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Wednesday, August 29, 2012

How to acquire emotional resiliency in order to cope with the IVF roller coaster ride? - Part I

IVF can be a financially, physically and emotionally draining process. It can be extremely stressful for most people, and while a little stress is useful in coping with life’s difficult moments, too much stress can be paralysing.

What makes the IVF process so stressful?

  1.  IVF treatment is costly!
  2. It is a time-consuming process 
  3. The outcome of an IVF cycle is always uncertain 
  4. Women undergoing IVF treatment have to take lots of drugs mostly in the form of injections. The physical and mental changes caused by such hormones (drugs) can be stressful for many. 
  5. Low success rate (40-50%) per cycle 
  6. The taboo associated with the IVF process 
  7. Social pressure of being infertile and the need to prove yourself by having to succeed in the IVF cycle! 
  8. A failed IVF cycle can cause enormous emotional pain and psychological damage

Going through IVF needs lot of emotional resilience. Even people who are mentally tough find it hard to cope with IVF roller-coaster ride! If you are someone who is not resilient by nature, the IVF process can cause significant damage to your personality. I have heard about women who attempted suicide after a failed IVF cycle. Marriages have broken up because couples were unable to bear the stress the IVF process placed on their relationship. Many couples become demoralized and give up completely. But, I have also seen couples who bonded more strongly because of their IVF journey. Some couples underwent several IVF cycles with ease and confidence, before their baby dreams finally came true. What contributes to this difference?

Learning to ‘bounce back’ to your original mental shapeafter an IVF failurewill help you to lead a normal life and will also help you to prepare for the next IVF cycle. Are you someone who has fallen prey to hopelessness and depression because of undergoing an IVF process? Don’t you think it wise to be resilient and fight for your baby dreams than to give up the process prematurely and regret it for the rest of your life later on?  Is it possible to undergo this IVF roller-coaster ride without falling into the quicksand of negative emotions which drain all your energies? The answer is; yes it is possible! Below are a few tips which helped me to cope with this emotional roller-coaster - and I wish these will help you too to acquire emotional resilience so you have a pleasant IVF journey!

I am a woman who had undergone several IVF cycles without a baby in hand! After the first few failed cycles, I was torn apart emotionally.  I did suffer from low self-esteem, anger, crying spells and depression. Life seemed to have lost its lustre. But, at some point, I realised that this attitude is not going to help me. There were two options in front of me:
 I can feel sorry for myself, make my life and my partner’s life miserable, blame my destiny, fall into the grip of depression, and shut myself from the outer world and give-up the entire baby-making process.  

Accept the reality that life isn’t fair all the time, be happy for my blessings, concentrate on things I love most, spend more time with family and friends, share my IVF experience with people who need guidance and support, work towards making my life (and the life of others) a little more beautiful, hold on to my baby dreams and fight for it!

I decided to take the second route and that has made a wonderful difference in my life! It gave me the courage to undergo the next IVF cycle with much more ease. I agree that every failed IVF cycle is still hard to face but I have now acquired the ability to bounce back much more quickly and with much more determination than before. I wish every couple undergoing IVF learns to be mentally tough so that this journey becomes a little easier.

How to acquire emotional resiliency in order to cope with the IVF roller coaster ride? 

1)   Be well-informed!

Remember- knowledge is power! Acquiring knowledge about the IVF process will preserve your emotional well-being. The difference between going through an IVF process with and without knowledge is like crossing a busy road with and without vision. Understanding the intricacies of the process will make you feel less scared, more confident and will also help you to take control of your situation. This in turn will make you feel strong and powerful, rather than weak and powerless. Knowledge of the process will also help you to accept the unexpected twists and turns inherent in an IVF cycle (for example, the ovaries might not react as expected to the stimulation, there can be fertilization failure, the embryos might fail to divide etc). This will prevent you from feeling betrayed and hopeless when the cycle does not go as per your desire! When you are ignorant about the process, you tend to strongly believe that a failed IVF cycle is your body’s fault - or your doctor’s. As a result you lose confidence in the entire process, and going through more cycles becomes impossible. This puts an end to your baby dreams. While it is true that ignorance is bliss, such bliss can turn into a curse when your cycle fails! So gain enough knowledge in order to prevent an emotional breakdown when going through IVF.

