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Infertility, Sisterhood, Respect and Why I left IVF.ca

Posted by stellabelle , 21 September 2012 · 1,378 views

A couple of days ago I made the decision to leave IVF.ca, a site that I loved very much and was a source of strength and information for me for the last 6 years. I’m not leaving out of anger but I think it’s time to move on for me. Yesterday, a much loved member of the site messaged me to let me know that they were leaving as well – she felt alienated for completely different reasons than I did and I spent all night thinking about how sad that was for her and this site to lose her. I feel that before I leave there are some things that I wanted to share about my journey and my decision.

I started my infertility journey 8 years ago…..When we started trying I thought that I would get pregnant on first try! How naïve!!! I even planned months ahead on the date that I was going to conceive! On our Italian Riveria trip. Infertility was my biggest nightmare…..all I ever wanted was to be a mother……that was my life ambition to be a perfect stay at home, Leave it to Beaver mom. Well, things didn’t work out that way. After a year of trying, we had every test done in the world and they couldn’t find out what was wrong. In the next couple years we endured 5 IUIs and 3 IVFs. Finally on the third IVF we were successful.

During my 3rd IVF is where I discovered IVF.ca. I was desperate and had googled “success with day 5 morula transfer” and up came a post from this site which offered hope to me. Over the years, this site has offered a wealth of knowledge from doctors and other IVFers and has been a constant source of support. I always thought that after I was “done” with my journey I would stay on this site to offer the same support and knowledge others had given me.

It took me four years to conceive my child. At the time I thought that those would be the most difficult, saddest years of my life. Little did I know of what was to come…… For the first year after my daughter was born, I was the happiest person in the world (I’m sorry if that’s hard for some people to hear). I felt normal….I know some of you understand that when you are suffering infertility you feel like it is all consuming. Then we started thinking about a second child. Before I conceived all I prayed for was one baby, that’s all I needed. That is why I was so shocked at how sad I felt. I wanted a sibling for my daughter. But I’m going to be honest……..for me having one child did make it easier going through it the second time. It still hurt but the sting was a tad less. I got pregnant. Ecstatic!!! At 9 weeks we went for our ultrasound and there was a great deal of fluid behind the baby’s neck which suggested that there could be a chromosomal issue with the baby. We wouldn’t find out until our 12 week ultrasound when they did the nuchal test, the severity. I was heartbroken and confused. The next few weeks were agonizing and sleepless. When we went for our first trimester screening, we held our breath. The minute I saw the doctors face I knew that the news wasn’t good. Our baby’s heart had stopped beating. Our little one had passed away.

After 6 months, we tried again. We were pregnant again! I was so anxious all through the first trimester. When we went for our first trimester screening I was a nervous wreck and when we found out that the baby was healthy, I cried tears of joy. I was still nervous but we had passed the big hurdle. When I went for our 4 month appointment, we heard his amazing heartbeat and I was overjoyed. The doctor told me that I should stop worrying and enjoy the pregnancy, I was “in the clear”! A week later at 17 weeks, I went to go to the bathroom and all of a sudden felt a bulge in my vagina. My bag of water had passed through my cervix. I was rushed to the hospital and went through the worst experience of my life. The doctors tried everything to save my child. But my water broke and I had to deliver my perfect beautiful baby boy. He was born alive and stayed with us for 25 minutes. It was devastating, the worst pain I had ever endured. There was a time that I didn’t think that I would get past it.

After a lot of sadness, self-reflection and mourning, 9 months later we conceived through a very complicated IVF process we did in the US because of our unique situation. So fast-forward 29 weeks……that’s where I am now. This has been some of the most difficult months of my life. My pregnancy is very high risk. We confirmed during this pregnancy that I have an incompetent cervix. I’ve gone through weekly ultrasounds, a cerclage surgery, bedrest and more anxiety than anyone can imagine. Up to 24 weeks I cried EVERY single day. After reaching 28 weeks (a big milestone) I have relaxed a little but I still am scared everyday that this little boy will join my other son in heaven.

So there is my story. I was a vet before I came to IVF.ca……4 years of infertility, 5 IUIs and 3 IVFs under my belt. Then I became someone with secondary infertility. Then someone who had experienced a first trimester loss and then worst of all I joined the second trimester loss club. I think in terms of the infertility world, I’m pretty well-rounded!

