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National Infertility Awareness Week – Share, Be There, Be Aware

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It sure was a long time since I had the time and the energy to sit down and compose a new blog post here. A lot of things have happened since my last post in November but most of them are positive so I won’t complain. This week is NIAW – National Infertility Awareness Week and I wanted to write something here during this week. Because I think it is important with increased awareness. Actually, I think it was time for increased awareness already yesterday. Awareness. Of. People. Who. Struggle. Trying. To. Overcome. Their. Infertility. Why? Well, there are many reasons, but I think it is best described by the fact that when you fight against infertility it means you are fighting both the present and the future. Or I should rather say, you fight FOR the present and the future. Not an easy battle, and you’ll need all the support you can get. Unfortunately, this is normally not very easy to find. Infertility often creates a vacuum around the couple who is trying so hard to build a family.

IMG_0646One of the things I find so heartbreaking with regards to Infertility is that people struggling on this very challenging journey, do not only have to fight their actual issues of trying to conceive, but also the stigma around infertility. Often people who find out about friends and/or family having problems to become parents, begin to not only view them differently but actually act in a let’s say “non-appropriate” way. Lots of times you will hear comments like “Cheer up, I am sure you will soon become pregnant. You know, I have another friend/colleague/cousin who tried for a long time and when she finally began taking yoga classes and stopped trying actively to conceive, she became pregnant in a heartbeat. It is all about not stressing. You should really try to relax, have more fun and not focus so much on the whole baby thing…” I know most of the time people just mean well. They are trying so hard to give you some kind of comfort. To help you look at it from the bright side. To infuse your tired, exhausted body and mind with energy boosting words so that you can bounce back to a cheery, happy and sparkling self. Or sometimes, they’re trying to avoid an embarrassing breakdown.

The other type of reaction is mainly just not to talk about it. At all. Not mentioning anything that could potentially open up the scary box of tears and frustration that most people on the infertility journey is dragging behind them like a heavy luggage. However, none of these reactions are helping. People who are fighting a difficult battle do not need cheerleading. At least not in this way. And they are certainly not in need of people who feel so uncomfortable around them that they tiptoe around and around to avoid the far too big elephant in the room. Silence can be golden, but some kind of silence is just so obvious it becomes deafening.

IMG_0596So how can you support? How can you help? How can you actually show your friend, your colleague, your cousin that you care and that they can confide in you if they would want to? Well, everyone is different, but I’d say that the best way to be supportive is to be natural. Not to put that extra layer of happy frosting on your face. There is no need for extra sparkles or botox-like smiles. Also, if you feel embarrassed and don’t know how to behave when you meet a friend who you know has been trying for quite some time to conceive, the same goes for you. Just act as natural as you can. Be there. Talk about small things in life. And big. If your friend needs or wants to talk about his or her infertility struggle, he or she will eventually do that. And when this happens, just listen. Without any cheering-on. Without painting the future in only potentially positive bright colors. But also without desperately trying to change the subject. It is ok to ask questions. If you do it in a sensitive way. But most of all, just be you. Listen. And be there.

This year NIAW is about #ListenUp. So do just that. Listen. To your body. To your partner. To your friend, your sister, your brother, your colleague, your aunt, your cousin, your team-mate. And maybe you have once fought this battle yourself. Then, please share. But again, in a sensitive and sensible way. We are all different with different experiences so  first it is better to listen more than talk. However, sharing in general, with your own friends and people you meet is something I hope more of us would do. Awareness can only increase if we talk more openly about this. Letting people know and understand that infertility is extremely hard and stressful, both emotionally and for the body. Often with the result that people rather close the door. To protect themselves. Or maybe they think they are protecting us? However, the more we share, the more people will be aware and eventually they won’t feel the urge to close the door. But maybe instead open it up. At least a little. To #ListenUp. So please, if you have have your own experience – SHARE. And if you want to support someone – BE THERE.

Share – Be There – Be Aware

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The complex art of being Thankful

img_8154Yesterday was Thanksgiving. This time of year we are all encouraged to think abut our lives and be thankful for everything we have. Maybe keep a diary with scribbled notes of things that we are thankful for. Small things that happened earlier today. Or yesterday. Or last week. Or maybe big things like myself who is now incredibly Thankful for my new job. Something I’ve been dreaming about for a long time. And that all of a sudden came true. In a time when I had almost given up. I am truly thankful for that. Or you might be thankful for having a good health. For having friends and family around you. For having a warm home and food on your table every day. There are thousands and thousands of things to be thankful for. Both big and small.

