A Diagnosis

by tessa8m on September 24, 2012

in Serious Stuff

Hello there and welcome to a new week!

***The post talks about THOSE issues- periods and somewhat gross medical stuff, so if you are a man or sensitive/weary of the topic, read with discretion please! Or not at all ;)

First of all, to anyone living in the Western Massachusetts area, could the weather yesterday be anymore perfect?! Bright and sunny, the bluest sky I have ever seen, nice and dry (yay for good hair weather), not too hot and not too cold, with a pleasant breeze… ahh pure bliss.

So how do I know what the weather in the western area of the state was? Well I was visiting my dad this past week to celebrate his birthday! His actual birthday is the 25th, but because we all work/go to school during the week, coming on the weekend was the necessary option. Fine with me though, as it was an excuse to see my lovely family and also to take a mental break from nursing matters.

We all forget birthday cake candles lol, so we improvised with candle sticks! It worked fine :) My dad and uncle!

My older brother and his wife came down for a few days as well, as did my Aunt and Uncle for Saturday night… my uncle just had a birthday too. September is a busy month for our family! My time there was truly delightful- we went for a few walks, all got our baking and cooking on, and hiked up a nearby small mountain.

As always, seeming my family was wonderful and the activities we all partook in were just icing on the delicious cake that I baked for everyone ;). Plus the bed I slept in while there was pretty much the comfiest bed I have ever been in, no lies here. There was some kind of foam top over the mattress, similar to memory foam but way comfier, and the combination of being overtired and that bed, well it’s safe to say I slept like a rock.

Father and the pups

When I came back on Sunday I just did some homework and relaxed. Today after I workout in the morning, have breakfast and such, Ma and I are going to pick up my new baby… Caleb the kitten! Gooooo I cannot wait, so many more pictures coming your way and soon too!

All right it’s time to move onto a more serious subject matter, one I alluded to on Friday.

If you have been reading my blog for pretty much any amount of time at this point, you likely have come across the subject of my period, or lack thereof. Now that we are reaching the end of September, I have officially been experiencing Amenorrhea for four years now. It has been four long years since I have had a natural period, the last time being the first month I was a freshman in college.

It’s been an obnoxious time to say the least.

I have slowly but surely gained nearly 20 pounds back from my lowest weight, exercise a whole lot less than that dark time, take in plenty of healthy fats and other essential nutrients as well, am less stressed and on edge… yet it has not come. You have been through this all with me as I blog about the anger I feel around a bodily function I have no control over. What has been the hardest part about this is not knowing how much more weight I have to gain, how much more food, or how much less exercise I have to do in order to get it back. That lacking knowledge is a terrible burden that often makes me feel hopeless and scared, that I could not possibly continue challenging myself and going against the eating disorder if no results are ever yielded, aka I get my damn period back naturally.

Well I am here to tell you that I have FINALLY found an answer, an explanation as to why I have not had my period in four long and frustrating years….It turns out that I have Polycystic Overy Syndrome, PCOS.

Last Monday I went to my gynecologist, received an ultrasound of my ovaries and indeed it was confirmed that I have a whole lot of cysts in my ovaries, aka PCOS. In order to be diagnosed with this disease, you have to have two of these three: 1) amenorrhea, 2) hormone levels that are off, and 3) an ultrasound, which reveals the cysts. Obviously I have the first one, my hormone levels were tested to be fine, but it was the ultrasound that made everything clear.

This is the time that I want to apologize for those readers who suggested that I could potentially have PCOS, you were right. When I first saw those words, I scoffed them off assuming there was no way in hell I could have it. My naive self thought PCOS was something only overweight and obese women could get because of excess estrogen and fatty tissue. Clearly incorrect and also the fact that PCOS is often genetically passed on was a sure sign to me that I couldn’t have it… the disease does not run in my family.

According to PubMed Health (a place I often read health articles) PCOS is a fairly common condition (1 in 15!) in which a woman has an imbalance of female sex hormones. This may lead to menstrual cycle changes, cysts in the ovaries, trouble getting pregnant and various other health changes. It is linked to:

  • Estrogen and progesterone, the female hormones that help a woman’s ovaries release egg.
  • Androgen, a male hormone found in small amounts in females.