So, now I want to explain why I’m leaving this site. One of the best things about IVF.ca is that there is a broad range of women (and men) on this site. If you look at the headings of the forums……it’s for people who haven’t started IVF yet, people in the midst of IVF, IVF vets, people experiencing secondary infertility, people adopting, women who are pregnant as a result of fertility treatments, moms who are moms to IVF babies and those who have done fertility treatments and have lost babies. It’s an amazing thing to bring all these women together. There are no headings on this site that are highlighted and starred and labeled “priorities”, this is a site that is supposed to be for all of us.

Over the last year, there have been a lot of comments made on threads and status updates that have upset me but the good things of this site always outweighed the bad. What I found difficult with the discussion that went on a few days ago was the judgmental nature of some of the comments. People make assumptions about what people have been through, their feelings and emotions. They put their own pain above others and make assumptions about how their pain is worse than what you are going through. For me personally, the four years before I conceived my daughter were horrible and there was a time that I didn’t think I would ever have a child. But FOR ME that was not the most difficult time of my life…….losing my baby boy at 17 weeks was far worse. The pain was not even a comparison. Yes, I had a living child but no one can imagine the loss I suffered unless they have experienced it. Luckily I had found women on this site who had suffered similar losses and understood. I’m not saying my pain is worse than other people on this site who are going through IVF, I’m saying that everyone’s journey is personal. No one has the monopoly on pain and suffering and it is so unfair to claim it. A month ago, my friend suddenly lost her husband. Absolutely devastating. When I spoke to her I talked to her about my loss but I prefaced it with “I know my loss is in no way as difficult as yours……”. She stopped me and said that it was, that I lost someone I loved too. I was shocked by her compassion and grace in her time of need. Amazing.

Infertility is a sisterhood for me. It is a bond we all have…..whether we have been able to conceive or not at the end of it. Before I was pregnant, my mother used to say to me that when I had children I would back and laugh. NO WAY. I will never forgot what I have been through in the last 8 years and still going through. It is something I will carry for the rest of my life. What I will say is that everything I have been through has made me a stronger, more compassionate, better person.

We IF sisters should be supporting one another through the good and the bad, not polarizing each other into groups of “fertiles” vs “infertiles”, BFN vs BPFs. IVF.ca should be a safe place. A place that people feel like they can say things and not feel judged or bullied or made to feel bad about themselves. We have the outside world for that. That is why I left…….I didn’t feel safe anymore. I was upset that people told me and other members that we were second class citizen on this site when they have no idea what we have been through or how we are feeling. Who has the right to decide the hierarchy of who suffers or is in pain. I don’t want to stay on knowing that every comment I make would be dissected and that I would have to walk on egg shells with any positive or negative update I would make. For the record, I never put up weekly updates of my pregnancy but only big milestones as I was at risk for preterm birth, so I didn’t feel like I was necessarily the target of some people’s comments. I love this site and I have made so many amazing connections and people that I feel so invested in but I think it’s time to move on to a site that addresses my current concerns of pregnancy after late miscarriage and high-risk pregnancy.

So here is one thing I will leave you with and my two cents on a solution so more people don’t leave (a lot of people silently left too) or hurt feelings. If you have a problem with things said in status updates or threads……..bring it up to Rick and the site administrators. I have so much respect for them and it should be up to them to decide what is the right thing to do. It is not up to ANY of us to decide what to censor or what is considered offensive, disrespectful or inappropriate. None of us have ownership over the forums and it is not up to us to make decisions, take it up with those in charge, start a discussion. If they don’t agree, then it is your choice to leave. This site is a privilege, not a right. I think that this would be the best way to avoid conflict, hurt and unhappiness on this site.

Anyway, I wish ALL of you the best of luck and I hope all your dreams come true! I will miss so many of you especially my “loss” friends (I do plan to lurk from time to time, I need to know how you girls are doing!) If there are others who are going through a high risk pregnancy or an incompetent cervix and have a question you can message me, the messages still go to my email so I will answer them even if I’m not checking the site. Be mindful and compassionate towards each other and appreciate the privilege of being on this AMAZING site.

  • leigh14, Luckypenny, Zuu and 7 others like this

very well said...many of us at this site are sorry that members like you are leaving the site. I wish you many happy days with your boys and hope your pregnancy will come to terms without any complications. I hope I can join you in the world of motherhood soon ;). we will miss you ;(.
I'm so sorry that you are leaving. Your entry is a perfect example of the struggles, joys, losses, victories and undeniable impact of the IF journey. How awful that some dare to comment against any women here or deny them of an opportunity to feel comfortable sharing about a difficult day or a hard-won success. How could anyone not want to cheer you on with everything they have in their being, no matter their circumstances?