Version 2However, it is not always that easy. You go through different phases in your life when thankfulness does not come naturally. Even though you know, logically that you have a lot  to be thankful for, there is still something missing. A big piece of your life that is just not there. So even though your mind tells you that you are lucky in so many many many ways, you still struggle emotionally to truly feel that gratefulness. We all have different reasons. For some it could be the loss of someone they used to share their life with. A close relative or a very dear friend. For others this empty space was maybe caused by something completely different. A loss, not of a person, but of the feeling of belonging. Being part of something. A community. A place. A country. A culture.

img_0682-copyWhen struggling with infertility, this season can be particularly difficult. The. Holiday. Season. You know. ‘This the season to be jolly. Fallalalallalallallalaaah! Cozy warm commercials showing happy families in front of sparkling fireplaces indulging hot cocoa. Holiday Movies with couples in love throwing glittery snow balls at each other laughing.  You might watch these but instead of transfer you to that warm holiday spirit, they just remind you of everything you wish for but do not have at this moment. But worst of all, are the get-togethers. You meet family and friends. Gatherings. In the spirit of the Holiday. Thanksgiving with extended family. Holiday parties at work. Catch-up-before-going-away-drinks out with friends. Christmas or Hanukkah with your parents, grandparents and siblings. Or with your in-laws and all family on your spouse’s side. And of course. At such events. The questions so often are spilled out. Right there. In the open. Not because people are specifically rude. Or want to pry on your personal life. But because for some reason, other people’s family business seems to be everyone’s business in our culture. ‘Tis the season to be jolly. And what can be more joyful than chatting about someone’s kids-to-be…?

_mg_3542-copyYou know that these questions are not meant to be hurtful. But nevertheless they are. They sting. They make you cringe in your chair when you try to keep smiling, blink a little extra to keep your eyes from watering and try to hold your drink steady. Not shaking. You smile. And you tell a lie. Still smiling. And then try to move on to another subject. But it still hurts. And you have to excuse yourself and leave the table to take a deep breath in the bathroom. You look yourself in the mirror. Trying to desperately think of all things you are grateful for. Everything in your life that brings you joy, and happiness and love. But all you feel is that emptiness. You feel the loss. Not the loss of someone close to you who no longer are with you. Someone you knew all your life. But the loss of not have had the chance to meet this very special person yet. And what is even more terrifying than this feeling of loss, emptiness and grief is your fear. You are scared to death that this might actually never happen. Ever.

Then you clear your throat. Wash your hands. Splash a little cold water in your face. Carefully not to ruin your make up. You are back at the dinner table again. Or maybe now the rest of the family and guests have moved to another room. Maybe you just grab a glass and start mingle around. But of course, you of all people have to end up with your younger sister. Or your brother-in-law and his wife. Or your spouse’s cousin. Who very happily  and emotionally announces that they are expecting. Tears of joy in their eyes. Everyone cheering. A toast! Congratulations falling like glittery sprinkles around you. And there you are. Knocked down. Once. Again. Hit by first by your own fear, then by your envy and jealousy. And finally with guilt. For not feeling happy. At all. The fear and the guilt. Strong and intense feelings. Dark. Not the ones you’d want to wrap yourself in during the joyful Holiday Season. Or any season for that matter. But particularly not during the Holidays. However, there is little you can do. It really is extremely hard to wear the Thankful-Grateful-Joyful coat for the Holiday Season when all you can feel is what you are NOT Thankful for.

img_6692I have no specific advise for how to survive this season with a hole in your heart. I have no suggestions for how to find your lost Thankfulness. Or how to bury your fear or ignore your guilt. I think there might be as many ways as there are individuals out there. For me though, when that emptiness was threatening to swallow me, I tried to tackle it by just accepting that it was ok to feel the way I felt. That jealousy and guilt and other dark thoughts that roamed my mind were ok. As long as I did not hurt anyone deliberately. It helped some. The very best though, was communication. First, I usually talked with friends who knew what was going on in my life. Who could listen and support. Most of them were in a similar situation as me. My Ovulation Sisters. But I also talked to some other close friends.

Later, when I felt less vulnerable I even tried to talk to people around me. An advise I still think is one of the best, even though it can be extremely hard. Let them know that some questions are better not to ask. You tell them that people usually share things they are excited about, like if they are planning to grow their family. When time is right and you are ready, you’ll tell them. All from your heart. So they do not need to ask. They do not have to come to you. You will come to them. And when you share. They’ll listen. They can get excited if you are, and if your are not, they’d better be supportive. Let them know. Hopefully they will think of this not only when they are around you, but also when they are around others. Who knows, you may realize that you are not the only one in your family or among your friends who has not been sharing. Communication is the key. To almost everything. Even to the (sometimes winding) path to Thankfulness.

A greater chance for veterans to become parents

Sorry for the long paus here on the blog. It has just been a lot lately. In one month I have been offered a job I applied for in the summer. I then had to find a daycare for my youngest and a little less than three weeks ago I started to work. So far I absolutely love it, but my new life also means I have much less time for this blog. Full days at work, a bit of a commute and than trying to have some family time in the evening, leaves me with almost no “left-over-hours” in front of the computer. I do hope I will have some more time later, when I have established more of a routine.

miltary-baby

But enough of me and my lack of blog hours, and let’s see what has happened since my last post. Today, I want to share the great news that the MilCon-VA Appropriations bill has finally passed in both House and Senate. The passing of this bill has been a work in progress for quite some time now, but three days ago it finally became reality. A lot thanks to all grassroots advocates who have fought for this change for the last four years, as well as organisations such as The National Infertility Association (RESOLVE), the American Society for Reproductive Medicine, numerous Veterans’ groups and of course US senator Patty Murray who together with committed members of Congress have worked hard for this to finally happen.