Hormone level changes make it harder for a woman’s ovaries to release a fully mature egg, which is normally released during a natural period, also called ovulation. With PCOS, mature eggs are not released from the ovaries and instead they can from very small cysts in the ovary, which grow in size without treatment.

This is NOT my ultrasound photo, but it looked pretty dang similar to this… though the cysts were not as large.

Because I thought it was a waste of both time and money, I was actually not even planning on going to the ultrasound appointment. I am sick of having all of these appointments that have yielded no answers and only increase the medical bills that I have yet to pay off (poop insurance, how I hate you). I knew this procedure was going to be costly and was basically set on NOT going, when at pretty much the last minute I decided, “ahh the hell with it, at least we will be able to rule out things going on in there”(uterus).

Within two minutes of looking up there, the tell-tale signs of PCOS could be seen- small dots which run along the edges of my uterus making a “pearl-like necklace” appearance. When my gynecologist came in he almost threw up his hands with both relief and delight at finding the answer… he quite literally went “Aaaha! Got it.”

After the procedure I asked him WHY, why did this happen to me and how much of it has to do with the eating disorder? He reported that limiting my intake and messing with my body did effect my hormone levels, but more so I was predisposed for this to happen, it was likely going to occur anyway. Again, WHY? His answer… it’s just one of those things; a disease that can effect 1 in 15 women and regrettably I among them even without the genetics to back it up.

This leads me to the next necessary question, where do I go from here? Unfortunately there is no cure for PCOS, however it’s something that can be treated and the symptoms calmed down with certain measures. Because I don’t need to lose weight (and this helps with obese women), the other option I have is to take birth control to help regulate my body and control the symptoms of PCOS.

Therefore I am back on birth control and in time I will get my period back, helping to relief the effects of PCOS. I couldn’t help but to ask, the annoying question that is on my mind with BCs, will it make me gain weight, the long argued debate of whether this is true or not. As an answer to this, I am on a low-dose pill that will help with what is going on. My next question had to do with my ability to have children, would I? Yes is the answer, but it is likely to be more difficult for my body to conceive and fertility treatments are probably in my future. Right now though, I am not going to think about pregnancy, it is one worry I cannot concern myself with.

So there it is, one of my medical appointments finally paid off!

Polycystic Overy Syndrome is really not the biggest deal and while I am upset that I have this, I am more relieved than anything right now…. Relieved that finally, finally I have found an answer to this issue that has burdening me for years. I know my body is not broken, that while my efforts to get better from the eating disorder have paid off in so many areas of my life, this is not one of them and there is a reason why, a scientific explanation that I have the ability to treat. I am not progressing with my life without this very normal female bodily function.. I am bringing it on to control it and I am regulating the body I have abused for so many years now.

As always, I will keep you updated on how the BC is helping or making me feel, or any other information that comes along with this process! I will say it one more time, what a relief to have an explanation.

**********

-Have you ever heard of or know anyone with PCOS? Or does anyone have it themselves? I welcome all insight into this, I am a newbie with the diagnosis but am certainly planning on educating myself more.

-Alright off this topic, do you enjoy hiking? When is the last time you went?

-Did you do any fall activities this weekend or cross of activities from the ole bucket list? Hiking was on mine :)

-How was your weekend? Tell me any and all things you did!

Enjoy the day friends… I know I will… Caleb comes home today :D

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{ 111 comments… read them below or add one }

1 Brittany September 24, 2012 at 7:16 am

Tessa, I am so happy that you finally have some answers. I know some girls with PCOS and I am totally sure that you will power through it. You are just one awesome person. :) Have a great day. <3
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2 tessa8m September 24, 2012 at 5:12 pm

Thanks a lot Brittany!

