What is wrong with me

“What is wrong with me?” I must have asked myself this question thousands of times. Especially in the last few years.

I asked “what is wrong with me” when we started trying and month after month I wouldn’t get pregnant.

I asked “what is wrong with me” when I finally got a positive pregnancy test, but had been bleeding on and off for a week, in what turned out to be an ectopic pregnancy.

I asked “what is wrong with me” when I got pregnant the second time and couldn’t blissfully enjoy the pregnancy, as I was still hurting from the first loss, only a few months prior.

I asked “what is wrong with me” when the doctors confirmed our second baby was not developing and had died in my womb.

I asked “what is wrong with me” when my body wouldn’t even miscarry naturally, always requiring medical intervention.

I asked “what is wrong with me” when we saw the little heart of our third baby beating in the ultrasound screen and I still couldn’t believe I would be taking this baby home, alive.

I asked “what is wrong with me” when I couldn’t bounce quickly back after yet another loss, as it seemed to be expected from me.

I asked “what is wrong with me” when during my first IVF egg retrieval the doctor uttered in disbelief that I had spontaneously ovulated and so she could only retrieve one egg.

I asked “what is wrong with me” when I couldn’t genuinely feel happiness for all my friends’ and sibling’s pregnancies, as my sadness and jealousy got mixed in.

I asked “what is wrong with me” when I watched one after another, pregnancy tests not showing the expected progression, indicating our 4th baby wouldn’t be coming home either.

After that fourth loss, having been through 2 IVF fresh cycles, one emergency laparoscopy, one dilation and evacuation surgery, loosing one of my tubes and countless examinations and procedures, I needed an answer. I couldn’t bear hearing “just bad luck” anymore. I needed to know exactly what was wrong with me, why my body couldn’t sustain a pregnancy. And I would spare no effort to get an answer.

I took matters into my own hands and even ordered some genetic tests online by myself. I visited several specialists on different countries. I finally paid a large sum of money to one of the world’s leading experts in this field, simply to find out “what is wrong with me”.

And I waited. I patiently waited months on end, while trying to make any lifestyle changes that could help.

As the day for receiving my most anticipated test results approached, a huge wave of anxiety settled in. What if there’s nothing wrong? What if it’s just bad luck? Am I overreacting? Am I wasting time and money and putting myself and my husband through all of this for nothing? Just to satisfy my childish desire for control?

I now really wanted there to be something wrong with me. Anything. Not only so I could focus on fixing the problem, but also so it wouldn’t have been all for nothing.

When our appointment time finally came, I was ready. Dr. Braverman jumped right in and listed all his findings. There are quite a few things wrong with me, as it turned out, but he had a plan. A plan that involved several drugs and surgery, but could give us about 80% chance of conceiving and carrying to term.

After the appointment I felt immense relief. There were reasons. There were possible treatments. I was ecstatic with the news, if only a bit worried about our next steps. And so we left to my (Zika infested) home country for two weeks of vacation. I just needed to let the news sink in before we could make a decision of how to move forward.

Coming back home, I couldn’t let all the information from the appointment in the back of my mind anymore. It started to overwhelm me. All of it: the diagnosis, the prognosis, the suggested treatment, the financial strain required. It all seemed like too much to bear.

The initial excitement was now fully converted to worry and doubt. Is all this really necessary? What consequences all these drugs will have on myself and my baby? Why should I trust this doctor more than all the others that told me I should just try again? Why would him be right and not the others? Just because he fed my desire for an answer? And what answer is that, anyway? It’s not a one-line diagnosis. It’s a collection of little things here and there, which may or may not be contributing to my losses. And his treatment suggestion started to feel less like my much desired tailored protocol and a lot more like a from-the-shelf solution offered to everyone.

In the world of reproductive immunology there’s no shortage of antagonistic opinions and disagreements. No treatment or diagnosis is easy and straight forward. There is too much doctors and researches are still trying to comprehend, so it’s easy to feel like a lab rat.

Yet, we still needed to make a decision. One that was right for us, our individual situation. Although it took a lot of talks, a few arguments and many tears, we reached a decision that we were comfortable with.

