After last week's episode I wanted to go even deeper into this topic. I also want to talk about #adenomyosis and how it factors into pregnancy. I wanted to go deeper into it to really understand both fertility and infertility in a more general sense versus just how it factors into both of my diagnosis'. Research has shown that up to 15 percent of couples who try for a baby experience fertility problems. Having trouble conceiving can be caused by a range of things and depending on the cause there are a number of treatment options that can be explored. An infertility diagnosis is typically given to couples (under the age of 35, six months for couples over 35) who have been attempting to conceive for a minimum of one full year without results, according to the American Pregnancy Association. Problems with ovulation affect around 25 percent of all infertility cases. Too much prolactin is considered an ovulation disorder along with PCOS, hypothalamic disfunction, and premature ovarian failure.
Right now my biggest concern is not knowing. I've always has this feeling that conceiving would not be easy for me. And after my diagnosis' I feel like the odds are not really in my favor. From my experience so far there is really no way to tell if getting pregnant will come easy or if there will be challenges -- I'm expecting challenges -- because we aren't trying to get pregnant right now. It seems like a waiting game. And not knowing the answer to the outcome is something that is kind of weighing on me. But we're not ready, honestly. And that means we will have to wait. I wanted to learn more about fertility testing and see if there was anything that I could do at this point to improve the odds or at least get some sort of direction or learn more about what I can expect when we are ready. And the answers, or lack of answers, I got were pretty disappointing.
After my yearly pap last month I talked to my nurse practitioner, the same nurse practitioner who linked my abnormal bleeding and irregular periods to a #pituitarytumor. (If you haven't listened to Episode 2, go back and listen. You can find it on YouTube, iTunes, and Spotify.) I trust this woman. I really do. Without her experience, judgement, and expertise who knows where I would be. I know that sounds kind of dark but after taking the medication prescribed to treat the tumor I have seen significant improvement. Without knowing I wouldn't be taking the medication and the tumor could have been growing and I would have had no idea. So, I asked her about the next steps in figuring out this whole fertility thing. The result of that conversation was a follow-up visit with a doctor. I booked the appointment and a few weeks later I was meeting with this new doctor.
I was really open to learning more about fertility and pregnancy in general, and how it might be different from me. We started talking about fertility, infertility, and pregnancy and how they are impacted by pituitary tumors. During this visit I didn't really learn anything I didn't already know through my own research. Even it that research was just done online. More on that later... Then we talked about adenomyosis and what women who have been diagnosed can expect when trying to get pregnant. Here's where things get weird. Unconcerned, she told me that adenomyosis doesn't pose any risks to pregnancy. All good. No problems. Easy-peasy. Cakewalk. Puppies and rainbows. But I wasn't buying it. I asked her about the increased risk of miscarriage in women who have adenomyosis. She didn't budge. No problems! I asked about Endometriosis and it's affect. Then she explained to me what Endometriosis is. Thanks, good to know! The entire point of asking her is because she is the expert. I was really hoping she could have shared something new with me, cited a recent study, shared her experiences treating adenomyosis, or at least had the facts right. Ooof.
Basically, I paid the $50 copay for what I could have found out with a Google search and a couple clicks. After coming home and being disappointed with the visit I did some more digging and figured that it might be best to go to a fertility clinic or see an REI, a reproductive endocrinology and infertility specialist, since I'm not getting the answers.
Here's the thing though, why didn't this doctor provide a referral? I guess I'm the one who should have asked for one. The tricky thing about this entire situation is that you don't know what you don't know. And since you don't know what questions to ask or what specialist you should see, you might not get treated correctly or even treated at all.
A Refinery29 survey of 948 women who were asked about their fertility really provides some insight into how these doctors are really failing women. These are the percentages of 745 women without kids who responded to the question: Do you think doctors adequately informed you about your fertility:
The remaining 248 women from the survey who do have kids have answers that are on the same track.
So, should I see specialist? I'm hesitant though because it seems like it's just a waiting game and there's really not much that can done until we're actually trying to get pregnant? Am I wrong? Are these specialists going to look at me like I'm crazy? I don't know, but it's a path that I think we will end up taking eventually.
Back to the Google search.
If you're listening, go to the fitmedaily blog to read more about adenomyosis and pregnancy. I've included a bunch of links on the topics.
With two keywords, "adenomyosis" and "pregnancy" the first result you get is a 2016 survey from a journal titled The Impact of Adenomyosis on Women's Fertility that concludes...
Several studies have demonstrated that the presence of adenomyosis may impair the fertility by affecting the uterotubal transport and altering endometrial function and receptivity. Some indirect proofs have shown that women with adenomyosis have poor reproductive outcomes compared with those without adenomyosis. Based on limited available evidence, it has been reported that infertile women who experience adenomyosis achieved pregnancy after being treated with different strategies, indirectly revealing poor reproductive outcomes in women with adenomyosis. Furthermore, surgery could be effective in women with adenomyosis with a history of IVF failure, although latter finding could be partly attributed to the higher rate of early miscarriage.
The next study from Reproductive Medicine and Technology, titled Complications and Outcomes of Pregnant Women with Adenomyosis in Japan also associates adenomyosis to miscarriage...
The present results indicate that the increased size of adenomyosis is associated with miscarriage (>12 weeks) and cervical incompetency, and that the diffuse type of adenomyosis is related to pre‐eclampsia and uterine infection. We should be aware of these potential complications of adenomyosis in pregnancy. Our study also showed that the incidence of PIH and uterine infection was higher in patients with diffuse‐type adenomyosis. We believe that this study provides information that will be useful in the management of pregnant women with adenomyosis.
So far this doctor I saw is 0-2.
I want to be able to put my trust in my care providers. I'm seeing so many stories online about how women with all types of illnesses, whether it's chronic or something that's just not widely studied, who struggle to get proper treatment just because their illness is uncommon or doesn't have a lot of research behind it. It's frustrating.
Another study from the Department of Obstetrics and Gynecology, McGill University, Montreal, Quebec, Canada titled Effects of adenomyosis on in vitro fertilization treatment outcomes: a meta-analysis says...
We conclude that adenomyosis has a detrimental effect on IVF clinical outcomes. It reduces pregnancy and live birth rates and increases the miscarriage rate. It appears that preIVF treatment with the use of GnRHa down-regulation is beneficial. Further studies are needed.
Honestly, I'm kind of speechless. I had read about adenomyosis' link to miscarriage and infertility before I made an appointment to see a doctor. And to hear a doctor, an expert, tell me to my face, with a smile on her face, that I can expect to have zero complications throughout conception and pregnancy is extremely disheartening. My husband will be the first to tell you that I was fuming. I was pissed. After I came home from the appointment I was so mad. After having this experience I know that I can't be the only one, the only woman going though this exact same thing. I've heard the stories.
Now, if I can't have kids, that is completely alright with me. I understand that it might not be possible. I get it. And I'm OK with that. However. However, I'm not OK with medical professionals telling me and presumably other women that despite their diagnosis and illness they can expect to go through the entire process from conceiving a child, through pregnancy, and delivery without any complications what-so-ever. I'm calling bullshit on that.
I'm having a hard time wrapping up this episode because I feel like there is so much more to get into. This is such a complex topic and I know I can't possibly compile all of the information, stories, and experiences out there to completely do it justice. But I do want to keep talking about it. And I'll continue to share my experiences, too.
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