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This post has been a long time coming and I’m going to kind of put it in two parts just because I feel like that will be easier. First I’ll share my story and just how things have gone down with me and what I’ve dealt with, overcome, etc. since being diagnosed and then at the end I’ll break it down into a quick Q+A since I opened it up for questions on instagram. I figured this was the easiest.
Sooo, my story. I’m not even sure where to begin. I guess I’ll start with the diagnosis. When I was a teenager, about 15 years old I hadn’t started a period yet. So I obviously went into the doctor where they helped figure that process out. I eventually started, but it was not regular whatsoever from day one. I am talking I would go from having a 20 day long period to not having one for six months. So again, met with my OB at the time as a teenager and after running bloodwork, monitoring thing and taking into account that my Mom also has it, I was diagnosed with PCOS at 17. Which explained a lot. I’ve shared this before, but when I was diagnosed I remember the doctor saying, one day when you’re ready to have babies, I just want you to know it’s most likely going to be really hard for you to get pregnant. I brushed it off, because well 17 and babies definitely weren’t on my mind and honestly I was like – eh what does she know.
Well, fast forward to getting married and trying for babies, apparently she wasn’t lying. My period was still just like it was as a teenager, though I had been on birth control in between this time and being a teenager to kind of regular it out. Birth control (as in the pill) is the only way I have a regular period, but it also well, keeps you from getting pregnant. So obviously I went off of that when we started trying and immediately my period was wonky just like it was as a teenager before I was on the pill. I gave it a few months to regulate and well, it didn’t. And that’s when our infertility story really started, which you can read more about, here (I’ve written a ton of posts on it). But since we are talking more so PCOS, I won’t dive into that too much. I will just say, my original OB was right on point and well, we struggled for years and years with both babies and had to do IVF for our second and a million other meds trying for both.
As far as PCOS has affected me in daily everyday life, honestly a TON. My hormones are so messed up that even before having babies and doing all of the infertility stuff, I have gotten serious headaches, migraines, nausea and hot flashes like a crazy person. I joke that I’ve basically been going through menopause since I was 17. Along with all of that though I also deal with stupid hair on my face and the constant struggle to maintain a healthy weight and feel fit. That last one is really hard and a lot of work. I’m not kidding, I work my butt off to be at even the weight I’m at now and it’s not where I “want to be”. The biggest thing I’ve learned for weight and me is cutting out carbs, which are basically my favorite food group, but it’s the biggest thing I’ve noticed that helps a lot. That and sugars. Sugar mixed with my hormones just don’t do well so I have to watch that not even just for weight, but for how I feel. I feel sick and crappy all day when I’m not taking care of my body X2 because well you just do but then paired with PCOS it’s terrible.
I’ve been on a few meds, metformin for one and honestly didn’t see a huge difference with it. Again, lifestyle changes has helped the best. I’ve done the whole “gluten free thing” and it maybe helped a ton, but not enough to continue to force myself to that. The biggest things like I’ve said are carbs + sugar. Which yeah gluten is in carbs, but I do okay with it in small intakes. As for the facial hair (which was the biggest question) – I keep up with a tinkle razor (linking it, here) and I do that weekly. My hair hasn’t grown back thicker or more, I mean it’s there, but this helps keep it in check. I also started Laser hair removal before I got pregnant which helped a lot, but I haven’t finished yet and plan to after I am done breastfeeding.
I don’t know – I think that’s really the main gist of it, but I will say – I don’t think people understand how much it affects daily life. I’m not kidding when I say there are days I REALLY don’t feel good just because my hormones are so freaking imbalanced. But I’ve learned things that work for me and just take it day by day, every person with PCOS is so different and you just have to find the balance that works for you and your body.
Q: Has breastfeeding been hard with PCOS?
A: Honestly, no I haven’t noticed much of a difference breastfeeding or not breastfeeding with it.
Q: I’ve heard no card diets are the best for PCOS?
A: I mentioned it above, but yes – this is definitely what has worked best for me. I definitely don’t do NO carbs, but I do as little as possible, while still living life.