So here’s our current plan: we are going to waive surgery for now and try a FET (frozen embryo transfer) while following the reproductive immunology treatment protocol. And hopefully it will happen next month (August).

HDR photograph of an abandoned dock set afire by intense sunset color

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For those who would like to know all the nitty-gritty details of what seems to be wrong with me, here’s the list (Disclaimer: I’m not a doctor nor an expert, I’m simply stating my personal understanding on these complicated issues):

  • Endometriosis. Braverman was very adamant about this and expects it to play a very large role in my case. That’s why he was strongly advising excision surgery before any further treatment. This was also one of my major doubt points. Even though I’m quite certain I probably do have endometriosis (only surgery can diagnose it for sure), as I have several symptoms and family history besides Braverman’s findings, I was not convinced it’s causing so much damage at this point. We did succeed in achieving 7 high grade blastocysts out of 10 eggs in our second IVF attempt, which is a quite good result. Our decision has then been to postpone surgery for now and give it one try with only the medications first. My endometriosis symptoms are not affecting my life too much at this point and if I can avoid another surgery it’s for the better. It also give us time to research our options regarding surgeons and costs. Braverman advised us to perform the surgery in his clinic, with his trusted surgeon, but as we would have to pay out of pocket for all expenses, this seems unlikely at this point. We are looking into other options within Europe.
  • HLA matches. My husband and I seem to share several HLA genotypes. This makes it harder for my immune system to recognise the pregnancy as such (instead of a threat) and put the protection mechanisms into play.
  • HLA-G mutation. I have a gene mutation which has been associated with a decreased capacity for the immune system to recognise pathogens (such as virus, bacteria, etc). It has also been associated with recurrent miscarriages. It seems the same mechanisms into play when identifying pathogens are used for recognition of the embryo. This made me wonder if this mutation could explain why I’ve been so sick so often during my childhood and teen years.
  • Several autoimmune markers. I have several genetic markers associated with autoimmune diseases, some of which I have already developed (psoriasis, asthma, Hashimoto’s/ Grave’s disease), some I may or may not develop in the future (Crohn’s disease, psoriatic arthritis, among others). This relate to pregnancy loss because, in simplistic terms, shows that my immune system is not great in differentiating between self and non-self tissue (thus the attacks on self-tissue, which characterises autoimmune disorders), which is an essential part to the process of recognising the developing embryo and activating the protection mechanisms.
  • Natural killer cells and cytokines. This part is very confusing. Some doctors believe NK cells can attack an embryo and thus are only interested in elevated levels of these. Braverman does not share this belief. He says there has been no scientific study to date showing such attack happening. However, he believes that unbalances on these cells and on certain cytokines (chemicals released by the immune cells by which they “communicate”) can be used to understand the actual state of a person’s immune system, giving “clues” regarding faulty mechanisms. In my case, I have several that are too low, several that are too high and some there are within normal ranges. He says it’s compatible with endometriosis, psoriasis and asthma.
  • Highly elevated anti-paternal HLA antibodies. My immune system seems always so slow and weak when reacting to infections, but it’s all too eager to develop antibodies against my husband’s cell tissue. This is quite important as Braverman believes these antibodies can effectively attack the developing embryo and placenta. However, even though I have very high levels of these antibodies, so far they don’t seem to be attacking (not complement-fixing, in the technical term), but Braverman is concerned they could switch into attack mode during pregnancy.
  • MTHFR mutation. I’m heterozygous compound (have one – out of two – allele for each mutation). This has been associated with increased risk for recurrent miscarriages. I already knew this from my own research and have been using methylated folate and methylated complex-B vitamins since October last year.
  • Elevated anti-thyroglobulin antibodies. This was seen before, during my last pregnancy, but never while not pregnant, until now. It seems I’m developing an autoimmune disease against my thyroid. It’s hard to say if it’s Hashimoto’s or Grave’s at this point, and my TSH is within normal ranges for now, but on the lower side. I’m not sure what to do regarding this besides keeping an eye on it. My body is able to counteract the attack so far and produce enough hormones.

