If there is one thing that I have learned through this entire journey so far that I can pass on to anyone else is being an advocate for yourself. This can be really hard, but you HAVE to do your research and not be afraid to speak your opinions to the doctor. I know that "they" know more, but honestly in a lot of cases, they don't know "your body" like you do. Don't get me wrong, I love my Doctor, the PA, nurses and all the staff at my clinic, but the reality is as much as they love me and are good at their job, its not their body, they don't have to feel the loss like we do and they are not the one without the desired child. So regardless of their knowledge versus yours, you are automatically more invested in the outcome.
As I mentioned in my last post, I decided I was not ready to jump back into another try, something just didn't feel right about it. I wanted more testing to make sure nothing was missed. I read a lot about the information that other women found from tests like Repetitive Loss Panel (RPL), autoimmune testing and actual testing on/in your uterus. I made an appointment with my Physicians Assistant after my first period. I requested the (RPL) even though I knew they were not usually run until 2-3 miscarriages, but I felt like I do not have the opportunity to wait for that to happen as I am using donated embryos, besides the fact that it made me sick to think about. I also spoke to her about other tests, I wanted a repeat Saline Sonogram, this is a test that I had done 2 times already and the last time it showed I had grown polyps in my uterus which needed to be removed via surgery. This was also something I had to advocate for as it is only "typically" done ever 6 months. But I wanted it done before I would consider trying again to make sure "all was clear". The RPL takes about 2 weeks to come back, so in the meantime I had the sonogram done that showed no polyps or growths and I asked about more testing. The Clinical Manager at my office suggested one test to me called Fertilome. It is a new test that is basically a genetic DNA test for fertility issues. It looks at your DNA and comes up with percentages of you having a specific infertile problem. I definitely wanted this test as it would cover all the areas I was concerned about, RPL- clotting issues, Auto-immune, PCOS, Endometriosis and some more common issues. Then the PA suggested another test called Receptive Dx, which is a endometrium biopsy that checks for some common cells seen in endometriosis or hydrosalpinx (swelling of fallopian tubes). So I researched these tests, talked to Chris and waited to meet with our Dr for the first follow up after the RPL.
This is where the craziness all begins. We found out that I have a genetic mutation called MTHFR (not a curse word). Google it to find out more, especially if you are trying to get pregnant, as it is very common. However, I have a more complicated version as I have 2 compounds, 1 from each of my parents. The theory is, and I say theory because there are not many medical professionals out there that completely "buy into" MTHFR, but there are millions of women that when they treated it, and switched some very simple things in there life found immediate success- so in the fertility world, why not try it??? Ok so the 2 main concerns with this mutation is that it can cause blood clotting, which is a major cause for miscarriages and/or implantation failure. So to treat this concern, I will be taking a blood thinner injection starting before the next transfer and continue until at least 1st trimester (but I plan to stay on longer) unless someone can prove to me that it is hurting me or the baby. The other concern is how my body breaks down and uses folic acid- which we all know is what we need while pregnant. This is where the research becomes controversial. Many doctors recommend more folic acid to cover the bases sort of speak- but many women and naturopathic doctors believe folic acid is not useful or helpful to a woman with MTHFR, so they recommend folate. Which is basically the natural form of folic acid... think drinking orange juice compared to taking vitamin C pills.... but worse if you have this mutation because research shows your body can handle and store folate correctly but can't break down the man made version of it called folic acid. If you have this mutation or are struggling to get pregnant or stay pregnant, do your research on this and see what you think!
Next we talked to our Dr about the other tests we wanted done and he agreed to be more aggressive in our situation and order these tests. I felt relieved. We did the Fertilome blood test and the biopsy. We waited 3 weeks for the results and then had another follow up... this is where everything changes for us.
The Fertilome came back showing high risk for Diminished Ovarian Reserve (my initial diagnosis) Endometriosis, RPL clotting issues and Auto Immune....yes ALL of the things I was concerned about. The biopsy confirmed that there is either endometriosis or hydrosalpinx present, so basically a whole lot of things that can 100% be causing our failure. First thing we tackled was the next protocol, our Dr agreed to treat all of these without more testing. So that means adding the already discussed blood thinner, steroids, and Intralipid infusions. This will all be added to the standard protocol of estrogen and progesterone.
Next comes what to do about the endometriosis. He suggests a Laparoscopy to get inside and confirm endometriosis and remove anything. He says that I most likely do not have Hydrosalpinx as I had a clear HSG (standard IVF testing done last March 2017). I begin to tell him that the test was extremely painful and that the radiologist had a difficult time, but I was told that the report said all was "normal". He looked back at the radiologist report and read it to us that the fallopian tubes were all clear, but now he is wondering if he should look at the scans himself to double check since he will be doing the laparoscopy anyway. He explained that Hydrosalpinx has been proved to be very toxic to embryos, so even though you do not "need" you fallopian tubes when doing IVF, if it's swollen and infected with toxic fluid, this fluid can be leaking into your uterus and hurting or flushing an embryo right out of your uterus.
I went to Vassar Brothers Hospital the next day, picked up my disc of scans, brought it to doctor and they told me the Dr will look at it and call me either way. He called a few hours later and said he was confident that I have hydrosalpinx. He said my right tube looked very swollen, like a sausage and he absolutely recommended taking it out. I about lost it on the phone, flipping out "how could this have been missed??" He explained that some radiologist just look for the "spillage of fluid" and not at the actual tube... BULLSHIT... this is the whole point of this exam to look at your fallopian tubes and there function. I hung up crying and of course called Chris...who was eerie silent (which I knew was not good) and very calmly said, call back the Dr and have him call me. You have to understand how devastating this is to find out a year later... our whole plan would have been different... they would have found endometriosis earlier, we could potentially be pregnant right now from our last transfer as this toxic fluid could have hurt our embryo.... all of this flashing through our minds was just TOO much to handle. We both screamed in anger, not at each other but just to release some emotion.... but after the night or screaming and crying hysterically, it was time to pick ourselves up and move forward.
I got my period 2 days later, went back to the office and looked at the scans myself, it was easy for regular old eye like mine to see... 1 tube was nice and thin, the other looked HUGE in comparison. I cried again. This is what I mean, I have advocated for myself, researched, talked to 100's of women and this was still missed, because I never thought to make sure someone looked at these scans, I didn't push further to say that test REALLY hurt me, can you please look it over, I just trusted everyone and unfortunately things were missed and WE suffered, nobody else, just us. All I can do is hope that this doesn't happen to anyone else, so please BE PUSHY!! Don't be afraid to speak up, its YOUR body and health!!
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