2)   Have realistic expectations

When I started my first IVF cycle I was full of unrealistic expectations. I read only the success stories on the internet. I thought I will end up with several eggs and many embryos. I believed that I will easily get pregnant. But everything went against my expectations. I had only 3 eggs collected during my first IVF and had only one embryo for transfer. Even though the second IVF ended in a pregnancy, I suffered a miscarriage. I was not prepared for any of this. I had naively expected only the best to happen, and I was not prepared for the worst! This took a toll on my mental strength and I was totally shattered! So when undergoing an IVF cycle please prepare yourself for the worst. Do not expect that your cycle will end up with many eggs and embryos. Do not think that you will get pregnant in a single cycle. Do not start dreaming of your potential baby immediately after the embryo transfer (I know it is difficult!). Although it might sound pessimistic, this is hard-earned wisdom from an IVF veteran! It is wise to be pessimistic than to be foolishly optimistic and fall into depression. Having realistic expectations will help you safe guard your peace of mind and also will help you cope better with failure.

3)   Accept the fact that life isn’t fair always!

The emotional impact of a failed IVF cycle can be disastrous.  ‘I am a good person, I haven’t done any harm to anyone, I have spent all my hard-earned money for this process, I am so fond of children, I prayed to God everyday and why did this happen to me? Why did God punish me?’ These are the question which will haunt you after a failed IVF cycle. Remember that life isn’t fair and it doesn’t have to be! Just like good things happen to bad people, bad things will happen to good people. When you want everything to be fair in your life you are prone to several heartbreaks. When you accept the fact that life isn’t always fair, you will learn to cope with a failed IVF cycle too.

4)   Weed out negative emotions

Life is a collection of emotions. You are perceived as what you emote. Healthy emotions will help you to stay strong and happy while unhealthy emotions can cause serious harm to your mental well-being. Infertility plants fear, mistrust, lack of confidence, hatred, envy, worthlessness, depression in you. IVF is the last resort for any infertility patient. So, when you start your IVF journey you are already tormented by all these negative emotions. Most IVF patients carry emotional baggage filled with all these harmful feelings. IVF is a very stressful process and carrying all the unwanted sentiments in your mind will corrode your positive spirit which can be a very valuable tool when going through this stressful process! When an IVF cycle fails, such people tend to break down completely. The first thought that will come to their mind is – I failed even in my last resort to have my baby, and this in turn adds to the mental stress and strain! But if you are wise enough to weed out these negative emotions and plant positive emotions in their place, you will feel better and the persons around you will feel better too! How can we do that? The answer is simple – Learn to live in the present! Learn to experience the happiness within you! Happiness is the best antidote for weeding out negative emotions. If you decide to stay happy, nothing else can prevent you - not even the stress of IVF. Happiness creates an aura of positive energy around you and every other positive emotion like hope, optimism, compassion, gratitude, empathy, serenity, interest, and love will sprout within you. You should realise that it’s not because of infertility that you are unhappy; you decided to be unhappy because of your infertility! The happier you are, the less stress you will feel. This will help you to balance your mind and cope with the ups and downs of an IVF cycle. Remember the quote “No medicine cures what happiness cannot.”

5)   Express yourself!

The best way to be stress free is to be expressive.  Many couples undergoing IVF do not have the chance to express their fears and concerns, their struggles and heart-breaks! Infertility is still viewed as a social stigma in many countries. As a result of this, many couples are reluctant to talk about what they are going through. This causes serious emotional distress. When you are going through IVF,find a way to vent your emotions in an honest and constructive manner. My way of relieving stress is to write what I am going through. Maintaining a blog has helped me a lot. Sharing your feelings with people who are in a similar situation has an immense positive effect on you emotional well-being. You will feel good when you realise that you are not alone! Internet is a boon for infertile couples. You can get access to so many infertility bulletin boards and the good thing about such online support groups is - you can remain anonymous and at the same time express your fears, concerns, anger, happiness and what not! This helps to relieve you from your stress when undergoing an IVF cycle. So be expressive to come out of the IVF blues!

6)   Do your duty and also learn to accept the fruits of it!

