TTC with PCOS...what to do??

indianbeauty24

Hi I apparently have PCOS. I have all the symptoms.. my journey pretty much started off right after I had my 2nd child in July 2014. After I had her I was having a hard time stopping the bleeding. My spouse and I didn't want to get on birth control because we didn't really believe in it. But after months of continued bleeding I got the mirena because I was told it was the only thing that would help stop the bleeding . My docs asked me every time I went to a appointment and I finally said screw it just put it in.

I got the mirena put in Jan. 2015 and bleed for 3 months!!! Finally it stopped around end of April beginning of may 2015. I wasn't getting periods anymore or I would just spot here and there. I wasn't happy I had it in but happy I finally was not bleeding !

Despite the stress and such we had going on (new baby, my oldest daughter was a cancer patient she was 5yrs old in 2015 so it was really hard on us stress wise. That's when stress really started picking up. Even tho she had already been sick since she was 2. My spouse came into my life when she was 3...lol sorry confusing).

Anyways , we decided we wanted to try for another baby and that I should get the mirena out . Not only trying for another baby but he said he could feel the mirena or more less the strings
During sex. I got it taken out Jan. 2016 and bleeding was off and on. I was having periods but every like 2 months. And we just couldn't get pregnant. I never thought about trying a fertility doc because I had faith that it would happen on its own if it were ment. I also was told that the hormone or w/e in the mirena may take up to 1yr before getting out of your body/system.

In july 2016 my oldest daughter passed away peacefully at home from a long battle with neuroblastoma. She was the sweetest girl. You can check pics and her story out on her page (www.facebook.com/PrayersForMaliyah) .

I had realized that I haven't had a period for about 2 months and then In august I finally got a period. This time it started off regular and then got heavier and cloty and crampy. This period has been going on until this very day 3/16/17! Now there were times where it stopped for maybe a week or 2. Then started back up. Or when it would stop and we would have sex I would start bleeding like 2 days later . I mean can you imagine the stress added to my life ?

This really caused a lot of problems between us . It's hard to be able to please your spouse when this issue won't go away plus trying to have a baby and other stresses in a relationship. It was really hard! We could barely have sex! Frustrating.

So in dec. 2016 I was put on a medication called medproxyprogesterone that you take for 10 days and it's supposed to dry you out and then flush out. It flushed me out and I stopped bleeding maybe a week and then back comes the bleeding . Then they said okay I'm sorry but you have to regulate your periods if you want to be able to conceive and ovulate so they put me on birth control pills Jan. 2017. Also in jan I had an ultra sound to see why I was not only bleeding heavy and soaking thru pads and tampons but also having clots really big and I had to be put on iron pills .

The ultrasound said I had a blood clot and apparently that's when they seen polycysts and enlarged ovaries . (Which I wasn't told about the cysts until my last appt.) so after the ultrasound they said just that's when they said continue the birth control pills as I have been doing .

Fast forward to now march 16, 2017, I had a recent ultrasound that showed no cysts , regular sized ovaries and no blood clot anymore just a little bit of blood left. I was happy about that. I followed up with my doc on this past Wednesday and just wanted to see what else we could do to make the bleeding stop as it's still frustrating . She said I'm going to diagnose you with pcos... I'm like what? Why when the ultrasound was clear the 2nd time? She said the symptoms I had such as having a hard time loosing weight , stress, some hair loss over the past few months , irregular periods and you not being able to ovulate .

Now I did have the glow app that I followed and it would tell me when I was supposed to ovulate and it's funny because the times when I was ovulating I wouldn't bleed (which was super rare) but still not pregnant .

So okay sorry for the long post I wanted to just share my story . Any insight !? Send me some positivity please . Is there hope for pregnancy. What do you take what do you do to help ?

Add me as well on here so I can talk with you all.

Aclaire88

@indianbeauty24 Wow your story is amazing. I'm so sorry for your huge loss. I was drawn to your post as someone with PCOS and other than being saddened by your story I was shocked with your Dr's diagnosis.

What you've described is not really in line with Polycystic Ovarian Syndrome. The fact you were able to conceive two beautiful children in the first place is also a good sign.

