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Thursday, August 2, 2012

How going through IVF has changed me !

How has IVF treatment changed you as a person ?

I would rate myself as a very bold and outgoing person. IVF is the only way for me to have a baby. My quest for a baby is so strong that I have decided that I will not give up IVF until I reach my dream.  In the beginning , I was very reluctant to talk to anybody regarding my IVF journey – I simply told people I have a problem with conceiving and we are taking treatment. When the first IVF failed it was painful. Since I am a biologist and hold a doctoral degree in human biology , I understand the uncertainty of the IVF process. When the second IVF cycle was successful , we are very happy , but the happiness was short lived. In the 9w1d scan we learned that our baby is no more. That is the greatest pain I have undergone in my life.

I started to realise that life will not always go as you expect! Life’s uncertainty  hit me very hard. I understood that fretting and fuming will only make me worse. The pain I experienced made me empathetic. I stopped judging people and learned to accept them as they are. I started to fill myself with positive emotions. I learned to live each day happily.  This journey helped me and my husband to bond strongly. The more pain and happiness you share , the better your relationship becomes. I started to love and respect him for the way he is (very understanding, not complaining and not blaming).  He started to appreciate and love me for how strong I am. You learn a lesson from every adverse event that happens in your life! I learned to be strong, humble, resilient, rational, forgiving empathizing and hopeful.

How did you cope with the emotional rollercoaster ride ?

My dad brought me up in such a way that I have never fallen into superstitious beliefs. I was depressed after 3 IVF cycles. I used to cry a lot. I did carry negative emotions like anger and self-pity. But I slowly realised that it is doing me more harm than good.  When I started to write I became a new person. I wish every woman undergoing IVF learns to let out their emotions in a positive way. Try not to hide your infertility , and share your emotions with people whom you trust- for sure, you will feel better ! I also owe a lot to Dr.Malpani and his blog. When I feel emotionally down I open some of his blog posts and read it. This changed me as a person. I started to see my infertility struggle in a completely different way. I learnt to step outside myself and look at the breader perspective. I became a regular reader of his blog and started to write feedbacks. His writing and his kind appreciations kindled my passion in writing.  When I started to express myself through writing I began to think clearly. This made me more confident. Here’s a link for one of his blog post which I like very much!



How do you cope with the social pressures ?

Being infertile has not changed our social persona, and we attend all parties without fail. People are not as unreasonable as we fear they will be. They will be curious to know why you do not have a baby, but once you tell them what you are going through , most people are very kind and compassionate. I have never encountered any awkward moments in social situations until now. Be happy, bold and cheerful - people will appreciate you. When you harbour negative emotions like anger, jealousy, self-pity, moodiness , you will suffer within yourself and make other people suffer too! This will also make you look at everyone with suspicion, which will in turn prevent you from appreciating the goodness in them.

Recently, I underwent Frozen Embryo Transfer. I am now in my 2ww.  My friends in Germany know it-everyone! I am very happy with how they treat me. I get lots of love and positive thoughts from them. Every kind word keeps me going! Everyone is very careful not to hurt me in anyway. Yesterday, my friend Priya gave me a warm hug and a kiss (we came to Germany only this sunday from Mumbai) I will never forget the love I felt in it. If I hadn’t told them , I wouldn’t have received all this extra care and kindness !

Do you have to put on an act when a cycle fails, as you are hurting on the inside ?

No! I don’t think so. The first two days after a failed IVF cycle will be horribly depressing but I normally get over it , and everyone has to get over their pain and trauma, don’t they? When you brood over something, life becomes stagnant and it is not good for you and your loved ones. But other days are very normal. When I am with friends , I don’t even remember this. I have seen some people suffer horribly both physically and mentally. I consider the pain of infertility 1000 times lesser than what they endure!

What's the atmosphere following a failed cycle like?  

As if someone close is dead! I worry about my husband and he worries about my emotions :) This goes on for a day or two and we get back to routine. But the scar remains for a longer time.

Why have you said that the IVF journey is a ride that you come to "dread and enjoy" at the same time?

