PCOS/MTHFR/ Blood Disorders & Other Challenges — The Bump
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PCOS/MTHFR/ Blood Disorders & Other Challenges

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edited December 1 in Trying to Get Pregnant
This is a thread for asking questions and sharing resources on all issues impacting TTC. Since there are various issues that may make TTGP a little harder for some there aren’t any strict rules on what can or cannot be discussed here. This description (and rules) may evolve as this thread evolves. *Trigger Warnings: There may be times when Loss or Living Children are mentioned. Please use a *TW* to let the reader know a potential trigger is coming.*End TW*. 

Re: PCOS/MTHFR/ Blood Disorders & Other Challenges

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  • Newly diagnosed with PCOS and awaiting further bloodwork. Looking to hear from others who have the same diagnosis, how they were diagnosed and what the treatment plan has been!
  • keikilovekeikilove
    1000 Comments 500 Love Its First Anniversary First Answer
    edited December 1
    @mamanbebe Thank you for adding that helpful info. I only have one mutation of MTHFR; I also take N-A-C, the B vitamin combo you mentioned, & a limited diet same as the one you listed. My OB’s office tells all patients with an MTHFR mutation to take 1 baby aspirin a day to help with the blood-clotting issues that can be exacerbated during pregnancy. 

    @tryingktogku I hope others will chime in here to help support you with your questions. As I mentioned in the other thread, my RE recommends that many of her patients—especially those with PCOS—take Ovasitol. Ovasitol is the name brand that can be ordered straight from the company Theralogix. You can also buy it at the health food store: it’s a combo of myo-inositol and d-chiro-inositol. It helps with egg quality, balancing hormones (PCOS), and managing blood sugar. 

  • @tryingktogku can't add much with my experience with treatment at this point but I got diagnosed with PCOS officially nearly 5 years ago (though I had suspected I had it for much longer). My main symptoms involve crazy long (and sometimes anovulatory) cycles and being overweight/struggling with weight gain.
    Weight loss has so far been my best way of managing my PCOS (but it's crazy hard!). Prior to losing close to 10% of my body weight a few years ago, I went over 3 years without a cycle at all after I went off BC. 
    I'm super curious to hear more about some of these supplements from others. I wonder if it would be worth a discussion with my doctor eventually.
  • @tryingktogku I was diagnosed with PCOS in April 2018. I always knew something was wrong though, because I would go 6 months or more without a period. I went to the doctor maybe 10 years ago, and they basically said I was fine...but they could put me on BC to regulate me. I didn’t want to do that then (honestly, I didn’t hate the lack of periods...and a doc said I was fine, so I went with it). I had the Nexplanon for a couple years, and had it taken out in June 2017 I think and my OB said I could possibly get pregnant immediately. We were “trying” after that (I don’t even count that in our trying months, because it was basically pointless). I didn’t have a period until February 2018, so I knew I wasn’t magically fixed. I went and had a full work up including BW & US that confirmed PCOS in April 2018. Because we were wanting to get pregnant very soon, my doc gave me meds to bring on my period and then started me on Clomid in May 2018 (which was unsuccessful 2 cycles in a row). She had mentioned that she could put me on Metformin at first, but that would take longer...so we opted for the Clomid at first. She later added in the Metformin to be taken daily, and I was switched from Clomid to Letrozole (which I ovulated on once they increased the dose to 5mg). I still take the Metformin daily and take the Letrozole during CD3-7 every cycle, and I ovulate each month now. *TW - this med combo has helped me get pregnant twice, but unfortunately both have ended in losses. - End TW* I’m super encouraged/hopeful that our time is coming! Sorry that ended up being a book! Please let me know if you have any questions or just want to chat! My PCOS journey has been all about TTC...but once I was diagnosed, I realized I had so many symptoms that were connected including weight gain, headaches, and acne. I’m sorry you have this diagnosis, but I hope you can work with your doctors to figure out the best way to regulate/manage it for you! 
  • @keikilove I am taking a Women’s Sense PCOs supplement which has the same ingredients as Ovasitol but also folate and B6

    @gingermama29 that’s great you lost that much weight! I’m still in a healthy BMI but have a seriously difficult time keeping the weight off 

    @bluetickgal thanks for your story! I am so sorry for your loses, how long have you been doing the same treatment for? How does your SO deal with the diagnosis! Have you told people? 

    I’m currently taking a naturopath route to battling this PCOS because my MD won’t do anything medical until we’ve been trying for a year still so I’m on 
    - women’s sense PCOS supplement 
    - Ubiquinol 
    - PMS SAP 
    - Sealicious Omegas 

    which are all natural and my naturopath has recommended trying to a high fat low carb diet to help with the insulin sensitivity. 

    In hindsight I’ve always had PCOS. My first period at age 12 lasted 2 weeks then I didnt have another for 3 months then that lasted 10 days and I was put on the BCP “to regulate my periods and acne” and have been in the pill until 6 months ago ( total of 11 years) 

    unfortunately after coming off the pill the acne has come back, I have been having mood swings, and excess hair growth (two black chin hairs lasers off ASAP lol) although my periods have been very normal In length and blood loss! I have had anovulatory cycles and long cycles >35 days. 

    The hardest part for me honestly is telling family members I have PCOS because they don’t understand the disorder. My husband also does not really get it but I kind of love his ignorance is bliss approach because he is a ray of sunshine when it’s making me sad lol 
  • @tryingktogku thank you! I have done the Letrozole/Metformin combo for 8 cycles. *TW - My cycles after loss were non-medicated and I was benched. - End TW* MH has been super supportive from the very beginning! It seems like the problems are all on my side, but he views it as “our” problem! He has been pretty open to learning about all of it, and he probably knows about as much as I do about everything PCOS and TTC. I have a couple of friends that I’ve talked to about TTC and our losses, but we have not shared with any family at all! We’ve said we will share with them once we are successful, but we don’t want the extra stress/worry on our parents. We are to the point that we feel like they may all suspect that things aren’t happening easily for us, but they have respected and not pried too much. I’d say tell your family when you feel ready! Hopefully they will be supportive even if they don’t full understand! Sometimes I feel like we are hiding something really big from them, but we’ve decided it’s the best thing for us to wait! Awe, I love what you said about YH being a ray of sunshine for you! 💜 That kind of stinks your doc won’t do any treatment until you have been trying for a year, but I hope you are successful before then! 
  • @bluetickgal I don’t know how I’ve missed your reply! That’s Great that YH is so supportive with this! My doc has finally referred me to a OBGYN after some more bloodwork but we don’t have a RE anywhere near where I live so I’m interested to see if she’ll be any help at all! Wondering if you’ve found anything to help with the hormonal acne? It’s super bothersome! 

    Also I’ve been listening to a lot of podcasts lately and “the PCOS nutritionist” found on Spotify has said they LH/ OPK strips are practically pointless for women with PCOS which I find interesting! Has this been the case for any of you? 
  • @tryingktogku no worries lady! We treated with an OB for a year before being referred to an RE...started all the meds there first, and got my cycles regulated. Hopefully your OB will be able to treat you and regulate your cycles as well. Unfortunately I haven’t found much to help with the hormonal acne...except some good concealer! 😂 Most of mine is cystic acne...which you can’t even pop, so I just have to let it run it’s course for the most part. As far as OPK’s go, I started out using them when I first began treatment and they were so frustrating...they were always a little positive and I seemed to have a super short surge. I stopped using them a few cycles in. I started them back this cycle, and it was so much better. It was very obvious when I got my positive. I don’t know if it’s because the medicines have balanced out my hormones enough or what. 
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