military-family-1What this means is that the Department of Veterans Affairs (VA) will cover the costs of reproductive services (including IVF treatment) and adoption assistance services for veterans who have suffered service-related injuries resulting in infertility. Earlier VA covered only less advanced procedures such as IUI (intrauterine insemination) and fertility counseling, and veterans were only covered if they were still in active duty, and not if they had been discharged before diagnosis and treatment. The majority of veterans with reproductive injuries however, are not diagnosed until long after they come back from combat and by that time they are already discharged. Now, with the new bill, veterans will be covered even if they no longer are in active duty when they discover that they will need support to become parents.

military-momSome people might ask why fertility treatments and adoption of all things are so important for veterans? One of the reasons is that many veterans suffer from injuries caused by improvised explosive devices (IEDs) which frequently damage testicles’ sperm production and the fallopian tubes, and for these veterans IVF treatment or adoption would be the best or the only opportunity to become parents. And now, with the passing of the MilCon bill women and men who suffered from reproductive injures while serving their country will have a (better) chance to start a family. To all of them, and to all of you who have fought and worked hard for making this happen, I want to say Congratulations!

Pictures in this post are borrowed from:

http://rollingout.com/2014/11/12/military-babies-celebrate-veterans-day/

http://health.usnews.com/health-news/health-wellness/articles/2016-01-28/military-fertility-its-complicated

A new life and why it might not make you Over-the-Top-Happy

img_7051When I started this blog, I wanted to write about infertility, fertility and reproductive medicine. Anything with a connection to these topics. Personal stories, research studies, clinical findings, new technology, medical information, new breakthroughs, things that makes me happy but also things that makes me sad. Or angry. Or confused. I guess more or less everything that makes me care. Well, today’s post will be about something that now makes me extremely happy, but was not as simple while we were trying to conceive. Recently we found out that my sister in law is having a baby. A few days ago they revealed it is a little boy. We are of course super happy for them. And for us. Who will now have another new little person entering the family. They already have a son who will now become a Big Brother. A big change for him and the rest of the family. But a positive change. An addition. And today it makes me smile. Wide. With all my heart.

Version 2However, when I and my husband were trying to conceive, news like this was always difficult. Complicated. Never easy. Never just plain rosy happiness. My feelings were always dual. News that your close friend(s) and/or members of your family was having a baby was never just simple happy news. Of course you WERE happy for them. Truly and honestly happy. But with that happiness there were always other feelings attached. Like jealousy. And worry. And stress. And sadness. And anger. And frustration. You were jealous of their happiness. And worried as well as stressed at the thought that you might never experience that sort of happiness yourself. You were sad and angry that some people seemed to become pregnant just by looking at each other, while you were trying everything in your power and still was traveling in the darkness. And all these feelings mixed together created the darkest form of frustration. So happiness for other people’s pregnancies was always filled with pain to. And on top of this was guilt. At least me, I always felt guilty for having these dual feelings. For not “rising above” and be just plain and simply happy. And the guilt was sometimes suffocating. I felt as a bad friend. Like I did not earn my friends’ friendship anymore. All because of how I felt.

pixar-inside-out-trailer_5It was hard. In particular when the “Happy Baby News” came from friends who had been struggling together with me on the harsh infertility road. Because, when you have been crying together. Supporting each other through the darkest hours. Leaned on each other. Laughed at each others really dark and twisted jokes about a situation you are both sharing. And then the balance shifts. One of you are finally seeing the light. All of a sudden, she has a chartered helicopter that comes and picks her up from the deep, black hole you both have been in together for the last year(s). While you are doomed to stay. In the darkness. Of course, you do feel truly happy for your friend. You wave good bye with a smile on your face. Tears of joy in your eyes. Wishing her the best on the new journey. Away from the dark hole. But as soon as the helicopter blades has disappeared and you no longer hear the the swishing sound of the blades. Your happiness for your friend will change color from rose gold to a mish-mash of grey and chaotic colors. The hole will all of a sudden feel extremely empty. Lonely. And all those non-happy-feelings will start to take over. More and more. Until you can hardly feel any happiness or joy at all for your friend who just was rescued from your hole.

img_6953This is not a choice. It just happens. As a result of your desire to become a parent but without getting any closer. No matter how hard you try. No one chooses to struggle on their way to parenthood. No one. You do not choose to have these mixed feelings. But. It. Happens. To many people. In that situation. So how can you make this easier? Is it even possible? Well, everyone is different. We all have our own worries. Our own grief. Our own stress. Our own hope. Our own dreams. And our own way to cope with all this. So I do not think there is a standardized patented solution. For me, it also varied. Over time. Some things worked during some periods but were not at all helpful at other times. Depending on many different factors.

