Questions about PCOS (warning: personal information that could be considered inappropriate)
Singelli
Posts: 40 Member
I've been dealing with PCOS for at least 13 years, but it was only 2 years ago that I finally got diagnosed. My parents never really brought us kids to hospitals, and as an adult I've kept the habit. Thus, after my initial diagnosis and prescription, I haven't gone back to see the doctor.
My doctor WAS extremely helpful and gave me all kinds of information, but I find myself having trouble recalling some of it. I've sometimes wondered whether I'm having early miscarriages, dealing with ruptured cysts, or facing the normal every day things that someone with PCOS must face.
Of course, my cycles are always irregular. It wasn't until I was going eight months on my period with a 2 day break, that I saw the doctor in November 2012. (The worst part about this was that those month(s) long periods were almost always super heavy. I've always had to wear the large night pads.) She prescribed birth control and spironolactone (sp?). I took both for perhaps a year (?) before ceasing, because I do want children, after all. Those helped regulate things until about four months ago. I suddenly had a three month period followed by a two week break. Then suddenly, without much warning, yesterday I was in dire pain and bleeding SUPER heavily. I've had this happen before.... but it's a rare occurrence, as I've been blessed with cramp-less periods. When I do cramp up, it's almost debilitating, and it's -always- accompanied with bleeding heavy enough to require multiple pad changes in a day.
(Uh, just fyi, this is where I'm going to be a little descriptive. Weak stomachs should stop reading.)
These episodes are ALWAYS accompanied by the passing of a LOT of flesh. And boy do I mean a lot. I don't pass clumps of flesh normally, so this bothered me. I wondered if maybe I was having an early miscarriage. However, I took a pregnancy test yesterday and had negative results (as always
). My twin thought I might have a ruptured cyst, but she said it wouldn't cause the loss of so much flesh.
I was really quite boggled until just now, minutes ago, as I was doing dishes. I THINK I recall something my doctor said, but I can't be completely positive. If I remember right, she said something about how women with PCOS (or maybe just some of them), don't shed the lining like most other women? That the lining just builds and builds until your hormones / chemicals just -happen- to align correctly? And that when this happens, you lose tons more flesh than what could be considered normal because of the buildup?
Am I having a false memory?
Any information would really put this girl's mind at ease.
Thanks, and God bless!
My doctor WAS extremely helpful and gave me all kinds of information, but I find myself having trouble recalling some of it. I've sometimes wondered whether I'm having early miscarriages, dealing with ruptured cysts, or facing the normal every day things that someone with PCOS must face.
Of course, my cycles are always irregular. It wasn't until I was going eight months on my period with a 2 day break, that I saw the doctor in November 2012. (The worst part about this was that those month(s) long periods were almost always super heavy. I've always had to wear the large night pads.) She prescribed birth control and spironolactone (sp?). I took both for perhaps a year (?) before ceasing, because I do want children, after all. Those helped regulate things until about four months ago. I suddenly had a three month period followed by a two week break. Then suddenly, without much warning, yesterday I was in dire pain and bleeding SUPER heavily. I've had this happen before.... but it's a rare occurrence, as I've been blessed with cramp-less periods. When I do cramp up, it's almost debilitating, and it's -always- accompanied with bleeding heavy enough to require multiple pad changes in a day.
(Uh, just fyi, this is where I'm going to be a little descriptive. Weak stomachs should stop reading.)
These episodes are ALWAYS accompanied by the passing of a LOT of flesh. And boy do I mean a lot. I don't pass clumps of flesh normally, so this bothered me. I wondered if maybe I was having an early miscarriage. However, I took a pregnancy test yesterday and had negative results (as always
). My twin thought I might have a ruptured cyst, but she said it wouldn't cause the loss of so much flesh.I was really quite boggled until just now, minutes ago, as I was doing dishes. I THINK I recall something my doctor said, but I can't be completely positive. If I remember right, she said something about how women with PCOS (or maybe just some of them), don't shed the lining like most other women? That the lining just builds and builds until your hormones / chemicals just -happen- to align correctly? And that when this happens, you lose tons more flesh than what could be considered normal because of the buildup?