Bhagavad Gita, the ancient Hindu scripture states that "Do your duty and let not the fruits of action be your motive’’. Can anyone even function without expecting the fruits of their action? When you get hungry you eat – you expect the hunger to be quenched!  Likewise, when you think of each and every action you perform in your life, there will be an expectation hidden behind it! We undergo an IVF cycle expecting that we will get pregnant and have our baby. Actually, ‘A BABY’ is the driving force for performing the action (IVF treatment!). So, what does the preaching of Bhagavad Gita mean? When you perform an action to the best of your ability then you should learn to accept both the success and failure as if they are one and the same. If we IVF patients keep this in mind throughout our journey we will learn to accept the positive and negative result without losing our sanity! The decision to go through an IVF treatment is in our hand, but not the outcome.  When the outcome of an action is not in our hand, it is not wise to worry and get depressed about it. Easier said than done but it is the wisest advice available to build our emotional resiliency! Below is an excerpt from a book called The Genius of Dhyaneshwar! If you are interested to know more about this book please see follow this link:

For some reason if you fail
There is no reason for you to wail
If you succeed
Well and good
If you fail
Also good
Whatever you do
Give it to ‘that’
Done your bit
That is what

7)   Shed tears for other’s suffering

Be empathetic! Empathy is the most beautiful of all human emotions. It makes you feel good about yourself because it brings people closer to you. The more connected you are with people, the better you will feel during the IVF journey. Empathy will also help you to see this world in a broader perspective. Infertility is hard but there are harder sufferings in this world, and lots of people go through such struggles everyday. When your mind is totally occupied with thoughts like ‘I am suffering, I am the victim, and I am unfortunate’, you get lost in your personal miseries which then get magnified, because you are focussing only on them. You fail to notice what other people are going through. Forget your pain for some time and take time to experience other’s pain. This will open a new world in front of you. You will realize that you are several times more fortunate than many other people in this world. Your IVF journey will appear lot easier and the pain of failure will become much more bearable. As a result you will bounce back to normal quicker and much stronger!

8)   Consider yourself as a survivor of infertility rather than a victim

I went through a miscarriage after getting success in my 2nd IVF cycle; it was the most painful period of my life. Miscarriage after infertility can be very devastating. When I was depressed I always thought ‘why me?’ ‘When most women get pregnant naturally and have children, why do I have to go through so many struggles to experience this joy in my life?’ When I thought all my struggles had finally come to an end, miscarriage came as another big blow to my mental integrity. I felt I am a victim of fate and infertility. I considered myself as a very unfortunate person who is cursed to suffer. But when I came out of the trauma, the entire view of my miscarriage experience changed. I even felt proud that I have survived it. I felt very thankful for each and every blessing in my life. The aftermath of pain is very positive; it allowed me to perceive and receive even the simplest joy with so much gratitude. I realised nothing has gone out of my control - there is always a plan B if plan A doesn’t work! It is OK to grieve for a short period of time but if you always see yourself as a victim of a traumatic event you lose the most essential ingredient in life – HOPE! When your IVF cycle fails, consider yourself as a survivor of that trauma rather than a victim. This will give you enough strength and hope to explore further options.

Wednesday, August 22, 2012

Infertility, IVF and Indian society!

India is a male-dominated, child (male child!)-obsessed society. When a couple faces infertility problem, 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. According to them their daughter-in-laws are the sole reason for not begetting a child. The position of infertile women in Indian society is highly pathetic. They are generally viewed as pitiable and unfortunate women; as they are missing motherhood. Indian society is so 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 other positive assets of her are considered useless or valueless. In certain parts of India infertile women are thought to be possessed by evil spirits! There are people who do not invite infertile women for auspicious functions. Because of the social stigma associated with infertility, even educated women consider their infertility as shameful! They think that their body is defective and they believe that because of their past or present life sins they are cursed to suffer. They also believe that infertility is a punishment from God. As a result, infertile women are very reluctant to talk to anyone about their problem and sufferings. This in turn creates enormous mental struggle and depression. No one dares to ask Indian men why he is not able to have children but childless Indian women faces ridicule from all walks of the society. In such an environment what should a husband do to protect his wife’s emotional well-being?