Q: What doctor identified your PCOS?
A: My OBGYN
Q: Main symptoms for going in for a diagnosis?
A: Mentioned more in depth above, but basically no period and then a really IRREGULAR period.
Q: How were IVF hormones with PCOS or compared?
A: Honest answer, tough for sure. I’m not sure if it was just hormones in general with IVF or paired with already being off with PCOS, but IVF is no easy task – just worth it in the end 😉
Q: Did you do IUI at all with PCOS?
A: No, and the reason why is because I don’t ovulate – like no pill or anything has been able to get me to ovulate and I don’t really have periods anymore.
Q: How long did you try before getting help with infertility?
A: We went in about 8 months after trying and mainly because I knew I had PCOS and it was going to be a thing. A lot of doctors recommend one year of trying.
Q: I’ve heard diet can help regulate hormones?
A: I say yes and no to this and that every one is so different. For me, everyone kept saying go gluten free and cut out dairy and honestly, when I did both, not a huge difference compared to just low intake in carbs and sugar. For me personally sugar intake affects my hormones a lot so when I watch that and keep it low, my hormones and hot flashes seem to do better, as well as making sure I’m drinking a LOT of water. Then carbs do best for helping me maintain a healthy weight.
Q: Have you found a doctor that has been able to help with symptoms?
A: Not really, I mentioned above I’ve tried a few medications for it, but haven’t had much luck with them. For me my biggest symptom controls have been lifestyle and health changes honestly.
Q: How did you pay for all the infertility and everything?
A: It’s freaking expensive, so I know exactly what you’re saying. We saved for a long time for Nash, with Blake we had to pay a LOT of medical bills after the fact and it took years to pay them all off. Infertility is so expensive and it’s so frustrating. We also won a $5000 grant from Bundled Blessings with Nash, which was super helpful and helped with a little portion.
Q: How do you deal with the unwanted hair? It’s so time consuming.
A: It really is and I’ve just kind of gotten into a schedule. I mentioned above the things that help me, but I just know on Sundays – that’s my day to use my tinkle razor and take care of all of that. I also tweeze on and off throughout the week as I see hair. It’s annoying, but it’s just life now and I have to deal.
Q: Tips with losing weight?
A: I wish I had the perfect answer for this, but totally don’t. Carbs + sugar cut downs help a lot for me and regularly exercising, but I’ll tell you what I still have days and weeks where even that doesn’t help a ton. It’s just a balance and not being so hard on yourself.
Q: How often do you naturally have periods?
A: Not sure yet since having Nash, but before that – honestly, never. I think I had one period in the time from having Blake to getting pregnant with Nash, which was like a three and a half year period…sooooo….
Q: Best way to manage PCOS without meds?
A: Well, for me I mentioned meds haven’t done much for me…sooo I just manage it all without. Honestly, it’s been years since I’ve tried medication and maybe should again, but in the past it didn’t do much.
Q: Any endocrine issues before or after diagnosis?
A: Yes and no – I have had some tests come back at times during infertility, etc. with hyper thyroid, but then after awhile come back normal. I’ve also had several cysts in my ovaries and been treated for those often and had those before getting diagnosed.
Q: What was the main thing that helped you conceive?
A: With Blake, a literal miracle. We did almost everything under the sun to get pregnant with her for three years and went to start the bloodwork to begin IVF and I was miraculously pregnant with her. With Nash, the only thing that helped was doing IVF.
Q: How does Marcus do with it?
A: He’s literally the most supportive, incredible husband and puts up with my crazy hormones and hot flashes all the time. He’s just learned that unfortunately things like being really hot (and having the air at 66 degrees) is life and doesn’t complain, just grabs a blanket, etc. He’s honestly just made me feel a little more normal with it all because he doesn’t make a big deal about it and has just learned to roll with the punches and help when things are hard or I don’t feel good.
I think that’s the majority of the questions – lots of weight loss and diet questions, but I covered most of those so yeah 🙂 Drop more in the comments if you have any and I’ll keep an eye out!