PCOS can easily be check via a blood test as it's an endocrine disorder and they can tell based on the level of testosterone you produce as PCOS is caused by having too much!

Women with PCOS are often quite overweight, not just have difficulty losing weight (which is half the female population) they are also prone to pre or Type 2 diabetes (I have Prediabeties) which also makes weight loss difficult, grow excess hair particularly facial hair, have little to no periods, can't conceive or reach full term pregnancy without quite a bit of intervention. On an ultrasound it would show as having multiple follicles in each ovary as opposed to one.

Yes women with PCOS are prone to blood clots (mostly due to being unable to ovulate properly) but it's not actually about cycts, I've often read the opinion that the condition should be renamed as people mistakenly believe that it is about having cycts on your ovaries. It can be managed by taking the contraceptive pill, to 'preserve' your womb till you want to try for a baby. The fact you're bleeding could just be your hormones out of wack after the mirena and you might need to try another maybe stronger course of progesterone.

Let me know how you go! I'd be interested to know how your blood test goes xox

KnitOrMiss

I have moderate to severe PCOS, and I've not had elevated testosterone, ever, that I know of - so that's definitely not the cause of MINE. While they don't know for certain what causes it, in my own research, most PCOS seems to be triggered by underlying insulin resistance (once insulin is out of whack, it pretty causes cascading failure in most, if not all related systems. The elevated testosterone is generally a result, not a causality. It often takes something significant such as your out of control bleeding situation to get the issue addressed because the other issues are not jumping up and down and waving bright red flags at us - and are often attributed to just being a woman, having stress - like your daughter's illness and death (my condolences on your loss - though I love that it sounds like you made the absolute best you could of her time here), attributed to aging (even not being a teenager anymore is considered "aging"), being told it's just in our heads because standard testing doesn't find the major issues, etc.

And I agree that PCOS is a syndrome - which is a collection of symptoms. You can have 1, 3, 12, or all of the symptoms. From what I understand, you can even have none of the major symptoms and still have PCOS. There is so little deep truths actually known about PCOS because it presents so differently from person to person.

To me, aside from the chronic bleeding (which is a bright, waving red flag telling you something is wrong in the system), it sounds like you have some adrenal issues that might need to be addressed. Pregnancy and delivery are stresses on the female body, and with the added stress of losing your oldest daughter, it is very likely that your stores of these hormones were just drained and the system overtaxed. I am not a doctor or medical professional of any sort, but I had similar issues after my daughter was born. The stresses in my life and the labor/delivery/new baby at home stuff all just took it's toll... Had I received adrenal, endocrine, and hormonal support during that time, I would not have continued to have secondary infertility, which is what you also seemed to be having now.

I did not get my formal PCOS diagnosis until around 35 years old. But then, my ex-husband I were divorced, and some physical and other issues in my life had lead me to not wanting to have any more children, which is ironic, because also not having wanted to endure fertility treatments, this was the first time I understood what was happening within my body and could naturally address the infertility issues. (my daughter was born when I was 24, and I"m 40 now)

I personally feel that you should seek out a Endocrinologist (Reproductive is often best) or Functional Medicine Doctor. When there is this much hormonal chaos going on in the body, you really need to get a baseline for everything going on, because if you just start addressing the symptoms (infertility, chronic bleeding, etc.), you may never address the true root causes and resolve the issues. @stacicali has "skinny PCOS" and is a great resource for a lot of information, too.

Know that any hormonal supplementation affects the gut lining, and the gut lining affects literally every other system in your body as far as hormone regulation/conversion, nutrient breakdown/absorption, so on and so forth. The hard time losing weight, inability to handle stress well, and hair loss are also signs and symptoms of thyroid disorders. Thyroid disorders sadly go hand in hand with adrenal disorders. Getting a formal proper and full diagnosis is what I would recommend. This has nothing specifically to do with fertility, but more so to do with your long term mental, physical, and emotional health. The renewal of your fertility would likely be just an added benefit of restoring your health...

In my personal experience of fighting with the medical profession for 20 years or so, most conventional doctors simply don't have the training to look at everything and see what the root causes are. It is possible that after the birth of your second daughter you had some problem with your uterine lining, a hormonal imbalance that triggered these issues, etc. Birth control pills/devices are a bandaid. They cannot FIX the underlying issues. They manage them.

