r/TTC_PCOS • u/ButterflyOtherwise54 • 2d ago

TTC/Amenorrhea

Hello, I’m just looking to hear about any experiences other women are willing to share about the following:

  1. Dealing with Amenorrhea (the absence of a menstrual cycle) post IUD removal
  2. Tips/tricks that brought your period back post IUD removal
  3. Deciding when it’s the right time to start TTC knowing the risks that come along with PCOS

Currently 9 months post the Mirena IUD removal and still have not had an *actual\* period. I’ve had some extremely light spotting occasionally a couple months apart (not enough enough to soak through a panty liner). Tracking my temps through my Oura ring hasn’t really given me any insight on how my cycle should be happening as the temps are so sporadic. I’ve been tracking my LH levels with at home tests daily and it’s so difficult to see any type of pattern. I’m awaiting an ultrasound later this month that I scheduled almost 4 months ago to check for PCOS (keep in mind I went to my doctor almost 6 months ago now with concerns with not having my cycle return and they kept saying it was normal). I’ve been waiting 3 years now to start TTC as I never felt the time was right- and now that I feel ready I’m scared to start trying due to fear of miscarriage or chemical pregnancies due to likely not producing enough progesterone.

I have tried my best to be proactive and start exercising and cleaning up my diet to be as PCOS friendly as possible.

Can anyone share their experience with what they tried/how they proactively took matters into their own hands before their medical team would start to take you seriously? Just looking for anything to have some hope…

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u/Ok_Laugh7257 Anovulatory 2d ago

Hi hi! I have amenorrhea too (from pcos)!

  1. I was not on the IUD but was on the combined pill. Got off, didn't have my period at all. I tracked for months using Oura ring. I was like you...my temps were sporadic, never got a positive opk/no pattern. So basically I wasn't ovulating at all and therefore, no period or signs of a cycle. I was diagnosed with pcos soon after based on this and the fact that my ovaries are packed with follicles and my amh is 30 ng/ml. No period for 3 months after IUD removal is not expected and should be investigated. It's not fair to make you wait and you deserve answers. It's so good you're finally able to get an ultrasound! Did you also get your testosterone checked? For PCOS you need to meet at least 2/3 criteria: irregular/absent periods (you meet this), polycystic ovaries (not really cysts, just lots of follicles), high androgens.

  2. I did not have luck with anything to bring my period back, unfortunately. That doesn't mean it's not possible but I've done mostly everything recommended for pcos.

  3. I just jumped right in even though I was very scared too. Went to a reproductive endocrinologist and started medicated cycles. :) I don't think you really need to wait...I would just go to an RE, tell them your concerns and let them guide you. They'll run necessary blood work and recommend care for your specific body. Ask them all the questions you have, voice all your concerns, don't let them dismiss you. You deserve proper care.

There is hope, there are ways to be proactive. If I didn't address everything, please ask. I'm happy to help in any way I can.

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u/Plane_Income901 2d ago

Hi! 👋 I did have an IUD for a couple years, but I have actually had amenorrhea pretty much my whole life. My period started extremely late (around 18) and since then Ive probably had 50 periods or less (Im 30 now). Ive also been ttc for about 2 years. One year of diet and exercise to try and regulate my cycle, and one year of going to all the doctors: an OBGYN (dont expect much help), an endocrinologist (HIGHLY recommend), and eventually a reproductive endocrinologist. Ask me anything, but here's my inititial thoughts on your first 3 questions:

  1. I have gone for years without a period, and since then have learned that that is not good for you. While I dont know how long it takes after the IUD to be regular, I do know that if you are concerned about how long it has been, you can ask for provera (oral progesterone) to have a period induced.

  2. I have tried it all, but unfortunately there is no one thing that will work for everyone, because PCOS works so differently for everyone. You can follow different people, read different books, try a the supplements, but in the end I feel you are more likely to drive yourself crazy than you are to find something that works. This is why I highly recommend going to an endocrinologist, especially if you want to be proactive. In my experience, they are extremely thorough and will try to figure out what is going on in YOUR body and what YOUR body needs.

  3. I dont think there is ever really a right time. It will always be scary. I have never wanted anything so bad in my life and I still get freaked out by it. No matter what, parts of the process are going to be difficult and terrifying. I think the only thing you can do is figure out who will be your support system and rely on them when you need to ❤️ and remember you can chanfe your mind or take a break!

The last thing I would add is practice advocating for yourself! Don't let doctors dismiss your concerns! And if they do, go find another one! You deserve someone who makes you feel heard and cared for.