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3 Alexandra September 24, 2012 at 7:27 am

AWW what a fun time with your pops, looks like y’all had a blast celebrating together!! :) <3<3
AND OMG OMG I'm beyond happy for you with the diagnosis Tessa!!! FINALLY some answers!! I bet that feels like such a weight off of your shoulders to put a name to the problems. You're gonna get through this, we're all here to support you too, my friend.
Have a great week ahead lovely lady, you deserve it! :D
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4 tessa8m September 24, 2012 at 5:13 pm

We really did have the best time together, I wish the weekend would never end!

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5 Clare September 24, 2012 at 7:28 am

Oh Tessa, I am SO glad that you finally have an answer – I know it’s probably not what you wanted to hear, but at least now knowing what you have means you know what you’re dealing with, and you can be guided in the right direction in terms of treatment etc.

I still to this day have never had a ‘normal period’ (i.e. primary amenorrhea), but I’m currently trialling coming off BC to see if anything has changed.. fingers crossed the body kicks into gear! Thank you so so much for sharing this with us.. I know it must be a RELIEF more than anything, and I hope all your treatment goes really well :)

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6 tessa8m September 24, 2012 at 5:14 pm

I am keeping my fingers crossed for you too Clare, truly!

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7 HollieisFueledByLOLZ September 24, 2012 at 7:30 am

I am so glad you have an explanation. I know it’s cliche, but I don’t really care because I know it is something so important. Have a great week Tessa!
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8 tessa8m September 24, 2012 at 5:14 pm

Thanks Hollie and I hope you do as well!

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9 danielle@Clean Food Creative Fitness September 24, 2012 at 7:32 am

You must feel so relieved to finally have some answers! I’m glad you will now be able to get on track to improving your health and am proud of you for continuing to seek answers! Sometimes it is way easier to just ignore things like this and I think it’s awesome that you are tackling it all head first!
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10 tessa8m September 24, 2012 at 5:15 pm

Thanks Danielle… this is definitely something I cannot ignore!

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11 Fran@ Broken Cookies Don't Count September 24, 2012 at 7:44 am

Tessa, what a relief to actually know what the issue is! It’s a shame that there’s not more that can be done to correct it. I’m always looking for something I can do to correct a health issue. You’ve done so well, though with regaining weight in a healthy way. You’ve done a tremendous job! Take care of yourself and hopefully things will even out. Great job!
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12 Ali September 24, 2012 at 7:45 am

Ahhhh!! I KNEW IT TESSA!!! As you know, I have been doing the coaching on health issues for a few years now, and have a lot of women with PCOS who have healed through nutrition instead of artificial hormones (not that there is anything wrong with BCP, but it doesn’t allow our system to heal itself!) There are a lot of specific foods that can help/hurt, and I would love to chat with you about it! Email me if you want to, but for now check out this link: http://primaltoad.com/pcos/ xox -Ali

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13 tessa8m September 24, 2012 at 5:16 pm

Thanks for the tips and site link Ali, I will let you know if I need anything or want to talk more :) So nice of you to offer too

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14 Ali September 24, 2012 at 8:00 am

BTW- I don’t think it is necessary to follow this one hundred percent- and I think the key here is when you take away certain things that aggravate PCOS is it ABSOLUTELY VITAL to add in superfoods (like tons of healthy fats!!) :)

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15 Amy Lauren September 24, 2012 at 8:49 am

I’m glad that you have some answers! I actually had one of those ultrasounds a few weeks ago when they thought I had cysts (probably suspected PCOS in me too), but turns out I don’t. I’ll probably end up on BCP to get mine back though. It’s good that you pursued this enough to get answers without giving up and that you went to your appointment! A lot of people have PCOS and they do successfully have kids so it is possible.

My weekend… I ran 13 miles on Saturday and besides that watched a lot of football, hehe :)
Amy Lauren recently posted..Gonna party like it’s your birthday, even when it’s not your birthday…

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16 tessa8m September 24, 2012 at 5:17 pm

Yesss congrats on the 13 Amy, quite a distance and now I am sure you know you could go even longer if desired :)

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17 Katie @ Peace Love & Oats September 24, 2012 at 9:00 am

I have never heard of PCOS and I’m so sorry you have it! I’m sure it’s a relief to know what’s going on, and that your eating disorder wasn’t to blame, but I’m sure it will be troublesome in the future. But again, a relief! Haha mixed feelings I’m sure. I’m glad you had a good weekend with your family though!
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18 tessa8m September 24, 2012 at 5:17 pm

Katie, thank you.. it’s nice to know I am in the right direction with this at least

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19 Rebecca @ blueberry smiles September 24, 2012 at 9:15 am

I know a lot of women with pcos who were able to get pregnant easily- that drug that makes you ovulate really works, do don’t be too worried about the baby thing.

