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Monday, July 30, 2012

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!

27 comments:

  1. Thanks for sharing this useful information and ideas with all of us. Keep sharing more information in the future. This really helps to us.
    In Vitro Fertilization in india

    ReplyDelete
  2. To be completely honest with you, IVF success rates aren't good. Although I can tell you that we did fall pregnant in our first cycle, this isn't the case for the majority of couples. The older you are, the less likely it is that you will conceive. With regard to women under thirty five the average rate of success is just under 30%. This goes straight down from there to just under one percent for women over 44 years of age. These are harsh statistics. Effectively, what this means is that more than sixty-six per cent of you will not be successful and in the scenario in which you don't have any more embryos you will be requested to withstand the expense and stress of another hormone injection cycle.
    IVF Success Rate in India
    Surrogacy in India
    fertility treatment
    IVF Mumbai

    ReplyDelete
  3. Fertility treatments have come up as a hope many couples. They have helped a lot number of people in bringing their bundle of joy in this world and attain motherhood. Though, it is said that not all fertility treatments are suitable for women who are trying to conceive. Treatments of fertility mainly depend on the cause, age, for how long one has been infertile and many other personal preferences.

    ReplyDelete
  4. Embryo donation is seen as an alternative route to pregnancy. It helps couples that would otherwise be unable to conceive, carry a pregnancy to term. A relatively new procedure, embryo donation involves using another couple's embryos in order to conceive. These donated embryos are then transferred into your uterus using frozen embryo transfer...


    Best Infertility Treatment in India


    Embryo Donation India

    ReplyDelete
  5. What a great blog, truly inspiring.
    It's so great to see you've gone into detail, and aren't afraid to be honest and open. The IVF process can be a highly emotional one, and does not always have a happy ending, so it's refreshing to see someone speak so openly about it.
    This would be an invaluable resource for anyone looking to take the first step on the IVF journey, and because it's your personal journey, this will really help those people associate, and could convince them to start the journey

    Inspiring words.

    ReplyDelete
  6. Can any one sugegst how is Bourn hall gurgaon clinic for IVF.

    ReplyDelete
  7. hi. it is nice to see how NP has come to terms with the problem.
    yes, there is much less awareness with respect to all other questions that manju has raised. it will take long long time in india for changes to happen.
    i have had two ectopics and was surfing to know my chances with IVF. the statistics are harsh. but after all this, i am now wondering is all this really worth the effort, money and emotional trauma? i see that NP finally says she will manage living without kids and make her life better in other ways. i am now finding solace in spiritual reading. but some days are hard to go through.

    ReplyDelete
    Replies
    1. Dear commenter,

      Thanks for your valuable comment !

      How old are you ? If you are young IVF will provide you with a reasonable chance of success - not every IVF clinic or doctor is bad ! Please do not give up on your dreams.

      If you wish to please write to me !

      Manju

      Delete
  8. Appreciative, useful information,,get this that Dr Elke Klerkx of the Genk Institute for Fertility Technology in Belgium led the international research team that has been instrumental in developing this ‘cheap kit’ for the
    ivf treatment .

    ReplyDelete
  9. thx for sharing reviews.....want to know more about Bourn Hall ,Gurgoan ..success rates are there of ivf? there??

    ReplyDelete
  10. Good. i really appreciate you for the work you have done. firstly i even thank that women for sharing her experience, her journey on IVF treatment. her experience can help the future generation couples who are going to have a baby though IVF process.

    Site: http://kiranivfgenetic.com/

    ReplyDelete
  11. Good. i really appreciate you for the work you have done. firstly i even thank that women for sharing her experience, her journey on IVF treatment. her experience can help the future generation couples who are going to have a baby though IVF process.

    Site: http://kiranivfgenetic.com/

    ReplyDelete
  12. Hi manju,
    I also want to go for ivf treatment.but I am not aware of good ivf centres in gurgaon.can u suggest me the best one? How about bourn hall?
    Regards sakhi

    ReplyDelete
    Replies
    1. Sakhi, sorry I have no idea about clinics situated in Gurgaon. If you have anyother questions regarding IVF , I will be happy to help. Good luck !

