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)

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.

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.

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.