An Indian woman's IVF experience and how to make the ART field in India better?

This is a guest post from NP who has gone through IVF treatment in India. With her wonderful e-mails and compassion she has become my good friend too! In this post she has shared with us her IVF journey and I am sure it will help many people going through infertility struggle to become more positive and  better person as a whole. This post is a result of hard-earned wisdom. People who undergo infertility treatments do have a lot to learn from this. Thank you very much NP for sharing it with us. We wish you lots of good luck and may all your dreams come true!

The term ‘infertile’ was coined by doctors and thrown on us. In the beginning I and my husband were in denial mode.  He couldn't accept that there was a problem with him and gynaecologists said that I am fine. It took me 3 years to make him understand that indeed there is a problem with him after educating myself about our problems from internet. Yes, the doctors were of no use! They gave me least information and wasted my precious time. After lots of conversations between us, my DH agreed for trying IUI; but it failed and we were told to go for IVF treatment because of poor sperm count and morphology. IVF is an invasive procedure and my DH refused to take that route. He was afraid that there would be a negative effect on the child born via IVF. Because of his conservative view he didn't like this kind of baby making. Again so many months went wasted. I was learning about the IVF treatment; reading; trying to be happy in front of him yet persuading him to visit doctors. Finally, he agreed and when we started our IVF journey, I was 33 years old. I always knew time is precious in infertility treatment and it is passing by. When my first IVF cycle started, the doctor gave us shocking news just a day before the egg retrieval, ‘NP, you just have 4 eggs and they are all luteinized, we will abandon this cycle but we will do the necessary tests for you.’ I am wondering within myself, luteinized? What is that? During the IVF process every time a new terminology cropped out and like kids we have to learn many new things! The test results came back and I was found to have low AMH-1.8 ng/ml. The doctor on seeing my AMH results advised me to take up the donor egg route. What's that? I asked her. What rubbish are you talking doctor? She said excitedly ‘Oh! Don’t worry, I can get u beautiful models, intellectuals, bollywood heroines, young girls with healthy eggs, beauty with brains with similar DNA profile as yours’. In my heart, I cried; in my mind I asked myself, ‘what is all this nonsense’? Am I looking forward to have a child or am I selecting a vegetable from market? Isn’t love the necessary ingredient in baby making? This lead to the discovery that; here in Delhi, donor eggs, donor sperms, surrogacy is a huge market. People sell them for monetary gains. As I used to wait for doctors at the clinics, I could figure out touts, surrogate women, egg donors, customers etc. I never ever thought that infertility could be marketed in such a big way. It shattered my soul beyond my imagination. Is it so difficult to get the basic requirement of a living being? You said it right Manju, people do not even understand the words when they give us suggestion of donor egg or adoption. My heart would sink seeing children abandoned or my friends aborting their babies because they don't want a second child. My God! It was my dream to have 3 kids of my own ever since I was a small child. Being the eldest in the family my kid brothers was born in 1 year and 3 years gap and I had been like a mother to them ever since I was five myself! I took care of my relatives and neighbours children all when I was a kid myself.

Well, Then I went to another doctor. ‘You search and I will come along with you’ were the words of my DH. I searched and searched. We went to Mumbai to visit our relatives and luckily I found myself at Dr. X’s clinic. ‘She is the best’, I was told. I thought to have her opinion too. She scanned my ovaries and said ‘your left ovary is too small; you do have poor ovarian reserve’. You can try ICSI but the best option would be donor eggs’. I asked her ‘What are the chances of success and the cost?’ I was told that my chances are 10% and the cost of ICSI is 2.5 lakhs. It's an absurd amount with such low chance of success and the necessity to stay in an alien city also added to the stress. So I searched in internet again for clinics in Delhi.  This time we did another ICSI cycle using ‘long protocol’. They retrieved 6 eggs, 5 fertilized and all are 4 cell grade B two days after ER.  I was ok with the doctor but I did not like the junior doctors and the environment. The clinic was swarmed by Afghanis and there was complete chaos. I regretted my decision but I was in the middle of the cycle. I did not conceive : (. I was alone when the reports came. I went to see the doctor. I waited from 11 AM untill 6 PM holding my tears and fighting with my emotions. I was getting angry at her because of the lack of time management. When she came, she simply told me to go for donor eggs. I asked her ‘why did it fail, you said embryo quality was fine. She replied that it is because your uterus did not accept the embryo or because of your DH’s sperm which has poor morphology. I never went back to her. I read the information on Dr. Malpani's website and all his blog posts. They gave me a clear understanding of ART field. Coincidentally, whatever happens with me during my IVF cycle, he would write a blog post about it in a few days. So when she said poor morphology was the reason, I knew she thinks I am a fool! I know that sperm’s function is just to fertilize the egg and even sperms with poor morphology can create beautiful babies.