      Delete
    2. Hi Manju,
      I live in the UK and have gone thru one failed IUI(In India) and one failed IVF(In UK).
      Early next year I will be going in for a frozen cycle here in the UK. I don't have high hopes from the frozen cycle as I know their success rates are very low.

      Would anyone be able to help if I should go ahead for fresh cycles after that in UK or in India. I am really confused and loosing time as I am going to be 33 soon.

      Please help.

      Delete
    3. Dear PM,

      Frozen cycle has a slightly higher success rate than fresh cycles. So, lots of good luck. Have hope !

      I would prefer to do IVF in India, it is much cheaper. You can even do multiple cycles in a short time. If in UK, insurance covers infertility and if there is no long waiting period, you can try it there, otherwise, India is the best.

      But, I hope you get pregnant this FET cycle. Good luck !

      Delete
    4. Thanks so much for your prompt response Manju!

      I am going in for the frozen cycle early next year, you are right I am kind of loosing hope which I shouldn't, though I am trying not to :)
      You said in India they can do multiple cycles in a short time, how does that happen?

      Once again thanks a lot for your response, it means a lot to me!

      Thanks

      Delete
    5. You will not have long waiting time, as in UK. You can do back to back cycles.

      Delete
  13. Sd11 .. very nicely written and I am able to relate to it . 3 iui failures .. 1 ectopic .. 1 tube lost .. 1 st ivf negative .. 2nd ivf abandoned due to poor embryo .. 3rd ivf canceled due to poor response .
    Waiting to start off with donor eggs. Doctor s can make a huge difference to one's mindset . One of my ivf doctor wasn't ready to help as we went to other fertility clinics for treatment after an ivf failure at her Centre. It's hard to keep oneself positive when you are going through such an emotional roller coaster . Waiting for some good donor and good news . Baby dust to all :-)

    ReplyDelete
  14. I had similar experience at very renowned hospital chain in Dehi.....I went to their Gurgaon branch via feedback from somewhere. They completely make fool of us without guiding on the status of our eggs and the doctor was very keen from first ultrasound to opt donor egg or sperm. I saw one couple there opting for surrogatacy. Its their businesses these days to exploit and encash the emotions of infertile couple and get rid of failure cases very easily and project them as fault in couples bidy. I end up spending 2.5 lakh last year in Nov and had nothing in my hand .....except depression ......

    ReplyDelete
  15. there are a lot of unscrupulous people in this 'business' of infertility. the doctors have become greedy and want a return on their investment in costly equipment... apart from monetary loss, the emotional loss is also big for patients...

    ReplyDelete
  16. Thanks for the information of IVF and ART

    ReplyDelete
  17. Hi
    we live in US.we have been through different cycles of IUI but no sucess.doctor suggested IVF to us.
    we are planning to do IVF in India.now in a lot of confusion which IVF centre in India is best for us.
    there are IVF clinics at my hometown too.We are in a confused state where to go for IVF.

    ReplyDelete
    Replies
    1. I went to a clinic in Mumbai. After 5 failed IVFs, we had our baby after doing IVF with them. It is called Malpani Infertility Clinic.

      If you prefer to go to your hometown do so. But, please read my post : My advice for someone starting their first IVF clinic. It has a great piece of suggestion on how to select a good IVF clinic.

      Delete
    2. I went to a clinic in Mumbai. After 5 failed IVFs, we had our baby after doing IVF with them. It is called Malpani Infertility Clinic.

      If you prefer to go to your hometown do so. But, please read my post : My advice for someone starting their first IVF clinic. It has a great piece of suggestion on how to select a good IVF clinic.

      Delete
  18. Hi there,

    I am 44 and had 2 miscarrages in last 3 yrs. I accepted them as " unviable pregnancy" ..there might be something not right in those featus , hence my body rejected. I am quite happy to embrance pregnancy through donors egg as long as there is transperncy, clarity and honesty, sound knowledge and expertise by the IVF centres. If I fail IVF I am ready to accept as my destiny as long as it is not due to the incompetency of a doctor or an IVF centre. I am ready to spend my time, money and emotional energy not to veined by bad practice. So people please guide me to an honest IVF centre and a good specialist in or near Delhi to save me disappointements. I hope I am making sense. Cheers

    ReplyDelete

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