Undergoing IVF can be a dreadful experience. A failed cycle causes horrible emotional pain.  For me the pain is not because of lost money or because of physical discomfort. My pain is unbearable because of the trauma of shattered dreams. However much I try to control my thoughts , I cannot stop myself from imagining my potential baby - and the joys my baby will bring us . I know that we should not count the chicken before they are hatched, but every IVF cycle has the possibility of ending up in a baby and I dream a lot about a positive outcome , and the happiness associated with it. So, when the cycle fails , I realise that my dream will not come true in the next 9 months , and that moment is horrible! I advise all women undergoing IVF not to raise their hopes too high. It is good to be positive but it is wise to be cautiously optimistic!
But there are also joys associated with an IVF cycle! I am a biologist and the entire IVF process is scientifically so beautiful to watch. I wait for each ultrasound to know how my ovaries are reacting to the drugs, how many follicles I produce; and when you see your embryos under the microscope - it is just amazing! Can normal fertile women see their offspring as 4 celled or 8 celled embryos or as a blastocyst? No , while I can! I will have a photo of my children as embryos and I will show them how they looked in their earliest developmental stage (I am crazy , right!). This is why I enjoy the process. Being a scientist has helped me to enjoy the journey. Don’t you enjoy a roller-coaster ride, even though it is full og highs and lows?  IVF is like playing a jackpot. Like a drug, it gives you a high! If you are someone who enjoys thrills and suspense , you will enjoy IVF!

What do you do to distract yourself?

Write! Writing has become my passion. It helps me to express myself better. The more I write about my pain and happiness, the more relaxed I feel. Sharing allows me to vent ( though my husband feels I am stressing myself by writing so much :) After I started writing , my confidence level has gone up, and I think more clearly and feel better. I have to thank Dr.Malpani because he is the one who encouraged me to write. He wrote “ You are obviously a very thoughtful person! I do wish you'd keep a blog - this will help to provide a useful outlet for your bottled emotions in a constructive fashion. Keeping a journal has been proven to help patients cope better - and helping others is the best way of helping yourself!’ That is how my blog is born even though I had thoughts of it long back!” I also love cooking. I have many friends. I believe life is very beautiful and I read books :)

Does maintaining a blog help you personally?

My blog is a place where I can let out my bottled emotions in an honest manner. This has really made me a constructive person. I no longer whine or cry thinking about my infertility. I have become a more positive person. I have started to believe that helping others is the best way of helping yourself. I recently got a comment from a reader, she said ‘Dear Manju, I am so happy to have found your blog; I have problems of thin endometrium and I have learnt a lot from your blog! Thank you. I cross all my fingers for your transfer’. When I read this, I was so overjoyed that I cannot explain my happiness in words. I understood the meaning of Dr. Malpani’s words!

Is watching your family suffer painful ?

The most painful part is to see your loved ones suffer. It is a very natural urge for elders to want to see their grandchildren – after all, the selfish gene hard wires propagation in our DNA ! My in-laws are very good. Sometimes my mom-in-law would say ‘will you give us a grandchild before we become very old?’ I feel horribly upset for my inability to fulfil their rightful wish. I used to cry thinking about their pain but now-a-days I just try to calm myself by thinking - ‘not being able to see their grandchild is their problem which they have to deal with. I am doing my best - and I have lots to deal with for myself’ :) Thus I have made peace within myself! This attitude helps me! My mom is a very understanding and a very positive person. She keeps me strong!

Does the sight of a happy family make you jealous?

I wish I could also have such a cute little family and I look at them with lots of appreciation.  I am mature enough not to allow negative emotions rule me. I know how to keep myself and others happy!

Do you start blaming God?

I do not blame God but my concept of God has changed a lot very recently.  Actually, when I got rid of the ‘God Factor’ from my infertility I started feeling better. I no longer pray to God to give me a baby.  I believe infertility has more to do with science rather than the concept of God. I have money, access to a good IVF clinic and I am doing my best I can. I will win my jackpot one day! :) If not I will have the satisfaction that I did my best!

I do not want to connect God with my infertility (I do not want to praise or blame God for what I am going through!)


