! Sadly, not everything which measures can be counted,  and not everything which counts can be measured .

Let’s look at an IVF patient who goes to a super-busy clinic with a large team of doctors, as compared to one who selects a small clinic with only 1 doctor. While it's true that there are advantages in a group practice , one problem that recurs is that you often don't get a chance to see your personal physician every time . In fact, you may not even see the same doctor each time, because it’s the doctor who happens to be on duty that day who will do your egg collection or your embryo transfer. While this helps the clinic  to improve its efficiency and throughput, it also makes your care more impersonal; and you need to try to create an emotional  connection with each new doctor you see.
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It’s only when you have had the good fortune to be treated by  caring personal physician in solo practice that you understand how important it is to have a physician as your advocate . You personal doctor stands up for you ; and goes out of his way to make sure that you get whatever you need. However, when you do not see your own physician, the attending doctor i^kely to be much more detached, because he doesn't share the same emotional relationship with you . He is not likely to care as much; or do as much; or go out of his way to take the extra trouble your physician would. I think this is something we all need to acknowledge , instead of pretending that it doesn't matter.

 It's not easy calculating the value and quality of the doctor-patient relationship , but just because it's not easy doesn't mean that it should be done - and until we actually start incorporating this measurement into all clinical encounters , we will never be able to fix our healthcare system.