In retrospect, I can see some behavioral patterns and there are some things I would like to share. Some things to try when you feel overwhelmed by guilt or other negative feelings after you have received “Happy Baby News” from friends or family close to you:

  • If you know them well, be open with how you feel. Let them know you are happy for them but that you might not be able to share their happiness all the way.
  • Take a break. Sometimes this means a break from fertility treatment and/or chasing your ovulation days. Sometimes this means taking a break from people who are pregnant, or in a happy baby bubble. Sometimes it just means taking time for yourself and try to take care of yourself without thinking of if this will score you any bonus points in the fertility book.
  • Forgive yourself. Always always forgive yourself. For your guilt. For your “not-all-the-way-to-the-top-happiness”. For the jealousy. For your dark thoughts.
  • Allow yourself to be okay with carrying all these feelings. Accept them. But fight hard against letting them be in charge all the time. Do not let them take over completely.

I think that one of the hardest parts when you are trying desperately to conceive, is to understand and accept that every pregnancy that is not your own, means that you are facing a form of grief. If you have experienced any miscarriage(s), you may feel the loss of your baby/babies every time you are reminded of someone else’s Baby Happiness. And even if you have never been pregnant, every pregnancy around you will remind you of that it is not you who carry a new life in your womb. And that is a loss in itself. For you.

 

The BPA-substitute BPS was found to affect fertility negatively

c-elegansIn a recent study by Chen et al, published in PLOS Genetics, the chemical Bisphenol-S (BPS) which is an increasingly common replacement for Bisphenol-A (BPA) in many plastic products, have been found to be harmful to the reproductive system. BPA has been used to make certain plastics and resins since the 1960s and it was detected in polycarbonate plastics. These type of plastics are often used in containers for food storage and beverages, such as water bottles and also in a lot of products for children and babies like sippy cups, nursing bottles, plates and bowls. BPA has also been detected in epoxy resins which are used to coat the inside of metal products such as, food cans bottle tops and also in water supply lines.

bpa-640x647Concern against BPA was raised due to its estrogen mimicking, hormone-like properties. The primary source of exposure for most people is through the diet by leaking into food from protective internal epoxy resin coatings of canned foods and also from consumer products such as plastic (polycarbonate) tableware, water bottles, baby bottles and food storage containers. It has been shown that the temperature of the plasticware is important for how much BPA that is leaking into the food and therefore one advise is to not microwave polycarbonate plastic food containers.

Due to these concerns regarding BPA, many countries banned BPA in several products, like baby bottles or food containers for children under the age of 3. However, several of the compounds that substituted BPA such as BPS, share a high degree of structural similarity to BPA, suggesting that these substitutes may interact and disrupt similar reproductive and developmental pathways. BPS can now be found in “BPA free products” and because BPA and BPS have similar physical properties there is an increased interest in finding out if BPS could have similar effects on human health as BPA?

journal-pgen-1006223-g001Chen et al., working at UCLA raised the question whether BPS could have any harmful effects on reproduction similar to BPA’s. In this study,  C. elegans which is a roundworm (nematode), a model organism commonly used for genetic and developmental studies, were exposed to different concentrations of BPA and BPS that approximated the levels of BPA/BPS found in humans. The worms were followed through the duration of their reproductive periods and their fertility was measured. The study show that worms exposed to either BPA or BPS, or a combination of the two, had decreased fertility. The researchers found that BPS caused severe reproductive defects including embryonic lethality. In addition, it was also shown that BPS affected fertility negatively in lower doses than BPA, suggesting that BPS might be even more damaging to the reproductive system than BPA.

It was indicated that some of these effects were partly achieved via mechanisms distinct from BPA which may raise new concerns about the safety of BPA-subsitutes as well as combinations of BPA and the alternatives. Of course, one can always question whether these results in worm are relevant for us humans, but biologically we share many of the genes and pathways that are important for the reproductive processes, and this study showed that several of these processes were damaged by BPS. Therefore there is a great need for comprehensive testing of BPA-substitutes in particular and coordinated safety assessments of multiple substitutes in general, before we use these chemicals as replacements of known harmful compounds.

 

The pictures in this blog post was borrowed from:

model organism.wordpress.com

essentialwellnessmedicine.com

Fig 1. from Chen et al, PLOS Genetics

 

 

 

IVF treatment is not associated with an increased long-term risk of breast cancer

When women undergo IVF (in vitro fertilization) treatment they will have to boost their body with extra hormones such as estrogen and progesteron, hormones that have been implicated in a higher breast cancer risk. Strict regulation resulting in increased as well as decreased levels of these and other hormones during an IVF cycle is required in order for the woman to stimulate her ovaries to produce as many (good quality) eggs as possible and then to create a receptive uterine environment for the future fertilized embryos to attach and grow. Due to the elevated levels (5-10 times the normal) of sex hormones during IVF treatment, there have been raised concerns that this could lead to an increased risk for these women to develop breast cancer.

images-4Recently however, a large study published in JAMA showed that women who underwent IVF treatment were not more likely to be diagnosed with breast cancer compared to the general population. Furthermore, the study examined women who underwent different types of infertility treatments, not only IVF treatments and it showed that there was no increased breast cancer risk in the IVF treated women compared to women who were treated for infertility without undergoing IVF. This comparison is important since women who suffer from infertility may be more prone to certain cancers due to the hormonal imbalances which may cause the infertility in the first place. Therefore this study is considered a more accurate way of assessing the potential impact on IVF treatments and cancer risk than studies where women undergoing IVF have simply been compared to the general population.