I wish you the best of luck in your journey to get healthy and to expand your family. I personally feel that once you address the underlying adrenal/endocrine/hormonal issues you're suffering with currently, that based on your history, you should not likely have much problems continuing your family. Get healthy first, and the rest (likely, though not guaranteed) should come... (HUGS)

Aclaire88

@KnitOrMiss wow you've been through a lot! re Testosterone; yes you could have very well got away with not have higher testosterone levels (though it's uncommon in PCOS) hormone imbalance is a fundamental part of the condition not a symptom and the rise in testosterone is the cause of a number of the symptoms. Although they don't know what causes it in the first place, it can be tested for. I agree to go see an Endo and/or Gyno, it helped me and they explained a lot!! I have 'thin' or 'lean' PCOS and baffled my GP, it was a fluke that they even tested me 8 years ago.

This explains the hormonal imbalance better, including testosterone:

http://contemporaryobgyn.modernmedicine.com/contemporary-obgyn/news/hormone-levels-and-pcos?page=0,0

treehugnmama

First I am so sorry for your loss.
I had iud had bleeding for two months then 4 years no bleeding but it messed with my moods. had it out and I had a year of realky huge clots and super heavy bleeding many days I couldn't leave the house. I'd have about 10 days a month I didn't bleed. this went on for close to a year. it was horrible. I was put on metformin. I started low carb at the same time. I found out I was anemic and vit d Def. all same time. lost 65 pounds. started to ovulate again periods went back to normal. 27 day cycle to the day and ovulating....never had that before. so I'm not sure what helped me or if it was a combination but there is hope for you.

Joelle1640

PCOS can rear its ugly head in MANY different ways. Not everyone is overweight, not everyone has an insulin resistance, not everyone has ovarian cysts, not everyone grows facial hair or excess body hair, not everyone has hair loss, not everyone gets acne, not everyone needs medical intervention to get pregnant. It's something that there still isn't that much that's known about it. A blood test won't tell you definitively if you have PCOS as there can be many reasons for elevated testosterone and some women won't register an elevated number at all. PCOS can be hard to diagnose. Seek out a doctor that specializes in it. I have found a clinic near where I live that the doctors specialize in it and it has been a huge game changer. If you can't find a doctor that specializes in PCOS, I would highly recommend making an appointment with an RE, a Reproductive Endocrinologist.

fit_finesse92

I am sorry for the loss of your daughter. I have PCOS and hypothyroidism. I was able to conceive two boys and I had one MC. I would seek out an endocrinologist. I took prenatals and mucinex when I got pregnant for my first, it took a while and I had very low progesterone, I almost lost him. For my second pregnancy I was on metformin (for pcos not to get pregnant)..little did I know metformin aids in fertility. I got pregnant but with my progesterone issue, it was not caught in time and i lost the baby. After that, i took myself off of the metformin and losing that baby made my husband and i really want to try for another, so we did. With having my uterus cleaned out from the MC it made it really easy to get pregnant. When I am pregnant that is the only time I don't have any hypothyroid or pcos symptoms.
I really hope you can get the help you need and baby dust to you.

Kristinam921

There is hope for pregnancy. I was diagnosed with PCOS before having my son. I lost 50lbs (taking birth control to regulate). I then stopped taking the bc my hubby and I decided to try. Boom 1 month after the bc was out of my system boom I conceived! This time around I had gained weight back and I'm trying to loose it again. My doc told me weight loss and PCOS go had in hand for some. Btw you can have PCOS and not have cysts. There is hope.

Dragonwolf

Aclaire88 wrote: »

@indianbeauty24 Wow your story is amazing. I'm so sorry for your huge loss. I was drawn to your post as someone with PCOS and other than being saddened by your story I was shocked with your Dr's diagnosis.

What you've described is not really in line with Polycystic Ovarian Syndrome. The fact you were able to conceive two beautiful children in the first place is also a good sign.

PCOS can easily be check via a blood test as it's an endocrine disorder and they can tell based on the level of testosterone you produce as PCOS is caused by having too much!