This is what I wrote in one of Dr.Malpani’s blog post:


Thank you very much doctor for this blog post. As a patient suffering with infertility I am constantly advised by my friends and family to try different forms of worship ( for example lighting lamps to a particular God or Goddess at a particular time of the day TO visiting certain temples and pray that I will offer something in return when I have my baby (!) ) . I do understand people say all these things out of love and they are desperate to help me out. BUT the pain that they create to me or an infertile woman (nobody ever say such things to an infertile man : ) is not easy to describe. First they are interfering with my own beliefs and ideology. Second they indirectly tell me that not able to have a baby is a punishment from God and I should pacify Him with my prayers and bribe Him (what to call it when I should pray that I offer God something and expect something in return?). When I brush off their instructions with a smile (I have to be diplomatic!!!) they consider me to be a woman who is proud, stubborn and not God-fearing I have no idea who invented this word God-fearing! After going through this IVF journey for 3 years with no baby in hand still I am adamant and I have never done anything I am advised to do. I am not an atheist. I love God or the concept of God. But I believe that spirituality is not about seeking an all in all cure for our physical and mental ailment, spirituality is all about sustaining life and living happily amongst those ailments!
When my IVF cycle starts I ask God for the moral strength to go through the process and have a positive outcome. When my cycle fails I ask Him to give me the strength to bear the pain and come out of it as early as possible. So what happens when a woman undergoing IVF puts too much of her emotional energy thinking about God and doing things to please Him? When the outcome is positive everything is well and good (even then they learn a wrong lesson in their life that pleasing God by various means will solve their problems in life) but if it is negative she has to again face a huge amount of emotional turmoil because in the first place she has to deal with the failure and she has to also come to terms with why God has let her down? When I believe in science I understand the limitations but when I believe God I do not understand the limitations because from young age I am taught that God is a magician who can perform miracles. 

When my last cycle failed my mom and my husband are totally broken down including me of course! When I wanted to go to temple after we got the negative result in hand ( where do I get solace more than telling Him my pain) both of them cannot even think of visiting God ☺. For me going to temple would calm down my mind because I didn’t have any unrealistic expectations on the power of God. The pity is that after undergoing such a difficult process both physically and mentally (from will I develop enough follicles or will my body let me down to am I doing anything wrong that will affect my embryos from implanting) I am the one who consoled both of them !!!
Belief in God will not help with the IVF roller coaster ride. Only proper patient education or as you say information therapy will help. If God is the one who decides which human being should have baby or babies or if He is the one who is in charge of all the babies coming into this world how will you explain teen-age pregnancies, abortions, so many orphaned road-side children, children born to drug addicts, HIV positive people (I am not meaning that HIV +ve people should not have children, I just mean how children are born with HIV with no fault of theirs), paedophiles and so on?? When nature can create disasters how can such a well-controlled IVF process be unnatural and interfering with God’s plan? IVF is a boon to infertile couples and IVF doctor and embryologist holds a much responsible position than that of God because at least they have some control over the entire process while God doesn’t. God has given humans the knowledge to find out IVF technique and His work ends there in helping infertile couples and the remaining responsibility he has given to doctors like you!
When writing this even some of my doubts and fears have cleared out. Thank you once again. Please do help patients who suffer with emotional turmoil because of unrealistic beliefs and expectations and I am sure you are doing it already.

How do you deal with questions from friends and acquaintances?

I tell them the truth that I have problems with my fertility apparatus and we are undergoing treatment. People are decent enough not to ask further questions!

Do you dread conversations about kids? 

No, definitely not! I try to spend time with kids when I am around them , and I feel very happy when they like me . Most kids get attached to me very quickly , and I am very proud of this:) When my friends talk about their kids , I listen to them.  I realise every mother loves to talk non-stop about their kids, and I love to say something nice about their kid so that they feel happy. But I do feel uncomfortable when a pregnant woman talks how her baby moves inside her – this does hurt me. It doesn’t mean I am jealous- it’s just that I have such a deep longing inside me to experience all those wonderful moments , that I feel uncomfortable!

When friends complain about their kids' tantrums etc, what's your reaction?

I tell them they need to learn to count their blessings - not having a child is painful, because life can become routine and boring . Children add variety !

Do you feel at times that life has been unfair?


I haven’t felt life is unfair - I always believe my turn will come soon.

Does reading about others who've been through the same experience help? 

I constantly visit infertility blogs and bulletin boards. I get lots of information and support from the ladies there. When someone is in the same situation as you are, they understand your pain better. When I hear positive stories from them it helps me to keep going! I am very grateful to women who are bold enough to share their painful infertility journey. I find Indian woman are very reluctant to do this , and I am sure if they come out of their shell they can deal with their infertility a lot better.