The in-laws pose a major threat to an infertile woman’s emotional safety. Although it is not always true, in 99% of cases infertile women suffer in 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 rare 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 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 you have problems with your fertility and not your wife! Is it that difficult to do this?  If they understand that their son is the one who is having a problem then they tend to treat their daughter-in-law well (at least they do not hurt her!). This creates a peaceful environment at home both for your wife and also for you!

In our case, my DH is very kind and considerate enough to lie to his parents that the problem is with him. It became very difficult for me when my mother-in-law started questioning each and every week whether we are taking treatment, whether I am taking medicines properly, when was my last menstrual cycle, so on and so forth. I started to dread the telephone conversation with her and became very restless when week-ends come. So my DH told them that, he is the one who is having problem with his fertility. As a result of this many 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 and cry for the same. I no longer make my DH’s life miserable by saying that your mom asked 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. Below is an example of this:

Recently I received an e-mail from a couple who is awaiting the birth of their first child formed via IVF. They are very happy but at the same time anxious about whether they should tell their parents and the society, the science behind the creation of their bundle of joy. 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 Vicky Donor movie!). In this situation is it even wise to tell them that we conceived our child via IVF?’

 In India, IVF is still very much a taboo subject. Many people strongly hold on to their own fallacies and it is very hard to explain them the scientific facts behind IVF! In this situation, what will happen if the elders in the family think that the child doesn’t carry their family genes? How will the society treat the child if they see the child as multi-parental creation? Won’t it be a danger to the child’s emotional safety? The man particularly wanted to know whether it is OK to tell his parents about the complex IVF procedure. 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 the baby as one among them if they have the notion that IVF technique is for couples who use donor eggs or sperms. She is worried about her child’s emotional safety. It is very important for a husband to respect her feelings. Even though they are his parents it is not necessary that he tells them each and every happening in his life. Elders, because of the society in which they grew-up, have a very conservative mind set. It is very hard to change them and make them see the fact. 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 and 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/her formation at an appropriate age. It is mandatory that the baby knows about his/her creation via the parents and not through someone else who is ignorant about the process and can distort the details! This can lead to enormous emotional suffering for the child.

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

Thursday, August 16, 2012

The DHEA and AMH paradox

I have seen many women who ask the following question in infertility bulletin boards – I have low AMH levels, what can I do to increase it? Since women with poor ovarian reserve have low AMH level they believe that increasing their AMH level might solve the problem of poor ovarian reserve. But this notion is not correct! Increasing your AMH level cannot increase your ovarian reserve. If it is that easy, the pharmaceutical companies will be producing and selling AMH at an enormous price. You just have to buy it and inject inside your body : ) On the other hand, can increasing ones ovarian reserve lead to an increase in AMH level? Theoretically the answer is YES, but, until now there are no proven ways to increase the ovarian reserve of women.

What is AMH and how is it connected to ovarian reserve testing? The AMH story is not yet clearly dissected out scientifically. But there are some well-known facts about AMH which I will try to summarize below: 

Anti-Müllerian harmone is secreted by the granulosa cells of primary, pre-antral and small antral follicles. Antral follicles are considered to be the primary source of circulating AMH as they contain a large amount of granulosa cells. AMH is preferentially and constantly secreted by the small  (4-6 mm) rather than large follicles (8mm and above). AMH expression disappears in follicle of increasing size and is almost lost in follicles larger than 8 mm (PMID:16388003) Small antral follicles are usually 4-8 mm in diameter and can be seen, measured and counted via vaginal ultrasound. Women with high ovarian reserve will have more AFC in their ovaries. Since these small antral follicles secrete the maximum amount of AMH into the blood stream, AMH testing is used as an indirect measure of our ovarian reserve. AMH can be measured at any time during the menstrual cycle due to insignificant intra-cycle variability which is a great advantage in clinical practice. Whenever you do an AMH test to measure ovarian reserve please insist that you should know your AFC counts too! AMH level is measured in blood and although this test is considered to be pretty accurate there can be chances of laboratory errors, so it is always wise to compare your blood AMH levels with your AFC count! A recent report suggested that, the method used to store the blood samples for AMH measurement can make a difference in the results obtained and they have suggested that caution should be exercised in the interpretation of AMH levels in the clinical setting (PMID:22777530).