This  study was performed in the Netherlands where 25,000 women were followed for a median period of 21 years. 19,000 began IVF treatment (1983-1995) and 6,000 underwent other infertility treatments (1980-1995). The median age of follow-up was 54 for the IVF group and 55 for the other group. Moreover, the researchers took into account different factors linked to higher risk of cancer, including the number of IVF cycles each women underwent, her overall number of births and her age at the time of the birth of her first child.

The researchers found 839 cases of invasive breast cancer and 109 cases of in situ breast cancer in the >25,000 women involved in the study. The risk did not differ by type of fertility drugs. They concluded that the breast cancer risk for the IVF-treated women was not significantly different from the group who underwent other fertility treatments, nor from the general population at 20 years or more after treatment.

Surprisingly, it was shown that women who underwent seven or more cycles of IVF had a lower risk of developing cancer than women who underwent one to two cycles. Furthermore, breast cancer risk was significantly lower for women who responded poorly to ovarian stimulation in their first IVF cycle.

Side-Effects-of-Fertility-Drugs-for-Women-780x519This study confirms the results from two different studies both published in 2013: the first by Brinton et al where it was shown that IVF treatment did not increase the risk of developing breast and endometrial cancers, and the other, a meta-analysis of eight smaller studies, that showed that IVF treatment did not increase breast cancer risk overall. In another study by Brinton et al published in 2014 9,892 women were followed for 30 years after their infertility treatment where they were exposed to the fertility drug clomiphene and  gonadotropins (fertility medication containing follicle-stimulating hormone FSH, alone or in combination with luteinizing hormone, LH). Here, women who were exposed to either type of fertility drug were no more likely to develop breast cancer than those who did not use these drugs to stimulate ovulation. However an increased breast cancer risk was found in a small subset of women who were exposed to the highest doses of clomiphene (12 or more cycles of clomiphene treatment). In 2011, a reduction of both breast and cervical cancer risks was reported in women who underwent IVF treatment compared to women who did not undergo any fertility treatment, over a 8-year follow-up.

However, in spite of the positive results from these studies, one should not forget that the relationship between fertility treatments and increased cancer risk is complex and therefore difficult to investigate. Opposite results have been reported in previous studies, where it was shown that IVF treatment was linked to an elevated risk of developing breast cancer, and that it was linked to age. In 2008, researchers found a potential increase in breast cancer in women >40 years of age who underwent IVF treatment. This was a retrospective analysis of medical records and the researchers called the results “preliminary“. The same year another small study in Israel reported that women who started IVF treatment at the age of of >30 had an increased risk of developing breast cancer. In 2012 however, an Australian study with 21,000 participants showed that IVF treatment was associated with a higher risk to breast cancer only in younger women (24 years or younger) whereas no such link was found in women in their 30s or 40s.

artThese different studies with such variation in outcome, show that the question whether IVF treatment could be associated with an increased breast cancer risk is extremely complex and that we need more studies in order to solve the puzzle. Preferably large studies with a long-term follow up, similar to the recent Dutch study. Wendy Chen, a breast cancer specialist at Dana-Farber Cancer Institute says that “The ideal study would look at how long and in what doses women take fertility drugs, and whether those who took the highest doses for the longest period had the greatest rise in cancer occurrence. But that kind of data has not been consistently collected.” She also mentions that the vast majority of the studies where a connection between fertility treatments and a higher risk of cancer (mainly breast and ovarian) have been investigated, no such connection has been found. The exception are a few smaller studies (like the ones mentioned above), but here she claims that the methods used in these studies have been called into question by some researchers.

So far the results from most studies are encouraging and hopefully researchers will continue to investigate if and how there might be any connection(s) between fertility treatments and an increased cancer risk. In the Netherlands, additional 10,000 Dutch women who have undergone IVF treatment and 5,000 women who received other fertility treatments have already been recruited for a follow-up study.

 

The pictures are borrowed from:

http://www.saferadiotherapy.com/beneficial-bacteria-may-protect-breasts-cancer

http://onfertility.com/side-effects-of-fertility-drugs-for-women

http://www.medscape.com/resource/infertility

The hCG-Call, the Yes-or-No-Call or simply just The Call

Phone-iconExactly three years ago, on August 21st, 2013 I found out that I was pregnant. Almost two weeks after my embryo transfer. I remember waking up early that morning. A feverish feeling and an urge not to “cave in” for all the thoughts buzzing in my head. I had an appointment at our fertility clinic early that morning. To go and give a blood sample. My blood would then be sent away to a lab where the hCG levels were to be analyzed and then a nurse would call me. To let me know if we had succeeded or not. Oh yes, I knew the drill. I had done it before. More than once. More than twice. More then XXth times. But this time was the first time after an IVF. And I remember that felt different. As if more was at stake.