For the record, I have only posted about my pregnancy once, and I am 20 weeks. I would have loved to post whether it's a boy or a girl next week when I find out, and feel like I deserve to do so here in a community that supported through my hopeless days and who, just might, be happy for me (or at least tolerate) a milestone for me.

I spent a long time not being able to relate to pregnancy status updates or threads, but despite my depression and minute-to-minute fears and stresses, never once thought anyone was in the wrong. I truly felt that I would never deserve anyone feeling happy for me if I wished poorly on those celebratory comments, if I ever were so lucky to wade out of the darkness and achieve my own dreams. I always assumed that anyone posting here was part of a sisterhood and that successes were hard-earned and what we all aspired for. It was an easy choice for me to stay away from threads and not read statuses - without assuming others were flaunting things at me or making my own pain worse. To be honest, it was the real world that upset me - I always felt differently within this community.

Your entry is poignant and touching. I'm sorry we'll lose a member as selfless, brave and open-minded as yourself. I wish you all the very best with your current pregnancy, and every great thing!
    • Heregoesnothing and smurfette_w like this
Well written. Take care.
I'm sorry you feel that way. I don't think there is necessarily a pain hierarchy, however I would never compare my ectopic loss to your loss of a baby boy at 17wks....just like I would never compare secondary IF with primary IF, just like those with singletons have no idea what it's like to raise twins...etc etc etc.....I have been a member of this site for 7yrs and have seen members come and go....I myself have had mini breaks from time to time, with that being said....I have always been respectful of the fact that there IS a BIG difference b/w those who will never see a bfp or have the joy of the pitter patter of little feet in their homes.....in all my years here I do recognize that my pain is LESS than those who suffer with primary IF....I have always tried to be mindful of the fact that during my IF struggles I had once been PG and had a dd, my dh however would have been considered primary IF since he had no bio children...

my point is this....there are different levels of struggle....I don't take for granted that I had a bfp on ivf #1....I will never know what it feels like to cycle after cycle and NOT get pg....I DO know what it's like to ttc for 2yrs....I do know what it's like to have a loss....BUT....I think sometimes we have to look at our lives and think "if I post this, will I hurt someone?" is there a better place to post this?

I in general try to keep my twin talk to the parenting forum....I do my best to be mindful of when and to whom I "gush" about parenting....or "vent" to.....there have been many times I've typed a status update...reread it....and deleted it....I've been called out on status updates and my first response is to be defensive but then I try to put myself in that persons shoes.

Those of us who have children DO have to be mindful of our siggy's and our status updates...that is a fact of life on this site....always has been always will be. This site was here for me through my ivf...through my pg....and now with twins....whenever I go into an area of sensitivity I turn off my siggy.....

Blogs are a great place to talk about kids and whatever you want to....it's your blog you have the right to speak freely.....at the end of the day....I would love to see the status update bar gone. It only serves to create tension b/w members of the site.

I wish you the best.
    • Duck, Vetter, gibasgirl and 1 other like this
Very well written but sorry to see you go.
Very well written. I for one am incredibly sorry to see you go. Your loss will be felt by many. I wish you all the best and you and your family will be in my thoughts and prayers.
So sorry to see you go, the loss is ours. I hope and pray the last 11 weeks of your pregnancy fly by quickly, happily and healthily. Thanks for sharing your story, you're an inspiration and I couldn't agree more with what you have said. Wishing you and your family all the very best. Again, I'm so sorry you're leaving.
Sep 22 2012 01:09 AM
I'm so sorry that you are leaving, you have truly suffered a lot through your fertility issues and we are/were lucky to have someone like you to be here with us for so long. Your strength is admirable and you will be sorely missed. I do hope you decide to return one day.

You are absolutely right, this site is a privilege, not a right, and somewhere this fact has been lost (by some at least). I always thought this was an accepting community that provides support to EVERYONE EQUALLY who has had to endure IVF regardless of their outcome, and yet it looks like assumptions are being made on those who are successful even though they have no idea what that person is going through. NO ONE knows anyone else's journey as well as themselves, and assumptions should never be made about anyone, regardless of what one posts, but it seems like that is not possible for some. The unfortunate result is that this site is losing people like you who are invaluable to this community.