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20 Kaitlin @4loveofcarrots September 24, 2012 at 9:20 am

I am soo happy you got an answer finally!!! You must be thrilled! I had to take birth control to get my period back on track too, it eventually became regular but it took several months for it to do so, I am hoping it will help you! Wohoo on your kitty, you are going to have soo much fun!!

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21 sarah September 24, 2012 at 9:23 am

I am a lurker, but I need to jump in. I really don’t think it is PCOS. Women with hypothalamic ammenorhea often have lots of little cysts just like PCOS. Its just an effect of not ovulating for so long. Any woman with a history of anorexia or restriction is going to have it. Unfortunately, not many doctors know this and many MANY women with HA are misdiagnosed as PCOS. I hate to rain on your parade, but I would really REALLY hate that you get this diagnosis when in fact it may not be accurate. Women with PCOS often are already overweight, have high testosterone levels, extra facial hair, and insulin insensitivity. You do not have any of those. And, the fact that your hormone levels are normal is indicative of the fact that it is HA and not PCOS. If you want to talk to me more about this (I have been through it and know many MANY women who have gone through the same misdiagnosis and problem) feel free to email me.

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22 Kara September 24, 2012 at 12:55 pm

I believe that I was mid-diagnosed by my OBGYN as having PCOS as well. It wasn’t until I met with an endocrinologist that I found out what I have is more likely HA. I would love to hear more from Sarah about this. Karakohls at gmail.com

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23 Jess September 24, 2012 at 3:37 pm

This is actually true: you need both the hormonal profile AND the ovarian cysts to have PCOS. There are many women out there with small cysts on their ovaries – mine were picked up when I was sixteen, but I did not get a diagnosis until hormone tests confirmed it. Symptoms present differently in different women, but at the time I was indeed overweight (though not obese), had higher than normal levels of testosterone and abnormal androgen levels. I also have insulin sensitivity, though thankfully not facial hair.

It could well still be HA – most people with that DO have to gain up to a BMI of 22-3 which I know is not what you want to hear, but that’s the general trend.

Due to my ovaries messing up completely I had to have most of them removed when I developed a tumour that grew to a ridiculous size. Now my hormone levels are still all over the place, and the tiny fragment of ovary left still has small cysts – it was only left there because I was just 19 at the time, and despite my protestations to the contrary my surgeon concluded I might want kids some day.

I know PCOS is in some ways a more comforting diagnosis because it’s a get out of jail free card with regard to gaining more weight, but without the correct hormonal profile I am really confused as to how any doctor could think PCOS is the *correct* diagnosis.

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24 Becky September 24, 2012 at 4:52 pm

I would third this. I know the last thing you want to do is pay for another medical test, but I really think you should ask to have your hormone levels evaluated. Unfortunately, many doctors do not hormone test accurately–for women, you really need tests at a couple points during your cycle to detect any real issues.

It would be a shame to go on BC and further play with your hormones for something you don’t really have! At the least, I would bring this information to the doctor!

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25 tessa8m September 24, 2012 at 5:20 pm

Sarah (and to everyone else really) I had no idea about any of this… I do know a bit about HA but didn’t realize that cysts could be a symptom or result of such an illness. You are right, I don’t have any of those factors and things that are often seen in women. Hmm I guess I just assumed it was PCOS because the cysts were the tell-tale sign, but also that cysts only appear with the illness. I do very much appreciate you offering your help and will certainly email you when I get my head around this better.