I walked over to the clinic. Luckily for me it was only a few blocks away from where we lived. I sat down. First in the waiting area and then in the small booth where the nurse asked me to roll up my sleeve and shortly after that I could watch my blood, dark red filling up the tube. On my way to work later I focused so hard on numbing myself. Actively trying to block all my thoughts. All my feelings. All my hope. Block. Block. Block.

With my memories from the previous attempt still fresh in my mind, in my heart. The call. The nurse. Her voice telling me that yes, I was pregnant. However, my hCG levels were not that great so we had to wait and see if the “Happy-Hormone“, the “Preggo-Hormone“, the “YES-Hormone” was going to increase or not. I remember her voice. Stable. Neutral but warm. Trying to keep my hopes up but without reassuring me anything. After we hung up I just sat there starring straight into my desktop screen. I remember wondering if people with such jobs do attend certain trainings in order to make their voices sound like that? Warmly neutral. With a thin slice of hope, yet a sharp edge of “prepare-yourself-for-the-worst“. I remember calling my husband. Letting him know that right there and then I was actually pregnant, but that there was this sharp edge in her voice and well the “Happy-Preggo-YES-Hormone” seemed to be all but convincing.

And later the sharp edge won the battle over the thin-sliced hope. My “Happy-Preggo-YES-Hormone” gave up. Together with my “never-to-be-baby“.

Happiness (1)But now, this time it was all new again. Even though the emotional road that had been leading up to this moment had been very much the same. Once again I sat in front of my desktop at work when my cell phone started to vibrate aggressively. I remember answering it. Pressing the green little circle on the screen. Lifting it to my ear. Hearing nothing but my own pulse. Fast fast. Then her voice again. This time with a slightly different tone. Her words. It looks very good. Congratulations. At this moment it could not look better. But you still have to come in later to give another blood sample so that we can follow up and confirm that your hCG is increasing. This is just routine though, so no need to worry. It all looks very good. Not at all like last time. Congratulations.

My numbness. Still heavy. But soon giving away for a feeling I still can not explain. Relief. Happiness. Worry. Already?! (what if it all goes wrong….?!?!?) Doubt. And more happiness. I remember calling my husband. I am pregnant. It worked. It looks good. Oh my God. I can not believe it. I am pregnant.

Three years ago. Today.

 

Pictures from: http://www.iconarchive.com/tag/phone and www.success.com/article/can-money-really-buy-happiness

 

Three years ago today, my “Maybe-Babies”entered my body – a story about my embryo transfer

FertilityExactly three years ago today, I went through my embryo transfer. Like all women on the IVF path, I was already fully prepared with hormones. Different shots. Different dosages. Each day for weeks. My body had turned in to a Prepare-for-Baby-Cocktail. My eggs had already been taken out and they had met my husband’s swim team resulting in a few “Maybe-Babies”. So my body was prepared. I was sitting in the waiting area with a few other women. Other couples. I was however, waiting alone since my busband had to stay home with our daughter. Living far from extended family often means you have to make decisions like this. When to find a babysitter and when not to. We had discussed this and we both thought it best for me to go alone. Actually, I did not mind at all waiting by myself. Mostly because I felt like I needed my mental space. Time. To. Focus. Trying to fight off all the worries and negative thoughts that were trying to fill my head again and again. Try not to feel scared. Not for the procedure itself, but for the future. The result. Or more the thought of a “non-result”. And also trying to find out any strategies about how to completely ignore my body for the coming two weeks before we would know if any of my “Maybe-Babies” would be strong enough to cling to my uterus and start the real journey with me. I needed time to gather myself. Think positive thoughts. Because yes, my body was fully prepared but my mind was still rushing.

hospital gown patternThere are a lot of things I do not remember from that day. Probably my mind has tried hard not to remember to much. Maybe because it was one of those days when you feel completely overwhelmed and you try to stay calm and cool, not letting your craziness inside take over. However, some small details are etched into my memory. Sharp and bright as a piece of shattered glass in the sunshine. I remember the touch of the gown after I changed from my normal regular clothes. Almost a bit cold against my bare skin. I remember watching the blue pattern on the white. Tiny dark blue flowers. I remember that I tried to peek at the other women in the waiting room without letting them notice. And I remember thinking that one or more of us will become a mother, but who? And deep deep inside I was holding my breath for being one of the lucky. I remember that we were taken three by three from the waiting room to another waiting area. Here one of us was called and then transported to the room where the procedure was going to take place. I remember being the last to go. And how nice woman number two was. We spoke. Just a little. Naturally, none of us was in the chatter box mood, but we shared a few words and it actually felt nice. Comforting in a strange kind of way. She told me this was her second attempt. And I told her it was my first. We wished each other Good Luck the moment she was entering the corridor outside to head for her procedure. I was alone. And it all felt very unreal. Surrealistic. And then. The door opened again. It was my turn to go and meet my “Maybe-Babies“.