Do you constantly surf the net for more information?

Definitely yes! The more I learn about my condition , the lesser is my pain!

What are some of the misconceptions regarding infertility which irritate you ?

1.      “ Relax - and you will get pregnant ! “ ( Telling me to stop thinking about infertility is very unhelpful. I do not obsess over it, but I don’t know how it’s possible to stop your neurons from firing !
2.      “ Adopt - and because of the happiness you will get , you will fall pregnant naturally!”
3.      “ Stop eating heat generating foods (chicken, papaya, pineapple etc) and you will become pregnant”
4.      “ People who are good people will have children for sure !”   (This is very hurting! One woman told me ‘Manju, there are woman who get pregnant, even when they don’t have a good heart. You are good – hearted, and you will have your baby soon ). She meant this as a blessing, but those words haunted me for a long time.
5.      “ When you are in the company of others with  babies , you will get pregnant”
6.      “ Pray to God ! “ ( There’s lots of conflicting advise  regarding which God!) The   message seems to be – if you offer something to God, in return he will give you a baby ! (I think I am a total failure at this, as I have no idea how to bribe God effectively!)

What effect do needles have on you now?

I am not afraid of needles. To tell the truth the Gonal F needles are very small and you don’t even feel it most of the time. But my husband used to suffer as he is the person who used to give me the injections. You must see the bundle of different emotions in his face! (Fear, concern, sympathy and a sense of achievement when he does it right :) He used to do it very carefully, slowly and softly, and I hardly get any pain. But if the needle damages any of the smallest blood vessels under the skin, a small drop of blood oozes out. His face changes immediately. I could see the pain in his face. He used to ask with fear and concern ‘is it paining?’ I will never forget those moments in my life time. When one of my IVF cycles failed , he was totally broken down. I asked him ‘why are you worrying? Are you worrying about the money we lost?’ He looked at me with tears brimming in his eyes ‘Manju, how long do you have to go through this torture? How many injections you took! How much discomfort you underwent! But now everything has gone in vain’. That is the moment I realised that he is worrying for me like I am worrying for him, after a failed IVF cycle. All these events have bonded us together very strongly!

Did the injections/hormones you took for IVF affect you ? 


My RE in Germany used to ask, ‘are you ready for your anti-aging drugs’ :) During an IVF cycle , estrogen levels in our body rise. He used to say that people get nice sleep and , good skin because of that. I am not sure how true it is , but those words always made me comfortable about the medicines I took. I never got any serious side-effects , but I know people who suffer from nausea , fluid retention and headaches. Perhaps every body is different. But there is a drug called lupron, which did make me depressed and irritated. Otherwise everything else is fine. When undergoing an IVF cycle , you obviously undergo a variety of positive and negative emotions. I remember that I did end up with crying spells and agitation. Might be it is because of medicines , or because of the emotional impact of the IVF cycle.

Does the sheer amount of expenditure involved make you want to give up?

Fortunately, we are financially safe. I am sure that for many people , money is one of the reasons for giving up IVF.  For some, because of the extreme costs involved , IVF is not even an option. One woman whom I talked to said ‘I went to an IVF clinic in Chennai and asked for the IVF cost-they said 1.5, I asked them whether it is 1500 Rs and they replied no it is 150000 Rs and I just moved away from that place very quickly’. She told me ‘we are not rich, we cannot afford it!’ She is trying to conceive for 8 long years and she is young! I am heart-broken! Why is life so unfair? If money decides whether an infertile woman can have a baby or not , then what role does God play?

How different was your experience in Germany as compared to your experience in India?


German laws are very strict when IVF is concerned. They cannot select the best embryos after they undergo cleavage (cleavage pattern is important for scoring and selecting good embryos). They have to decide which embryos to transfer when the embryos are in the 2PN stage. They can only transfer a maximum of 3 embryos and not more. This is why doing an IVF treatment in India is advantageous.