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26 tessa8m September 24, 2012 at 5:21 pm

Kara, okay now you have me thinking as well! perhaps it is time for a specialist

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27 tessa8m September 24, 2012 at 5:23 pm

Jess, as always I appreciate your words here.. you so often offer great insight and also true, hard facts. First, I am sorry you have experienced any issues with all of this and that you had to get most of the ovaries removed.. that is intense lady :( But yep you are right it is a nice get out of jail free card in regards to gaining weight. HA was on my mind before the PCOS diagnosis, yet the cysts confirmed the latter. However, now I am beginning to understand that the cysts can be a whole different issue

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28 Mallory @ ifgravityhappens September 26, 2012 at 10:12 am

I completely agree…cystic ovaries and PCOS are a complete different thing. Definitely do some research on HA and you’ll probably nod your head at a lot of the causes/symptoms. I definitely think you are close to finding an answer though sweets!
Mallory @ ifgravityhappens recently posted..HA Update: A Means to an End

29 tessa8m September 24, 2012 at 5:26 pm

Becky- gahh I sooo do not want to pay even more for a medical appointment! I did have them tested at one point and they yielded normal hormone levels, yet I didn’t realize they could change throughout the cycle. I am most definitely considering your advice and everyone else’s here as well. I very much appreciate it ladies and will keep you updated! Thanks again

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30 Amanda September 24, 2012 at 8:27 pm

Hi Tessa, I follow your blog but don’t usually comment, but as a medical student I just wanted to chime in that there are a few simple blood tests that can clarify if you have PCOS. They can look at your LH and FH levels and ratio, as well as testosterone and DHEA-S to see if you do have the androgen excess component. Good luck with everything!

31 tara September 27, 2012 at 7:53 pm

Hi Sarah,

I too believe that I was misdiagnosed with PCOS. I have a history of anorexia. I would love to hear more about what you know. Do you mind emailing me at tarasadeh@gmail.com?

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32 Kat September 24, 2012 at 9:28 am

They def thought I had that as well, but my hormone levels were fine. I am on birth control to control the cycts that I get now, and all my blood test levels are good. I dont know about you but mine are extremely painful, so they put me on a pill that only gives me 4 periods a year. Id much rather be in pain 4x a year than once each month!
Hang in there lady. So sorry for this frustration!!
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33 tessa8m September 24, 2012 at 5:26 pm

Oh yes I can’t blame you for that Kat!

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34 Ashley @ My Food 'N' Fitness Diaries September 24, 2012 at 9:31 am

I’m hesitant as to how or what to say here because I am obviously NO doctor and don’t at all expect to be treated like one, but just want you to be aware of something. Many women that I’ve come into contact with that have hypothalamic amenorrhea were not initially diagnosed with HA but were diagnosed with PCOS because it is more well known among doctors, whereas HA is not. It sounds like the ultrasound truly confirmed PCOS, but just wanted you to be aware that HA could be a possibility on top of PCOS as you think about kids down the road. I just wanted to share what I’ve learned through my journey to help you. I’m happy you got some answers though! Great news!
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35 tessa8m September 24, 2012 at 5:28 pm

Hey Ashley! Your advice her is certainly welcome and you are not the first person on here to offer this separate issue and bring up the HA. I simply had no idea that you could be diagnosed with PCOS before getting to the real issue that must be addressed, HA. Now that I have been reading about it throughout the day and how PCOS is connected, I am thinking that you and others that are suggesting something similar could likely be right. Thank you so much for your help here

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36 Laurie @ Love, Laugh, Laurie September 24, 2012 at 9:51 am

So glad you figured out what is going on and that you have some answers! Hopefully birth control will help and things will get even better!
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37 Tracy September 24, 2012 at 9:54 am

Victoria Beckham and I are the only two I know with it. And we are both managing it just fine- which you will too :)

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38 tessa8m September 24, 2012 at 5:28 pm

Haha good to know :)

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39 Alex @ therunwithin September 24, 2012 at 10:01 am

I am just happy you have an answer because that means keeping it under control can happen with that much more ease. I am so happy to hear this, seriously made my day. I don’t know what the treatment looks like but I hope it isn’t that bad. Love the improv of candle sticks, made me giggle.
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40 tessa8m September 24, 2012 at 5:30 pm