IMG_5713When entering the room, I greeted the medical staff. Then the doctor and the embryologist entered and shook my hand. Before I leaned back they showed me a photo of my “Maybe-Babies“. They told me that I was lucky because more than four nice looking embryos had developed and then they went over the embryo transfer procedure once more before getting to work. I had gone through a number of IUIs so the catheter did not bother me at all. I could see the concentration in my doctors’s eyes when he watched the ultrasound while guiding the catheter. Then, it was done. The procedure was so quick. One second I stared at the fluorescent light bulb and the next I was wheeled out. To the recovering area. We had been told to stay horizontal for 30 minutes before checking out. So I lay there behind a beige curtain and then the thought hit me. Now I was actually pregnant. No matter the final outcome from this embryo transfer, but right there and then, that very day I was actually pregnant. At least with my very own definition of pregnancy. I knew the embryos were still swimming, trying to find their way through my fallopian tubes, and to some people pregnancy is not really a thing until the embryo(s) is/are implanted into the uterus. But I felt pregnant that very moment. My body was now incubating my “Maybe-Babies“. They were dividing, growing, developing while still struggling on their journey. Alive. Inside my body. At that very moment my body was holding on to my “Maybe-Babies” but something was also growing in my mind. Something bright red. It started as a bud but soon spread its petals like a flower. One of the most dreaded companies while walking the IVF path. HOPE. A companion to which you have developed this love-hate relationship. Because it can keep your spirits up like nobody else. But it also makes the fall so much harder, deeper. However, while resting in that hospital bed I realized that even with my attempts to actively keep hope away, I knew that at that very moment my body was invaded by dividing embryos and my mind with hope. So yes, I did indeed feel pregnant.

Pictures in this post are borrowed from:  https://edc2.healthtap.com and http://www.ebay.com

Ovarian age affect egg quality

It is well known that the age of a woman affects how fertile she is. We have all heard of declining fertility already when you reach the age of 3o, and an even more drastic drop at the age of 35. Around 40 we are considered old in terms of becoming mothers and if we are closer to 45, most women will not be able to conceive a child unless she chooses to receive eggs from a younger egg donor.

O'Keefe_03One of the reasons for the declining fertility is simply that the eggs go bad with time. One of the reasons for the sinking egg quality is based on genetics. Since a woman is born with all her eggs, they will eventually carry a higher frequency of errors (mutations) in their DNA which might lead to problems with her fertility. Recently, a study in mice by Briley et al. has shown that the actual ovarian tissue might play a role in the age-associated decline in egg quality. Here, it was shown that fibrosis was detected in ovarian tissue from reproductively “old” women (equivalent to women at the age of 38-45), meaning that the ovarian tissue was consistently scarred. In some of these reproductively “old” individuals up to 35% of the ovarian tissue was fibrotic. In addition, signs of chronic inflammation in the ovaries from the older individuals were detected, such as multinucleate macrophage giant cells (a type of immune cell) as well as gene expression of highly inflammatory proteins. The young individuals (equivalent to women in their early 20s) however, did not show any signs of fibrosis or inflammation.

F3.smallThese findings establish fibrosis as an early hallmark of the aging ovarian stroma, and the researchers speculate that this altered microenvironment may contribute to the age-associated decline in egg quality. This is the first study that shows how the ovarian environment ages and that this aging may affect the quality of the eggs it produces.

Hopefully this study of how the ovarian microenvironment changes with age, and other studies that might follow, could eventually lead to new treatments that preserve fertility by delaying ovarian aging. In addition, by improving our understanding of ovarian biology in general and ovarian fibrosis in particular these results may give new insight to PCOS (polycystic ovarian syndrome) where ovarian fibrosis and chronic low-grade inflammation are key features.

The study was published in Reproduction in August, 2016

 

Pictures in this post: Georgia O’Keeffe painting: http://www.gailsibley.com/2012/09/17/emily-carr-georgia-okeeffe-frida-kahlo-and-some-other-gals/

Last picture (Figure 3 from the study): shows highly ordered collagen fibers in mouse ovary)

 

 

Phendo – a tracker for women who suffers from endometriosis

The first time I heard of endometriosis  (en-doe-me-tree-O-sis) or “endo” was about seven years ago when a friend of mine told me that she suffered from extremely painful periods and that she had just been diagnosed with a disease called endometriosis. When she explained her pain and her other symptoms it was hard just to listen and even more difficult to try to understand how much she suffered. Every month.

In painEndometriosis affects about 1 in 10 women in the US and approximately 176 million women around the world. It is a disease that does not discriminate but affects women equally across all racial/ethnic and socioeconomic backgrounds. It affects girls and women during their most reproductive years (it can occur as early as from when a girl experiences her first period). About 30-40% of women who suffer from endometriosis also experience problems to conceive. Fortunately, effective treatments are available and some studies have shown that fertility may improve after undergoing excision surgery to treat endometriosis. For more information about endometriosis there is a short summary at the end of this blog post, or if you would like to read more you can click on the links at the bottom of this post.