I felt very comfortable doing IVF in India. Actually, it was in the IVF cycle I did with Dr.Malpani clinic that I got the maximum number of eggs collected (24 eggs), and the highest fertilization rate (20 eggs), I got 17 embryos and I also saw blastocyst formation with my embryos for the first time. I also had 7 embryos to freeze (all embryos are of great quality). This is great considering my history of producing fewer eggs ( I produced only 3, 7, 9, 5 and 5 eggs respectively in the 5 IVF cycles I did in Germany). I am very happy I decided to come to Dr.Malpani for treatment. He advised me to take DHEA. It is not a proven therapy , but it has helped some women in producing more eggs. Obviously it worked for me! I am sure the egg collection skill matters too. Even though I had more follicles developing during the IVFs I did in Germany , they always retrieved fewer eggs than the number of follicles counted during ultrasounds. But Dr. Anjali did an excellent job! We counted fewer follicles (definitely not 24 follicles) and I ended up with 24 eggs. I still remember the happiness I felt when Dr. Anjali said ‘Manju, we collected 24 eggs from you’.  I felt my body is perfect.  Because, every time in Germany I used to worry that my body is not responding as it should for my age! (I was 29 years old when I did my first IVF , and I got only 3 eggs :( And of course Dr. Sai (embryologist) did his job perfectly! I believe India has people with high technical competence as far as IVF is concerned.

Emotionally I got so much help from Dr.Malpani. He used to answer my e-mails within 24h of mailing him. In this way I could get a clear answer for all my doubts which helped me to stay sane. When I become emotionally down or fearful he used to send me the serenity prayer or write a single line like ‘Manju, see the glass as half full’. When you hear such comforting and positive words from the IVF specialist you really feel great! But not even once he promised me something like ‘Manju, if you do your IVF cycle with me you will definitely have your baby’. I sometimes really wish that he could say it to me. But he is honest enough not to say things which are not under his control. I think emotional support is as important as the technical competence of a doctor! I will strongly advise fellow women undergoing IVF not to go to a doctor who do not have enough time to talk with you and hear your concerns. Selecting an empathetic doctor is as important as selecting a competent clinic. I am now lucky to have both. Emotional support is very important during the IVF process and I never received it from the doctors in Germany. They treated me more like a machine rather than a human being!

8 comments:

  1. These are the right words for all these feelings ! I recognize myself so much in your words. Thanks for writing them down, it feels good to read them :-)

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  2. Thanks Caroline : ) I am sure most women who go through the struggles of infertility can relate to my feelings! Hope you are doing good!

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  3. This is a beautiful and touching post. I feel so humbled to read this - you have gone through so much more than me and emerged so wise and strong. It is good that you have kind and supportive friends. It's also interesting to read about the difference between Germany and India in terms of fertility treatment.

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  4. I am so touched by your post. Having failed ivf many times, my confidence has start to waiver but yet a part of me still do not want to give up. I have never been pregnant in my life and sometimes I wonder will I have the opportunity to get there one day. As much as I do not want to give up but financially I have to.

    ReplyDelete
    Replies
    1. Dear jg :)

      I am happy that this post helped you. I know the pain of not seeing BFP after repeated IVFs. But it will happen. I wish your day comes soon. If you would like you can share with me the reason for IVF ? Perhaps I could share my knowledge with you. I will be happy if it could help you in some way.You can mail me too : manjupadmasekar@yahoo.com.

      I wish you lots of good luck. I will soon make a post about my IVF journey, perhaps it might give you some hope and confidence.

      Love,
      Manju

      Delete
  5. I recently came accross your blog and have been reading along. I thought I would leave my first
    comment. I dont know what to say except that I have enjoyed reading. Nice blog. I will keep
    visiting this blog very often. I am an IVF treatment in Chennai.
    I feel great after reading this information. Please make update I will be regular rss to this site.
    ivf centres in chennai

    ReplyDelete
  6. Thanks for your blog. It's so reassuring to have people who understand what's it is like to be on this journey. I've been through 2 Ivfs and a cancelled fet two weeks ago. I was so disappointed but have accepted it now. We have several still frozen and will try again soon.
    Your comments about spirituality were lovely. You have helped me to be more at peace with my current journey and more accepting of what is and what will or may not be in the future.

    ReplyDelete
    Replies
    1. Thank you too for taking your time to leave some kind words ! :)

      Lots of good luck for your upcoming cycle ! If you would like, you could share with me your cycle details. I will be happy if I could be of some help to you.

      Manju

      Delete

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