These were the major findings. It’s not all bad news though, so for the record I’d also like to list some of the things that are not wrong with me:

  • No KIR genes
  • No APAs (and this time all 21 were tested)
  • No ANAs
  • No TH1/TH2 unbalance
  • No thrombophilia mutations besides MTHFR
  • Normal levels of homocysteine, vitamin D, proteins C and S

As we’ve decided not to have surgery for now, my reproductive immunology treatment protocol will consist of the following drugs:

  • Intralips infusions every 2 weeks from cycle day 1. This is meant to help regulate my immune system. Each infusion takes 2 to 3 hours and I may need to continue them throughout the pregnancy. I’m currently looking into my options regarding getting this treatment where we live, otherwise I’ll need to travel abroad every 2 weeks (which is far from ideal, but I’ll make it work if need be).
  • Low-molecular-weight heparin (Lovenox / Clexane) injections daily from ovulation. This is a type of anticoagulant. It’s meant to help with blood flow to the developing embryo. Mainly due to my MTHFR mutations.
  • Prednisone every day from ovulation. This is a corticosteroid, used to suppress the immune system. I was quite concerned about using this, as it can cause several unpleasant side effects and if used for long (over two weeks) can cause the adrenal gland to shut down, which can be very hard to recover from. Not to mention suppressing my already weak immune system, possibly leading to basically getting every bug out there. However, I’ll be on a low dose and when I realised this is in fact the same medicine I’ve used countless times before against strong allergic reactions, I was much more comfortable, as I know I don’t react very badly to it (though I’ve never been on it for longer than two weeks, I think).
  • Filgrastim (Neupogen) injections daily from ovulation. This is suppose to help with my HLA issues (matches, mutation and anti-paternal antibodies). It essentially forces the body to produce more of a certain type of immune cell, neutrophils.

Other recommendation from Braverman are to remain on a gluten-free diet (I’ve been on it for several months now), take methylated folate (also been on it for many months), take some specific supplements to help with the endometriosis (I’ve started on his Endo-optimize supplement and probiotics) and supplement with calcium while on prednisone. I’ll also be regularly monitored while on these drugs and need to rerun the immune tests after the beta result (no matter if it’s negative or positive).

The FET protocol itself will be a natural cycle FET. This means, there will be no hormonal replacement during the first part of the cycle. They will simply monitor my follicle with ultrasound scans until it’s big enough, then I’ll take a HCG trigger shot to force ovulation and the transfer will be scheduled to 4 days after that. I’ll supplement with progesterone gel after the transfer. This is the standard protocol on the (publicly funded) clinic we attend and they don’t steer away from their standards. It’s take it or leave it.

We’re taking it and hoping for the best possible outcome.

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These last months I’ve also been asking myself “what is wrong with me” in the context of blogging. So much has happened, there was so much I wanted to write about, but just couldn’t. Maybe I needed time to process my feelings. Maybe I needed some distance. Maybe I started to feel left out as seemly everyone I follow is either pregnant or parenting. So I’m sorry I haven’t posted in a while and I’m really sorry if I wasn’t commenting as much. But I’d really like to say how happy I am for everyone that is finally seeing their dream come true, and I wish you all nothing but the best, as you all deserve it so much!

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23 thoughts on “What is wrong with me

  1. This sounds like a good plan! Spirit Baby Come Home did not get the recommended excision surgery, but did follow Dr. B’s protocol just like you are planning on doing, and her son is one year old now! Good luck and I’ll be thinking of you!

    Liked by 1 person

  2. Sending you so many best wishes and strength that you can take these next steps. You have had such a difficult journey to get thus far, but it sounds like you still have a lot of hope that you will get to where you want to be. I’m hoping for you xxx

    Liked by 1 person

  3. So great to see you post! I am so hopeful for your upcoming natural FET. We actually wanted to do an all natural but it didnt work out for unrelated reasons. I have heard great things about these cycles though!
    Im also pleased u took the time u needed to research things and get yourself in order. I remember after our 3rd loss, I needed that time so badly. Looking back, Im so glad I took it.
    Thinking of you ❤️

    Liked by 1 person

    • Thank you so much for your support! I like the idea of a natural FET too, have too many drugs prescribed already!
      I can’t believe it will soon be one year since my last IVF and pregnancy… But truthfully I’m feeling so much better (mentally and physically), so maybe it will all be for the best.