Even though many women suffer from endometriosis the disease has not been well studied and little is known about the disease. Perhaps one of the reasons is that the symptoms are often linked to when a woman has her period, and up until recently it has been more or less socially unacceptable to talk about your period, even within some families or among friends. However, lately more women have began to try to stop all the shame and to overcome the social taboo that is still a part of menstruation and women’s periods are more discussed than ever before. It is still however, something most persons find it hard to talk about even with their close friends, but hopefully this is changing and I hope that a more open discussion around menstruation will lead to that diseases like endometriosis might become better known to everyone and eventually to more funding for research and better care/treatments for all women who suffers from this painful disease.

ElhadadNAt Columbia University on Upper West Side, Manhattan a group of scientists lead by principal investigator Noemie Elhadad, have been working on a research project called Citizen Endo where they try to collect health data from endometriosis patients in order to better understand the disease from the perspective of the patients themselves. This in order to bridge the gap between what endometriosis patients experience on a daily basis and what MDs know and think about the disease. The reason for this discrepancy between the doctors and the patients is the many ways endometriosis can present itself in patients.

One of the studies to better understand the disease and get descriptions of the disease that are directly linked to the patient experience, involves the development of Phendo, a period tracker for women who suffers from endometriosis. Phendo is a mobile app, created using Apple’s ResearchKit and CareKit, and the objective is to enable patients to track their experience of endometriosis. These data will then be used in research studies to identify symptoms and patient characteristics to study the different subtypes of the disease. Up to date, three subtypes of endometriosis have been categorized and now the Citizen Endo Team hope that the patient data collected with Phendo will shed a light over how each subtype affects symptoms and if there are more subtypes within each type. Elhadad explains that more information about the different types of endometriosis could help us understand who of these women may develop infertility and why some patients respond to treatments while others do not.

red_black_lines_patterns_247_2560x1440Another goal is to help women to determine and manage their own pain, see what triggers their pain and also how their symptoms have developed over time. With Phendo this information could be used to detect bigger trends in the data. This is not only important on an individual level but it would also help to find clusters of women where you can study pain management (like outcome(s) after intake of drug x). In the long-term, it would be possible to use the information from these pain management studies and maybe look for other traits in women within the same cluster that could explain the same type of pain and ultimately find out if there might be any way to intervene.

The name Phendo actually stands for “Phenotypic Endo“, which I think is a perfect name since the main goal with the app is to enable the users to track their own experience of the disease and also allow each woman to customize the settings to best suit her own pain and symptoms. Phendo is not yet on the market, but it will hopefully be available sometimes in the fall. The development of Phendo has been financed only by research funding received by the Citizen Endo Research Team at the Columbia Medical Center, and the team does not accept any commercial or pharmaceutical funding.

Some facts about Citizen Endo Research studies:

  • Self-Tracking Among Women With Endometriosis(completed): This was a series of focus groups with women officially diagnosed with endometriosis, conducted and completed in February 2016.
  • Phendo Self-Tracking Variables (June 2016-Present, open): This online survey is open to women officially diagnosed with endometriosis.
  • Designing Phendo (June 2016-Present, open): This card-sorting activity is open to women officially diagnosed with endometriosis. Online or face-to-face interviews that take place in Manhattan and last about one hour are required.
  • Phendo Prototype Testing (July 2016-Present, open): Involves in-person interviews in Manhattan lasting about one hour to assess a self-tracking app prototype; open to women officially diagnosed with endometriosis.

 

If you suffer from endometriosis and would like to help out with the Phendo development you could fill out their online survey:

The Citizen Endo team say that patient input will help them determine the specific items to include and prioritize in the software. They are looking for women who have been diagnosed with endometriosis through surgery and have experienced endometriosis-related symptoms in the last three months. In an online survey, they are interested in how to capture your menstrual history, your medical history, and your diet with respect to tracking of endometriosis. The online Citizen Endo Mobile App Survey 2 is anonymous, and should take less than 10 minutes to complete.

For more information about participating, visit:
http://citizenendo.org

 

What is Endometriosis? 

Endometriosis is an often painful disorder in which tissue that normally lines the inside of the uterus — the endometrium — grows outside the uterus on other parts of the body. Endometriosis most commonly attach to the female reproductive organs such as ovaries, fallopian tubes and the outside of the uterus but can also involve the space between the bladder uterus/vagina and rectum. It is less common found on the bladder, bowel, intestines and appendix or rectum. Rarely, endometrial tissue may spread beyond your pelvic region.

In endometriosis, changes in hormone levels lead to an inflammatory response around the areas of endometriosis and displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Over time, the cyclic inflammation can cause scar tissue and adhesions — abnormal tissue that binds organs together or other issues with anatomy where organs are moved out of place. Endometriosis can cause pain especially during your period, sometimes so bad it has been called “killer cramps” (they can not be treated with NSAIDS and they heavily affect the daily living).

 

Endometriosisnews.com

Endofound.org

endometriosisassn.org

medicinenet.com/endometriosis

 

 

Pictures from:

http://www.actionphysicaltherapy.com/blog/understanding-pelvic-floor-dysfunction/

http://endometriosisnews.com/2016/07/27/enhanced-understanding-of-endometriosis-from-patient-perspectives-via-phendo-mobile-app/

https://wallpaperscraft.com/download/red_black_lines_patterns_247/2560×1440