Women with PCOS are often quite overweight, not just have difficulty losing weight (which is half the female population) they are also prone to pre or Type 2 diabetes (I have Prediabeties) which also makes weight loss difficult, grow excess hair particularly facial hair, have little to no periods, can't conceive or reach full term pregnancy without quite a bit of intervention. On an ultrasound it would show as having multiple follicles in each ovary as opposed to one.

Yes women with PCOS are prone to blood clots (mostly due to being unable to ovulate properly) but it's not actually about cycts, I've often read the opinion that the condition should be renamed as people mistakenly believe that it is about having cycts on your ovaries. It can be managed by taking the contraceptive pill, to 'preserve' your womb till you want to try for a baby. The fact you're bleeding could just be your hormones out of wack after the mirena and you might need to try another maybe stronger course of progesterone.

Let me know how you go! I'd be interested to know how your blood test goes xox

A great deal of this is incorrect or only partially correct.

PCOS can't be easily checked, in part because it's an endocrine disorder. It's also not just about testosterone, but all of the hormones. It's as much a differential diagnosis as it is tests.

You can also have PCOS without ovarian cysts. I'm one such person. Hell, my OB checked my ovaries while she was in during my tubal ligation, where she could directly examine them, and they had no cysts.

Being overweight only affects about half of women with PCOS. While it's not uncommon, being skinny doesn't rule PCOS out. Additionally, only portions of women grow excess facial hair, have insulin resistance, can get pregnant without intervention, and can have normal periods. Because it's a syndrome, it all depends on which set of issues you have, how they affect you, and how your body reacts to anything you've done to improve your health.

Contraception doesn't really "preserve your womb," it just masks the symptoms and in some of the cases balance a person's particular hormonal configuration (because it happens that a given contraception hormone configuration counterbalances their current state). Symptom relief may be what's needed sometimes, but unless the underlying issues are dealt with, they'll just reappear when the contraception is stopped.

There are actually upwards of five known types of PCOS, depending on how they're categorized.

That said, I wouldn't rule out endometriosis, which is commonly misdiagnosed as PCOS, or is found as a sort of pseudo-comorbid, or endometrial cancer, which also has similar symptoms. It's definitely worth making sure more than just guessing is being done. Seeing a reproductive specialist to make sure it's "only" PCOS would certainly be a good thing.

Now I did have the glow app that I followed and it would tell me when I was supposed to ovulate and it's funny because the times when I was ovulating I wouldn't bleed (which was super rare) but still not pregnant .

So okay sorry for the long post I wanted to just share my story . Any insight !? Send me some positivity please . Is there hope for pregnancy. What do you take what do you do to help ?

I'm sorry for what you've gone through.

There is hope, though.

Check out the Start Here page, which has a bunch of information.

Start with the basics and go from there.

I recommend dietary changes, first. Give a trial of removing dairy, soy, and grains for a month and see how things change. There are some connections between PCOS and autoimmune issues, and these are some of the biggest triggers. From there, see about reducing your carbohydrate intake and increasing fat intake. You don't have to go "low carb," but our bodies actually need fat for proper hormone production and nutrient absorption. The Paleo and similar frameworks are good ones to use as a base for a way of eating that many women with PCOS have had success with, if you want a bit more structure.

For exercise, I'm partial to heavy weight lifting, which tends to have a positive effect on hormones and hormonal balance. I recommend staying away from cardio that equates to endless amounts of running, etc. and favor things like high intensity interval training (sprints, etc). Long sessions of sustained cardio negatively elevates stress hormones, which is counterproductive.

Also, have a look at supplements. Inositol, Evening Primrose Oil, a high quality fish oil (I'm partial to Fermented Cod Liver Oil), Maca root, Vitex, and licorice root, among others are popular and have shown to be effective. Some of these may be favored more once you know what your hormonal profile looks like. That said, most of them won't hurt to try out even before then. I recommend trying out Inositol, first, as it has frequently had positive effects on periods and ovulation pretty quickly. It's also safe to use during pregnancy, in case you do conceive while taking it.

The Glow app is a good idea, especially if you keep the log daily. You might be able to uncover patterns that indicate an underlying cycle, which is a good thing to see, even if your body isn't working like it should.

tmattingly86

@Kristinam921 How long did it take for the birth control to get out of your system??