Haha yeah we couldn’t believe no one had remembered to bring them! Whoops my bad

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41 Dorsa @ Running Thoughts September 24, 2012 at 10:25 am

ahhh I am so happy you finally have an answer!!!
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42 Amanda @ .running with spoons. September 24, 2012 at 10:32 am

Oh Tessa, I’m sorry to hear about the unfortunate news that you got, but at the same time I’m sure you must be a little relieved to finally have some answers. I wish I could offer you some more info on PCOS, but I don’t know much about it because I don’t know anyone who has it… At least now that you know what the problem is, you can start working towards treating the symptoms and getting it under control, though.

And to end on a positive note, your weekend looks like it was really awesome! I did some Fall inspired baking this weekend, so definitely started to work on some things on my bucket list. And I can’t wait to meet Caleb!
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43 tessa8m September 24, 2012 at 5:35 pm

Yay for fall festivities! What did you end up baking? I am going pumpkin bonanza but perhaps more apple desserts need to occur too :)

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44 Laura @ LauraLikesDesign September 24, 2012 at 10:34 am

I’m so happy to hear that you finally have some answers! Sometimes the unknowing can be worse than the actual diagnosis because we immediately fear the worst! Praying that your symptoms improve and that the BC gets everything back into a rhythm.
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45 tessa8m September 24, 2012 at 5:37 pm

Laura, thank you for the well wishes pretty lady :)

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46 Ben September 24, 2012 at 11:19 am

1.) I think one of my friends has PCOS, but she was diagnosed in middle schl in the late’90s and I haven’t heasrd anything since then, so IDK.
2.) My wknd was GREAT! Went from CT to DE to see some family, SAT-Sun. and on Friday found out my cousin is Preggers w/her first!
3.) Good luck wityhh your new condition. Like I say, “tough times never last, but tough ppl do!”

Take care,
Ben

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47 Christine September 24, 2012 at 11:20 am

My best friend has PCOS (ultrasound showed cysts) and her doctors told her she only had like a 10% chance of getting pregnant. She hardly ever got her period and so her and her husband started trying a few months ago because she thought it would take a couple years. She is now almost 4 months pregnant (literally they got pregnant on their 2nd try)!! Hopefully that eases your mind a bit about pregnancy and lack of a regular period =)

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48 tessa8m September 24, 2012 at 5:40 pm

Aww good to know Christine, thank you for this! Congrats to your best friend too :)

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49 Allie September 24, 2012 at 11:20 am

You got your answer! SO glad to hear it (okay, not glad that you have PCOS, but that you know what’s going on!).
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50 lindsay September 24, 2012 at 11:26 am

glad you have an answer but sorry it’s PCOS. I have clients/friends with that. Luckily you know what to do and can get through it!!
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51 tessa8m September 24, 2012 at 5:42 pm

Exactly Lindsay!

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52 Liz @ Southern Charm September 24, 2012 at 11:28 am

I’m so glad you found out what it is and that there is something you can do to help with it! I’m sorry it’s PCOS, though.

And my weekend was good. I flew the Dallas to spend the weekend with my bestie and her baby!
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53 tessa8m September 24, 2012 at 5:44 pm

Aww so fun! I hope to go to Dallas one day, I’m sure this is a pretty nice time of the year to go

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54 Chelsea @ Chelsea Runs September 24, 2012 at 11:30 am

Tessa, I’m so glad you finally have a diagnosis! Obviously, it’s not an ideal situation to have PCOS, but at least you can treat the symptoms and understand what’s happening in your body. I know a friend who has PCOS, and she deals with it. I’m glad you had a great weekend too! AND YAY GETTING THE KITTEN! I was literally just wondering how that was going. I can’t wait to see pictures! :)
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55 caloricandcrazy September 24, 2012 at 11:53 am

Yay for finally getting an answer! I hope everything works out well!
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56 Allie September 24, 2012 at 12:11 pm

I’m so happy you got an answer to your problem!! I have heard of PCOS and I had the same thoughts as you, I thought only overweight women suffered from it. You learn something new everyday though I guess! I’m glad you are now on track to managing it.