High AFC count can contribute to increased AMH level but increasing the AMH level cannot increase our AFC count or ovarian reserve. Actually, increasing our AMH level via artificial means (for example injecting AMH in your body or using substances that can actually increase the AMH expression in your granulosa cells) can lower AFCs. Addition of AMH to neonatal ovaries invitro inhibited primordial follicle recruitment and thusby decreased the AFC count. When primordial follicle recruitment is inhibited there is less depletion of follicles from the ovaries – theoretically this means increasing the AMH level in our body artificially can preserve ovarian reserve. Slower recruitment of primordial folicles = longer reproductive period. Ovarian reserve preserving can become a therapeutic option for women, who wants to post-pone child-bearing and use of AMH for such purposes will be explored in the future.

What will happen if you decrease AMH level (decrease AMH signalling) artificially? Mice lacking AMH gene answers this question. AMH null mice showed increased rate of follicle recruitment from primordial follicle pool. This led to the premature exhaustion of their ovarian reserve. Since AMH null mice have low levels of FSH, and yet increased number of growing follicles, it has been hypothesized that follicles are more sensitive to FSH in absence of AMH. Does it mean women with dysfunctional AMH gene due to certain mutations can deplete their ovarian reserve sooner? I found a single study which talks about AMH and AMHRII polymorphisms in normo-estrogenic and normo-ovulatory women with unexplained infertility ( (PMID:19539910).

Do women with low AMH have poor egg quality too? AMH is not an indicator of egg quality but of egg quantity. But women with poor egg quality can have low AMH (aged women will have poor egg quality and they also have less ovarian reserve!). Egg quantity and quality are two different processes which are mutually exclusive. So younger women, with low AMH level doesn’t necessarily have to have bad egg quality. Women with high AMH level can also have poor egg quality too. As an example, consider women with PCOD, they have high level of circulating AMH (because of high AFCs) but not necessarily good quality eggs.

Now the DHEA and AMH story – DHEA has helped some women with diminished ovarian reserve to produce more eggs during IVF. I have used DHEA for 9 months and my AFC count increased significantly. I naturally expected my AMH levels to go up too. But my AMH level dropped from 3.5-4.7 ng/ml (different time point measurements; spanning over a period of one year) to 1.8 ng/ml (measured twice, the initial measurement is 1.8 ng/ml and the next in a different lab which showed an AMH level of 1.9 ng/ml). Yet I got 24 eggs out of that cycle. The mechanism by which DHEA increases egg yield is not yet known. Can DHEA decrease AMH production in granulosa cells and thus by increases the recruitment of follicles from primordial follicle pool? This can't be true because PCOD women have high DHEA levels and also have very high AMH and high AFC. There are studies which show that DHEA increased AMH levels in women who took it (PMID:20638339). Is anyone out there who took DHEA and had higher egg yields? Did your AMH level change (increase or decrease) after taking DHEA? I would be happy to hear from you. I did a brief search in google and found many women reporting that their AMH leve became worser after taking DHEA !!!

Points to remember

1)   AMH is an indicator of ovarian reserve. When doing test for ovarian reserve it is wise to interpret AMH levels along with our AFC count.
2)  Low AMH levels don’t necessarily mean you have poor egg quality too. If you are young womenwith low AMH and if your ovaries can produce some eggs in response to gonadotrophin stimulation, your chance of conceiving a baby via IVF is still bright.
3)  Artificially increasing your AMH level will not increase your ovarian reserve or egg quality.

Wednesday, August 8, 2012

From 3 eggs at the age of 29 to 24 eggs at the age of 33!

How many eggs will I lay, sorry : ) how many eggs will they retrieve from me is the most important question in my mind during all my IVF attempts.  I have thought about my eggs more than anything else after my marriage. When we started our journey to conceive; I would tell my DH, ‘I think today my egg will be released, I have all the signs of ovulation’. I will be saying it very seriously and with a determination to catch it and make a baby out of it : ) (poor DH!) He will respond with the most innocent face ‘Manju, why can’t you make an omelet out of that for me’ : ) I will break into laughter. These kinds of “eggie talks” have become a part of our life after starting TTC.