Am I having a false memory?
Any information would really put this girl's mind at ease.
Thanks, and God bless!
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Replies
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By flesh do you mean red, bloody clots? or skin colored pieces of flesh?
Just wondering because yes, many PCOS women have high estrogen which means our uterine lining does not shed correctly and some can stay behind every period. It can increase uterine cancer risk and when it does finally shed, can cause very heavy periods with large, sometimes painful, clots.
When I had my miscarriage however, I had skin colored pieces of tendon/flesh looking things as I lost the baby. It was very different than my clots I used to get when I had my period.
Metformin and Inositol has helped a whole lot in the clot/heavy/painful period department. But I am also insulin resistant and that is why they put me on Metformin. But Met helped me get pregnant in the first place and has helped my periods be lighter and no more clots even tho I ended up losing the baby because of low progesterone.
Hope this helps ease your mind. If you have access to it, Inositol helps your period be easier without all the side effects of Metformin.0 -
Well no, they aren't peach colored at all. It's all red. So does this mean that despite the texture, what I'm passing are actually giant clots? That's a little scary.
But it's harmless (as far as PCOS symptoms go), right?
It does indeed do my heart good to know my memory wasn't tricking me.
I do think I remember my doctor saying my estrogen was actually low, and my testosterone high, but I could easily be mis-remembering that. She mentioned so many hormones that it was really quite a blur.
I do know the doctor told me I'd have a hard time getting pregnant and that seeing fertility doctors was my best bet. However, I simply don't have the money for something like that, and it's probably one of the things that discouraged me from returning. The birth control did help regulate my periods though. (When I had regular periods over the past year, I always got a little excited. "Only four days!!!" lol) They also seemed manageable in terms of how heavy/light they were.
How could I get Inositol and what would it do for me that birth control and spironolactone didn't?
Thanks for the information by the way, and I'm really sorry about your loss. I imagine that would be quite horrifying... 0 -
I would look into the inistol, it's available online ( I bought it from amazon). There is a good thread on here that breaks down the different types of inistol and how you can combine them to get the best effect for your body, since PCOS is not the same for every woman.
Also, even if you don't have the money for the fertility doctor, its worth asking about getting metformin at this point, from the doctor who was helpful the first time. It may help regulate your cycles enough to stop the endless periods. I can't even imagine how awful it would be to have a period for months on end! Metformin controls your insulin levels, so you should probably have a 3hour insulin and glucose test done to figure out your starting point before you go on metformin. That is what my doctor did before I got the prescription.0 -
I would look into the inistol, it's available online ( I bought it from amazon). There is a good thread on here that breaks down the different types of inistol and how you can combine them to get the best effect for your body, since PCOS is not the same for every woman.
Also, even if you don't have the money for the fertility doctor, its worth asking about getting metformin at this point, from the doctor who was helpful the first time. It may help regulate your cycles enough to stop the endless periods. I can't even imagine how awful it would be to have a period for months on end! Metformin controls your insulin levels, so you should probably have a 3hour insulin and glucose test done to figure out your starting point before you go on metformin. That is what my doctor did before I got the prescription.
I'll need to look into all this stuff. I've never even heard of inistol or Metmorfin before today, so I have no clue what they are and exactly what they do.
Would I need to ask the doctor when I make my appointment, to have an insuline and glucose test? (I'm sorry if I sound dumb. I know absolutely nothing about hospitals, doctors, and medicine.)
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The insulin test they give me is a 12 hour fasting insulin test. The A1C test is given anytime but my glucose is always very normal. But my fasting insulin test showed my insulin was thru the roof. So that's why I got Metformin, which in turn helped me to get pregnant even tho we werent trying.
the inositol is on amazon, called myo-inositol, which is the cheaper version but works just about as well as the more expensive D-Chiro-Inositol. It really REALLy helped my period be lighter, as i was also one to always wear over night pads and no more clots, which i had TONS!