I can’t wait to see pictures of Caleb!
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57 tessa8m September 25, 2012 at 5:20 pm

Yep exactly Allie! And thanks :)

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58 Bianca September 24, 2012 at 1:05 pm

I’m going through the same thing right now. I have once before in the past. Don’t worry about how much weight you “have to gain.” Your body knows what it is doing – trust it, eat as you normally would. You’re at a healthy weight now, but it doesn’t come back in an instant.
When I first had ED and lost my period several years ago, I weight-restored back to my original weight, and it took over a year after that to get a regular period back.

I suggest visiting the forums regarding “Health & Support” on caloriecount.com. There are tons of people going through the same thing, and many who have overcome and readily share their insight.

That said, everyone’s experience is different. Loss of ones menses, from what I’ve gathered, is one of the residual symptoms of ED. Long after you’re out of the danger zone, its absence is a reminder of the damage you’ve done.
You don’t need to gain any weight. Just be healthy and be happy. Your body will give you this bittersweet gift eventually.
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59 tessa8m September 25, 2012 at 5:20 pm

Hi Biana, thank you for the tips here and also that support forum! Back in the day I did do some lurking on that particular board and yes, it was helpful… I just had to sift through some of the more triggering ones ha. I find the well-wishes helpful Biana, thank you

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60 Maddie September 24, 2012 at 3:18 pm

I was diagnosed with PCOS at age 15, both because of the same two symptoms that you had. I’ve been on birth control for 5 years now with no issues, so I hopefully that makes you feel a little better:)

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61 tessa8m September 24, 2012 at 5:51 pm

It does Maddie thank you!

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62 Lisa September 24, 2012 at 4:09 pm

I’m so happy to hear that you found a diagnosis, but also sorry that you have to go through this.
At least you know tips on how to get through it and control it to the best of your ability! I don’t know much about PCOS, but I know you’ll be able to manage it and just keep your spirit bright! xox
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63 Lisa September 24, 2012 at 4:14 pm

Oh, I forgot to add. Is a symptom of the PCOS fatigue? Is this another reason why you were feeling fatigue in your legs and in general, or is this just another issue from the ED past. Just curious;)
Love you!
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64 tessa8m September 25, 2012 at 5:22 pm

I did see that fatigue was part of the symptoms, so maybe the BC will help with that as well! Anymore progress for you in that department?

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65 Lisa September 29, 2012 at 5:58 pm

Hopefully that helps! No more progress at the moment. I’ve been getting more crampy ha ha. So hopefully that means progress! I’ve also upped the calories a bunch, so I’m hoping things will start healing!!
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66 Laura @ Happy Sugar Habits September 24, 2012 at 4:25 pm

Hi Tessa, I am new to your blog and have never heard of PCOS but took interest reading your post. I had an ovarian cyst a few years ago and had to have a whole ovary and tube removed. I was meant to go for annual scans but I haven’t bothered which is bad of me I know, however after reading this post it may be a good idea if I do. I am glad you have found out exactly what it is now and really understand. You post was great at explaining it to me and hopefully I am inspired not to be as scared whatever I might find out from a scan. Laura :)

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67 tessa8m September 25, 2012 at 5:18 pm

HI there Laura! So glad to know that this information here was useful to you! If you do decide to go for those tests, I hope they yield the results you want!

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68 Erica @ For the Sake of Cake September 24, 2012 at 4:35 pm

I’m glad that you finally got a diagnosis! I know how frustrating not knowing can be, so at least you have somewhere to go from here!
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69 Bec September 24, 2012 at 4:39 pm

I’m so glad you have an answer! I’m so sorry it’s not the happiest of answers but at least it is one. I had the same tests done last year because I was having similar issues even on birth control, and they we worried they would have to operate on me. Fortunately while I did have some cysts everything turned out ok. It was mostly stress and bad diet contributing to unbalanced hormones. Whatever it is that has contributed to yours I am sure you will power through it. You’re so brave and so strong that whatever happens will turn out fine. Hope you’re ok x
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70 tessa8m September 25, 2012 at 5:22 pm

So glad everything turned out okay Bec, that must have been scary :(

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71 debbie September 24, 2012 at 4:58 pm

I am new to your blog and I just want to say I am glad that you finally have an answer, although of course it is so sad that you have this disease. I remember when I was sick with anorexia how nerve wracking it was to not be able to get my period back, and I can’t imagine going through that for FOUR years. I’m glad you had it figured out. Take care of yourself!