So, I started my IVF again in Bourn Hall Clinic, Gurgaon. The clinic in Gurgaon is a UK based one run by the IVF pioneer who created the first test tube baby.  Though the doctors are Indians they are trained by UK doctors.  I was impressed by their professional attitude and by the stringent rules with which they maintain their laboratories. This time I had antagonist protocol (this July) but the cycle was abandoned due to fewer (only 4) follicles and they were less than 10mm despite a dose of 450 IU Gonal F for 7 days. On seeing my ovaries response to gonadotrophins the doctor is not hopeful. But I am. If I see my entire journey in a broader prospect, I have not lost anything. Money yes, time yes, mental piece yes, relationships yes but nt my fighting spirit. I am a fighter and I can fight against the odds. I will accept it if I cannot have kids of my own in the end, but I am not lost as an individual. I have many aspirations, dreams to fulfil. I lost my smile, my friendly nature, my creative side for a few years now but I am bouncing back with double the energy. I keep meeting wonderful people from all over the world, different age, different struggles but they are all living happily, helping others. This inspired me to LIVE TODAY.

 Now, I am back to my walking schedule which I love, yoga is my passion and I am keen to take up dancing classes, learn driving, interacting with new people from all quarters of life and help many others who are struggling with infertility. I am becoming a better person!

NP’s experience in the field of IVF is an eye-opener for everyone who is going through this process. I am very happy that NP came forward to share with us her journey. I appreciate her good-will and courage. When I read NP’s journey again and again; I note several important points and questions which every couple undergoing infertility treatment should be aware of. I will make a short summary of it:

1)  Indian men (might be males all over the world!) are very reluctant to accept the fact that they can be infertile too. They even refuse to undergo fertility tests! The scientific truth is males account for 40% of infertility issues and females 40%. A combination of both partners may account for 10%, and the other 10% of infertility cases are from unknown origins.

2)  When a man takes long time to come to term with his infertility, he is also indirectly wasting his partner’s precious fertile period by postponing the infertility treatment.  In the field of infertility, the age of women matters the most. Woman’s fertility start to decline rapidly after the age of 35 and by the time a man accepts the fact that he needs fertility treatment to father a child, the woman’s fertility can also be compromised. As a result of this they have to suffer a double whammy - sperm issues + the egg quality issues. This can make the fertility treatment futile and can also destroy your chance of adopting a baby too (The combined age of both the partners should be less than 90 for being eligible to adopt a baby!). Time is too precious as far as infertility is concerned; try not to waste it because of your ego and ignorance!

3)  When you are an infertile partner in a relationship please learn to give proper respect to the rights of your fertile partner. Be open to the treatment options available. This will give a chance for you and your fertile partner to procreate! If you are not open to treatment options you are curbing the basic right of your fertile partner too!

Now some questions to ponder!

4)  Why are many IVF doctors insensitive to human emotions? When a doctor gives a talk about donor egg isn't his or her responsibility to be empathetic and compassionate? Should doctors behave just like a business man or woman? Why is the moral and ethical value associated with doctor profession completely lost?

5)  Why is IVF so expensive? Should money determine the availability of a scientific invention? As patients, what is our responsibility in bringing down the cost of IVF? Should we just be passive and believe foolishly what we are preached by the doctors? Why are IVF rates so variable? Shouldn't there be a fixed price for ART treatment?

6) What can we do to fellow infertile couple who are unable to afford costly infertility treatment? Should we just leave everything to God and foolishly believe the philosophy that having a child is only in God’s hand?

7)   How can we believe the success rates advertised by Indian IVF clinics? What is the proof? Why don’t we have a committee to regulate IVF/ICSI cycles performed in India? Don’t we need a central registry where every infertility clinics ART cycles are recorded and their success rates evaluated? The information thus collected should be freely available to public use. It should be made mandatory for every patient to report their cycle details to the central IVF registry. Who will make that happen?

8)  Why don’t Indian newspapers and magazines write about these problems which are haunting the field of ART in India? Why do they focus only about the emotional and social issues associated with IVF treatment? Who will write about dishonest IVF doctors who just work for the huge amount of money they earn?

9)  Why don’t insurance companies in India fund infertility treatment? Why don’t infertile couples who undergo so much emotional torture and financial problem fight for their rights?

10) Why Indian patients are so reluctant and lazy to learn about the scientific details of the most important and costly process they undergo? Why they allow themselves to get tormented and cheated?

I want every infertile couple who read this come forward and share their ART (IVF/ICSI) experience. Please, make the world know what you are going through! This will help fellow infertile couples to have a better treatment in the future. I wish everyone should make their voice hear by some means - it can be a blog, a newspaper or whatever media is available! If you have a blog please let me know!

If someone who has undergone IVF/ICSI in India is reading this post please share your experience with me (actually with us!). If you want to be anonymous I am perfectly OK with it. My e-mail ID is manjupadmasekar@yahoo.com. Write to me so that you can speak about your experience through my blog. People who want to submit  reviews about Indian IVF doctors are also most welcome to do it; be frank and be honest when you write a review!

Little drops of water make the mighty ocean! Let us do our best to make the field of ART a better place for Indian infertile couples!