But yes, id say, and this is just my opinion as I am not a doctor, that if you are passing red clots it is probably just uterine lining clots and not a miscarriage, but I cant tell you that for sure. I had red spongy looking clots, red 'grape jelly' looking clots, small clots, pink clots, huge plum size clots, etc when i had my period before the Met and Inositol. Now i have no clots, and the clots i had during my period were very very different than the ones i had during my miscarriage.
If you are Insulin Resistant, Met can help you lose weight. It doesnt help you get pregnant other than helping to regulate your insulin levels which can, but doesnt necessarily, help you get pregnant. But Met can help you lose weight, especially when combines with a LC/HF diet.
Inositol shouldnt mess with either the Spiro or the BCP you are on as its a naturally occurring compound we make in our bodies, altho with PCOS we dont make enough. But it cant hurt to let your doc know or if you start having side effects stop taking it.0 -
I had red spongy looking clots, red 'grape jelly' looking clots, small clots, pink clots, huge plum size clots, etc when i had my period before the Met and Inositol. Now i have no clots, and the clots i had during my period were very very different than the ones i had during my miscarriage.
I'd say that whenever this happens, mine are more like 'huge plum sized' clots. That's really what had me worried.
Since this has only happened a handful of times in 7 years (I'd guess, at most, once a year), my hormones must REALLY be out of whack (in order for that complete shedding to happen so infrequently, I mean). yeesh.
Thank you for all the information, honestly. This is so much more helpful than all the 'research' I tried doing through Google.
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I learned more on this board than with Google also. My hormones are so outa whack, it is going to take awhile to get them back into order. We've been with out any form of BC for almost 6 years and didnt get pregnant till Id been on Met and Inositol for a few months.
And when i had my progesterone tested when I was 7 weeks pregnant it waas 2.7 but was supposed to be above 20 at that point. Thats why I lost the baby but Ive now got Vitex and EPO and progesterone cream during different times of my cycle along with Met and Inositol and my hormones are just now getting more normal. It takes awhile but it can be managed quite well.0 -
Yes, you will need to ask the doctor for the insulin testing. Its typically done at a blood testing center, you probably have something like Quest diagnostics near you, thats where I had mine done, they are nationwide. Along with the 12 hour fasting test, there is the 3hr insulin resistance test. During that you initially have blood drawn, then you drink a sugary drink. You then have blood drawn once an hour for 3 hours in a row. It takes a whole morning.
They need to test for both glucose and insulin during each draw, this part is VERY important. If they just test for glucose you will not get a full picture of what is going on. For instance, my glucose response is fine, within normal range for the 3hr test, but my insulin goes up high and remains there. That was the information my doctor used to figure out that I needed metformin.0 -
Yes, you will need to ask the doctor for the insulin testing. Its typically done at a blood testing center, you probably have something like Quest diagnostics near you, thats where I had mine done, they are nationwide. Along with the 12 hour fasting test, there is the 3hr insulin resistance test. During that you initially have blood drawn, then you drink a sugary drink. You then have blood drawn once an hour for 3 hours in a row. It takes a whole morning.
They need to test for both glucose and insulin during each draw, this part is VERY important. If they just test for glucose you will not get a full picture of what is going on. For instance, my glucose response is fine, within normal range for the 3hr test, but my insulin goes up high and remains there. That was the information my doctor used to figure out that I needed metformin.
Just to note -- the 3h tolerance test isn't always done, but the fasting insulin, fasting glucose, and A1C numbers are sufficient. The tolerance test can provide more details about how your insulin responds to a glucose load, though. More information is always useful, but it's not the end of the world if that test doesn't get done, the most important are (IMO) the other ones, especially the insulin.0 -
Interesting. My fasting insulin was fine, but the tolerance was crap. I feel like if I hadn't' had the 3hr test, they wouldn't have found out enough information in my case to put me on metformin.0
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Interesting. My fasting insulin was fine, but the tolerance was crap. I feel like if I hadn't' had the 3hr test, they wouldn't have found out enough information in my case to put me on metformin.