The most important question which lingers in the mind of many women who are undergoing IVF is - why didn’t I get more eggs during my IVF cycle? When I started my IVF journey I was young. I saw so many young women (even some 35+ women!) in infertility boards reporting that they got more than 20 eggs. I am so confident of my ovaries : ) I thought, I am only 29 and my problem is just fallopian tubes; I am a great candidate for IVF and for sure I will produce so many good quality eggs and will be successful very soon. I have read that young women with fallopian tube blockage are the best candidates for IVF and they get success very easily. With so much confidence in mind I started my first IVF cyle. My RE in Germany was too cautious. He started my ovarian stimulation regime with 112.5 iu of Gonal F! Each successive ultrasound for monitoring follicle development shrivelled up my hopes of getting large amount of eggs. After a week or so of stimulation my RE increased the dosage to 150 iu of Gonal F. There were only very few follicles developing and I was really worried. I was not prepared for such an outcome. When I asked my RE why am I responding so poorly to stimulation; he replied very coldly ‘it's your ovaries; how will I know?’(Great answer!).  When I didn’t get a proper reply from him I searched the internet for answers. I will always be grateful to the women in infertility boards who patiently answered all my questions and put my mind at ease.  I ended up with only 3 eggs during that cycle. Out of the three eggs only one fertilized via IVF and that lone embryo was only 4 cells on day 3 of fertilization. I felt so happy to see that single embryo – my first embryo sighting experience!

The next four cycles in Germany lead to the collection of 9, 5, 8 and 5 eggs respectively. I thought that the second IVF cycle was a bust too! Out of the 9 eggs retrieved 7 were mature. Since only one out of three eggs was fertilized during my 1st IVF, my RE suggested that we should try ICSI. We agreed. But I could not accept the fact that my eggs and his sperms cannot even make love in a petridish without help :). I had a notion that IVF is more natural than ICSI. So I came up with an idea. I told the embryologist ‘please keep 3 eggs for normal fertilization (IVF) and do ICSI on the other 4 eggs’. He looked at me strangely and asked ‘do you think that will make a difference?’ I had no real answer but just nodded my head affirmatively. The day after egg retrieval I have to call the embryology lab to get the fertilization report. To call the embryologist and to take the fertilization report is the scariest part! The thought that there were only few eggs and the possibility of complete fertilization failure or any other unfortunate happening haunted me all the time. My heart used to race during those few minute conversations with the embryologist. The day after my egg collection I called the embryology lab for getting my fertilization report. The embryologist said ‘only two of your ICSIed eggs fertilized and there was no fertilization in the eggs which were kept for IVF’. I cried! I could not believe that I have only 2 embryos from 7 eggs. I kept on blaming myself for opting to use 3 eggs for normal fertilization. After the initial crying spell, I was happy that I had at least those two embryos. This is the first lesson my IVF journey taught me – always try to look at the positive side of the story and be happy! When I talked to my doctor he said, ‘come on Friday (which is actually day 2 of fertilization) we will transfer those two embryos’. I told my husband ‘anyhow they cannot select embryos after cleavage (in Germany, embryo selection after cleavage is prohibited by law!) that is why God has selected himself and gave us only two embryos.

I am so happy the day I saw those two perfect four celled embryos! They looked 100% perfect. The embryologist was beaming with pride. He said that my embies looked picture perfect. My hope was high again after the initial tragedy. After transfer I rested for 5 minutes and left the clinic. You know what? One of those 4 celled embryo was actually a fighter – it implanted in my uterus! I always think of that little one. Even though it didn’t become a full-fledged baby (I lost my precious baby at around 7- 8 weeks); that embryo is the one which keeps my hopes high even after undergoing 6 further futile embryo transfer attempts!

I think I have deviated a lot from the original topic. Now back to the topic - why some women get fewer eggs and some more?

As the women age their ovarian reserve gets depleted. Depletion of follicular reserve begins during foetal life and continues throughout a woman’s life.  At around 20 weeks of gestation a female foetus carries 7 million follicles and during menopause (approx. 51 years later) it is reduced to a few hundred. So younger women are expected to produce more eggs and older women tend to produce fewer eggs. PCOD otherwise called as Stein-Leventhal syndrome is a collection of metabolic derangements. Ovaries of women with PCOD produce excess androgen (male hormone) and they might also have more insulin circulating in their body. Women with PCOD have very high antral follicle count (AFC) and hence they produce lots of eggs when stimulated with gonadotrophins. Women, who undergo premature menopause at a younger age, will have very less AFC count, increased FSH and low AMH. They produce less number of eggs too!