I wish you all the very best on your journey.
What a beautiful and heartfelt post. I am so sorry to see you go.
I think that we all have a tendency to forget that pain is relative to our life experience and that we each feel it to different degrees (one person may have very little pain to a particular situation and another be crushed by the same situation).
I truly believe that forgiveness is a huge part of the IF journey regardless of whether we succeed or not.
I'll be sending you tons of positive vibes for your current pregnancy:)
I'm newer on the site, but have enjoyed your posts and status updates. I've seen sites blow up far worse than this, one to the point where a disgruntled member took it upon themselves to hijack the site, forcing the owner to completely shut it down.... Since then, my goal has been pretty singular. Avoid DRAMA. I refuse to engage in arguments... My online life has been far simpler since then...

I was on babycenter, and still am... When I was struggling, I found a need to isolate myself from the group, because all the newbie bfp's were starting to get to me, and I reconciled that I never wanted to be THAT person... I never wanted to hurt when someone else was happy... A timely sermon at church underlined this for me, and since then I make a conscious effort to be truly happy for whoever gets their bfp, whenever they get their bfp!!!

I'll be sad to see you go... and likely when I get pg I'll do the same (IF I get pg is what I should say!)... I would recommend babycenter as another fantastic website for community... I don't know if it'll be the same quality that you have enjoyed over the years here, but it's pretty decent.... Hopefully one day you'll come back, and share your beautiful baby photos. You will be missed, and the site will be less for having lost you.
Sep 22 2012 03:37 PM
"Who has the right to decide the hierarchy of who suffers or is in pain. I don’t want to stay on knowing that every comment I make would be dissected and that I would have to walk on egg shells with any positive or negative update I would make."

"Like" this. I felt the same after that post... like I couldn't be honest anymore about what I was feeling.
    • Iman77, galfromaway, jen_goddess and 1 other like this
Sep 22 2012 04:10 PM
I am also newer to site, having only joined in May when I cycled for the first time. I will say that it really saddens me that this community is losing a great member like you! When I found this site in May, I basically stuck to my cycling forum. After my cycle ended, I left the site for a few months because I was quite busy with work and life. However, when I was diagnosed with cervical insufficiency and placed on strict bedrest, this is where I looked for support. I knew there were wonderful women on here like you, DB, and Karolinasmommy who have felt the pain of a second trimester loss! Your words on my blog were so insightful, so encouraging, and so what I needed to hear at that very moment! I don't know what it feels like to go through cycle after cycle without seeing a BFP. It must be devastating! But, I do know what it feels like to be told that my babies likely won't make it to viability, babies that I have come to love more than I thought I would ever love anything. I remember what it felt like to come home from my 17 week u/s and name my babies with DH because I wasn't not sure if we would make it another week. I still worry everyday about how to prepare myself to hold 2 sleeping angels in my arms and say goodbye! Yep, this is why I needed to come back to this site. I needed someone who has felt the pain of a second trimester loss to tell me to BREATHE and take it one day at a time! And now only 3 weeks later, while I am still fighting to get these babies to viability, we are losing people like you! My point is people come to this site for all sorts of reasons, for all sorts of support when they are feeling all sorts of pain. This site shouldn't be exclusive, it should be inclusive! I am so sad to see you go! But, I did just want to say that I will be forever grateful for your words of wisdom and encouragement on my blog. They really helped me on one of the darkest days of my life! I wish you and your family the very best, and I hope the next 11 weeks fly by for you!
    • DesignerBug and ValleyGirl like this
Don't go. Stay and keep the community alive, a community of compassion, support, enouragement, hope and victory. If people like yourselve leave, all that will be left is a community of shared misery. I refuse to accept that infertility reduces our humanity, that it turns us into bitter and self-centered persons. If that is the case, what happens when we do succeed? How do we turn - miraculously- into the most self-less, caring, nurturing and supportive human being: a mother? That's not possible. If we don't have it in us to learn acceptance and wisdom and express generosity of the heart before we are mothers, we will suck when our time comes to care for our little ones and to teach them values and intrinsic happiness. Infertility sucks, but we don't have to suck. So, please stay.
Stellabelle - I hope you may still pop in and PM some of us who are still supportive of you during this time with updates.

You and Karolinasmommy were both such an extreme amount of support when I unfortunately joined the Second Trimester Loss club, and I couldn't have gotten through it without you. I think of you often and pray that you get through these next few weeks without a hitch.

Take Care, and Thank you for everything you've done.
Sep 24 2012 06:37 PM
I admire your spirit Stellabelle.
Love and light to you and your babies.

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