Did they check A1C? If so, did that indicate issues or "high normal"? A1C is a measure of your blood sugar over the past three months. So unless you're getting drops as severe as the spikes (in which case, all question would probably have been removed, anyway), it's generally a pretty good indicator at least of whether you'd need a GTT to confirm the suspicion of impaired glucose tolerance (if not an indicator in and of itself).0 -
I'm sure they must have checked the A1C, the testing was very thorough because it was for a fertility Dr who is BIG into the Keto diet. Unfortunately I don't remember what they said about the A1C during the follow up. It was a long appointment and there were lots of numbers thrown around!0
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I've had PCOS for quite a while now. The flow you described is no stranger to me. Metformin is prescribed to regulate hormones and is the first med that we PCOsis es are usually put on (Every Gynecologist I've ever been to says this). Also if you are shedding your endometrial layer heavily, please check with your gynecologist. I ignored mine for sometime and developed endometriosis and needed a D&C. I'm sure your gynec can prescribe something.
Since you are here, weightloss is a God Send! You seem to be doing so well on that front already
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archanajoyce wrote: »I've had PCOS for quite a while now. The flow you described is no stranger to me. Metformin is prescribed to regulate hormones and is the first med that we PCOsis es are usually put on (Every Gynecologist I've ever been to says this). Also if you are shedding your endometrial layer heavily, please check with your gynecologist. I ignored mine for sometime and developed endometriosis and needed a D&C. I'm sure your gynec can prescribe something.
Since you are here, weightloss is a God Send! You seem to be doing so well on that front already
My twin has endometriosis, but when I did go to the doctor two years ago, she said my uterus was otherwise fine. I didn't know you could actually -develop- it?!?! That's pretty scary! I've asked my husband if it's okay for me to schedule an appointment in January, but I haven't done that yet.
I wonder why my doctor didn't mention Metmorfin? Or perhaps she did, but just didn't emphasize it.
I didn't know people could see my weight loss. haha. Thanks! I have to work really hard for it, though. I've lost 15-20 pounds since June. I don't usually eat all my exercise calories back, and ignoring those, I tend to stay at 1200 calories or less. I exercise at least 4 times a week, but usually 5 or 6 times. I might jog/walk 6 miles, or bike 12 miles... all depending on things.
I used to use Tapout XT, a strength and cardio program, but I lost my motivation for that about a month ago. I'm hoping to pick it back up over the Thanksgiving break, but I'm also worried about burning myself out. I got tired a lot over the past few months.
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archanajoyce wrote: »I've had PCOS for quite a while now. The flow you described is no stranger to me. Metformin is prescribed to regulate hormones and is the first med that we PCOsis es are usually put on (Every Gynecologist I've ever been to says this). Also if you are shedding your endometrial layer heavily, please check with your gynecologist. I ignored mine for sometime and developed endometriosis and needed a D&C. I'm sure your gynec can prescribe something.
Since you are here, weightloss is a God Send! You seem to be doing so well on that front already
My twin has endometriosis, but when I did go to the doctor two years ago, she said my uterus was otherwise fine. I didn't know you could actually -develop- it?!?! That's pretty scary! I've asked my husband if it's okay for me to schedule an appointment in January, but I haven't done that yet.
I wonder why my doctor didn't mention Metmorfin? Or perhaps she did, but just didn't emphasize it.
I didn't know people could see my weight loss. haha. Thanks! I have to work really hard for it, though. I've lost 15-20 pounds since June. I don't usually eat all my exercise calories back, and ignoring those, I tend to stay at 1200 calories or less. I exercise at least 4 times a week, but usually 5 or 6 times. I might jog/walk 6 miles, or bike 12 miles... all depending on things.