      Liked by 1 person

  4. I’m so glad you’ve been able to get more information. It makes sense to me that you’d want to have more answers and explanation, and more information in order to make decisions about the future. So glad you’ve been able to find some. I’m also glad to hear that you have a plan that you feel good about and that you’re sharing all of this with us. Wishing you all the best as you go forward!!

    Liked by 1 person

  5. I think your current plan sounds very reasonable. It’s so hard when results are not cut and dry and there isn’t an exact answer. You are in my thoughts and I really hope your next pregnancy is successful. You deserve all good things.

    Side note…you always have the most beautiful pictures on your blog. Do you take them?

    Liked by 1 person

  6. I am hoping so much for you that this cycle is a success. We worked with the Beer Center for our immune issues, but I heard about Dr. Braverman during our 7th pregnancy and would have consulted him if that one hadn’t gone on to be successful. Please know that it is possible to have a successful, healthy pregnancy even after experiencing a painful history of losses.

    I’m glad you’ll be on the Lovenox and other meds you mentioned. I took Lovenox (for hetero Factor V Leiden and MTHFR) during my pregnancies too. (And also have done intralipids and IVIG.) A bit of advice if you haven’t already heard it – ice the area before you inject the Lovenox, and then inject it really, really slowly (like take 30 seconds or longer). That way, it doesn’t sting nearly as much. When I’m in the hospital, I always ask if I can give myself the injection, because nurses don’t have time to do it slowly and I’ve found that it stings like a bee when it’s injected too quickly.

    I relate so much to the “what is wrong with me?” questions you had. Even when we know in our heads that it’s nothing we’ve done and nothing we could have prevented or changed, it’s so hard to accept that in our hearts. At least, that’s been my experience. And it’s so frustrating to not have that medical answer, because how can you fix it when you don’t know exactly what it is that needs to be fixed? I hope this cycle provides a very positive answer – and, more importantly, outcome – for you! I’ll be cheering you on.

    Liked by 1 person

    • Thank you so much for your kind words and support! It’s so great to feel understood and your success story gives me hope and motivation! I also appreciate the tips on injecting Lovenox, I’m worried about all the bruising from it too. Wish you the best! Hugs

      Like

  7. Hi, I just started reading your blog– take caution with the endo diagnosis. Dr. Braverman was sure that was wrong with me too (3 chemical pregnancies, 2 miscarriages). I had a cyst taken out with another well known and excellent RE and she saw no endo at all– or she would have removed it as well during surgery. I feel like he gives that diagnosis a lot, and although it might be right, it might not be too. Good luck!

    Liked by 1 person

    • Hi, sorry to hear about your losses. Are you currently going through treatment? I’ve also noticed how most of Braverman’s patients are diagnosed with endometriosis, but in my case it makes sense, I have several clinical symptoms and family history (my mom have it too). My main concern was that I’m not convinced it’s affecting my fertility so much at this point. But it’s so hard to know what to do, who to trust when we get so much conflicting information. I appreciate your comment and wish you success on your future treatments. Good luck to you too!

      Like

  8. I have endometriosis, fibroids and a long history of infertility. Currently 14.5 weeks pregnant on an immune protocol after IVF after last year’s IVF cycle ended in miscarriage. I know some people (including my own partner!) think immunology is bunkum, but I was willing to give it a go. I had my endometriosis removed before IVF cycle 1, and fibroid resection before IVF cycle 2. This is the furthest I’ve ever got. I took heparin, a bunch of vitamins, prednisolone and had intralipids every 4 weeks. Wishing you all the best with this cycle!

    Liked by 1 person

  9. This is my first visit to your blog. Your perseverance is amazing. Bravo to you for facing it head on. I don’t blame you for wanting to avoid surgery if possible. I would probably do the same if in your shoes. The things we put our bodies through…it just has to be worth it though. One day you’ll get to the top of the mountain.

    Liked by 1 person

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