Is poor ovarian reserve an indicator of poor egg quality ? The answer is yes as well as a no! When women get older, their ovarian reserve decreases as well as their egg quality. But younger woman with less ovarian reserve can produce good quality eggs. AMH, FSH and AFC are all indicators of ovarian reserve. If a younger woman has higher FSH, low AMH and AFC her chance of producing good quality eggs and embryos is as high as her similar age counterparts. That is why young women with premature menopause are more successful in getting pregnant via IVF when compared to older woman who have low FSH and high AMH. The message here is age of the women is the best indicator of egg quality and not their AMH or FSH.

What helped me to get 24 eggs in my 6th IVF cycle?

I made two important changes during my 6th IVF cycle. I was advised to take DHEA (75 mg) by Dr.Malpani.  I started to take it regularly. I took it for 9 long months. The good thing is, I never had any bad side-effects. On taking DHEA I started to ovulate regularly. I had lots of fertile quality mucus during my ovulation time. I also had ovulation pain which is very prominent. People say DHEA can give them bad hair days. I never had problem with my hair. I should say my hair fall was reduced when taking DHEA.  Please visit CHR (Center for Human Reproduction) website for further details. DHEA was found to increase oocyte production (PMID: 16169414). The mechanism behind it is not so clear. DHEA is used in mice to induce PCOS phenotype in previously normal ovaries (PMID: 16514202). DHEA supplementation was also shown to decrease embryo aneuploidy (genetic defects) (PMID: 21067609)

The next change I made was to stop taking metformin (1500mg). I was on metformin from the age of 26 years. I was diagnosed as having PCOD using ultrasound pictures of my ovaries. My ovaries had a characteristic pearl-like structure. I also have insulin resistance. When I started taking metformin I started to ovulate regularly. I lost weight and felt a lot better. Metformin is found to have anti-cancer and anti-aging properties. It is also touted to prevent or postpone diabetes in PCOD women who are prone to it. So from the age of 26 I was on metformin. I never had a second thought about it. I never thought it can reduce my AFC count and can lead to less egg yield during my IVF cycles. Metformin can reduce your AFC count. A scientific study showed that one week of low-dose metformin therapy can bring down your AFC count (PMID: 17224152).  A recent publication which studied IVF cycles among PCOD patients with and without metformin administration showed that the stimulation length and gonadotropin doses were significantly higher in metformin group than in control group.  The number of dominant follicles on the day of ovarian maturation triggering and peak oestradiol levels was significantly lower in metformin group than in control group (PMID: 21770836).

I believe these two changes (taking 75 mg DHEA and stopping metformin) made a big difference in the egg yield during my 6th IVF cycle. To be exact, I had suppressed my bodies PCOD tendency using metformin. So by stopping metformin and starting DHEA (which is a PCOD mimetic) I was successful to coax my ovaries to produce more follicles and hence more eggs. After 9 months of DHEA intake and stopping metformin my AFC count increased form 7-9 to 18-20!

Moral of this story is .......

If you are a woman who is having diminished ovarian reserve please try DHEA. It worked for many, might be it works for you too. Metformin is a wonderful drug. It really helps woman with PCOD and insulin resistance. If you are young, have excellent FSH and AMH value, have extremely high AFC count, if you are overweight – metformin is for you. It can reduce your insulin levels and thus can help with improving egg quality. It can prevent OHSS by reducing AFC count. If you have extremely high AFC you are prone to develop several follicles in response to gonadotrophin stimulation. More the number of growing follicles, higher will be your estrogen levels. A higher estrogen level is a risk factor for developing OHSS. But if your are a woman who has less AFC count, higher FSH, lower AMH and normal BMI metformin will not help you. I do not think it can improve egg quality in such woman and it can even lead to cycle cancellations by reducing your ovaries response to gonadotrophins! 

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!
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