I used to use Tapout XT, a strength and cardio program, but I lost my motivation for that about a month ago. I'm hoping to pick it back up over the Thanksgiving break, but I'm also worried about burning myself out. I got tired a lot over the past few months.
Have you looked into other ways of eating? You're going to burn out your adrenals if you keep that up. Getting tired a lot isn't surprising, given what you're doing on how little fuel you're giving your body.
Low carb, high fat diets, such as the previously mentioned ketogenic diet, have a good success rate, especially for women with PCOS (and others with issues with insulin), and can allow you to eat more (and probably tone down the exercise to something more sane) and still lose weight. I highly recommend looking into it, especially if you do go on Metformin (Metformin and carbs don't generally play well together, anyway).0 -
Dragonwolf wrote: »Have you looked into other ways of eating? You're going to burn out your adrenals if you keep that up. Getting tired a lot isn't surprising, given what you're doing on how little fuel you're giving your body.
Low carb, high fat diets, such as the previously mentioned ketogenic diet, have a good success rate, especially for women with PCOS (and others with issues with insulin), and can allow you to eat more (and probably tone down the exercise to something more sane) and still lose weight. I highly recommend looking into it, especially if you do go on Metformin (Metformin and carbs don't generally play well together, anyway).
It's uh.... really hard for me to control my diet or -choose- what I eat. The reasons are a bit too personal and lengthy to list here, however. I'd likely get chided up and down the wall because most people have a moral compass very different from my own. (I know that's too cryptic to see the connection, but the cryptic-ness is intentional.)
If I had the option, I'd gladly take recommendations like those, after learning about them.
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Dragonwolf wrote: »Have you looked into other ways of eating? You're going to burn out your adrenals if you keep that up. Getting tired a lot isn't surprising, given what you're doing on how little fuel you're giving your body.
Low carb, high fat diets, such as the previously mentioned ketogenic diet, have a good success rate, especially for women with PCOS (and others with issues with insulin), and can allow you to eat more (and probably tone down the exercise to something more sane) and still lose weight. I highly recommend looking into it, especially if you do go on Metformin (Metformin and carbs don't generally play well together, anyway).
It's uh.... really hard for me to control my diet or -choose- what I eat. The reasons are a bit too personal and lengthy to list here, however. I'd likely get chided up and down the wall because most people have a moral compass very different from my own. (I know that's too cryptic to see the connection, but the cryptic-ness is intentional.)
If I had the option, I'd gladly take recommendations like those, after learning about them.
In my opinion, your health and even life trump any amount of chiding by others who probably have no idea what you're dealing with (seriously, burning out your adrenals, putting yourself at risk for endometriosis and even cancer or a heart attack are not things to be taken lightly and could end up killing you). I hope you can do what's right for you -- up to and including changing your situation so that you can actually take care of you.
That said, depending on the details, you may be able to work within your environment (hopefully, it's not as toxic as my mind is making it out to be). For example, if you're part of a culture that is vegetarian or vegan, you can still increase your fats, through things like avocado or coconut products. There are actually quite a few low carb vegetarian resources out there, allowing you to do more of what your body needs, without ruffling too many feathers.0 -
Oh, I was talking about ruffling feathers here if I listed the things that 'hold me back'. LOL
I'm not around any kind of culture that limits what foods I can eat (as in.... no vegetarians, pescetarians, vegans, etc.).
I do the best I can do, with what I have. I try to listen to my body and always be aware of my physical limits. I will admit that I sometimes wear myself out after a few weeks, but I also take a lot of breaks / loosen up on my efforts.
I've learned that the best way for me to be emotionally safe, is by working within the confines of my ..... eh... lifestyle? I'm not sure which word to use.
I'm not trying to slap anyone in the face or say that I'm perfect / right; only that I'm -trying- to do what I can while keeping my mental / emotional health in check as well.0