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72 tessa8m September 25, 2012 at 5:18 pm

Hi Debbie! Thanks for stopping by and the well-wishes! It really is a relief to know I am indeed on the right track

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73 Becky September 24, 2012 at 5:05 pm

Hey–I posted about my concerns with your diagnosis above, but I wanted to take an extra minute to share based on my own experiences.

I have really found that when it comes to gynecological health in particular, you need to be very proactive because doctors do not always know what’s up. I had an issue that was misdiagnosed several times before actually figuring out what it was (endometriosis). What frustrates me about this and your situation is that the doctors never bother to test actual hormone levels, which are the key to many gynecological problems–they’re often happy to choose the “easiest” diagnosis without doing the back-up work.

Anyway, a second opinion can’t hurt (aside from your pocketbook!!! which is very painful, I admit!!!). If you DO end up with definitive proof that this is PCOS and not HA, there are also alternative treatments that don’t necessarily involve birth control, if you’re interested in avoiding it!

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74 tessa8m September 25, 2012 at 5:16 pm

Hi Becky! You are right about this and there are so many different symptoms that equal something else that it’s of course hard to figure out what the exact right diagnosis is. Although I feel like they should be able to ha? Anyway, I did get my hormone levels checked and apparently they are within the normal levels.. the FSH and the other one. I am trying to figure out ways now on different methods to confirm… I will keep you updated! Thanks for the input here :)

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75 Linz @ Itz Linz September 24, 2012 at 5:11 pm

family time is so fun! i’m glad they finally figured out what’s going on with you! and i’m glad it’s not more serious. :) take care girly!
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76 tessa8m September 25, 2012 at 5:17 pm

Me too Linz!

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77 StoriesAndSweetPotatoes September 24, 2012 at 5:44 pm

Holy crap that makes a ton of sense. I don’t know much about pcos but I have heard about people managing it well through nutrition (yeah I mean paleo lol) in case meds don’t work out fully. I hope this is an easy fix for you! :)
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78 tessa8m September 25, 2012 at 5:25 pm

Thanks a lot for the well wishes!

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79 Annette@FitnessPerks September 24, 2012 at 6:37 pm

YAY for answers & an explanation! WHEW! That is aweosme to know what is going on. Blessings & prayers your way <3

I remember being so frustrated because I never got answers. I just didn't have mine for 7 years….and it magically came back 1 month after meeting my now husband. I think it was a combo of my messed up hormones/eating disorder & being super stressed about everything. He calms me down, and my BODY knew it. Crazy, eh?
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80 tessa8m September 25, 2012 at 5:26 pm

Oh wow 7 years and it still came back… how awesome our are bodies huh? But that is so wonderful, meant to be for sure :)

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81 Jillian @ DNAandDessert September 24, 2012 at 6:52 pm

This is my issue too. I have PCOS and my OB was completely taken aback because I’m not the typical obese patient, etc. Anyways, I think the hardest part for me was the “you’ll likely need help to have kids” part. I’m a genetic counseling student too so I knew that line was coming but it wasn’t easy to hear none-the-less. I’m glad you finally have an answer. I remember that relief when I was diagnosed a month and a half ago.
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82 tessa8m September 25, 2012 at 5:27 pm

Oh yes you are more aware then with that student status. So glad you have a diagnosis too.. we will both make the best of it!

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83 Chelsea @ One Healthy Munchkin September 24, 2012 at 7:09 pm

Ahh I’m so glad you finally have an answer! That must be such a relief. And it must make you feel so good to know that your lack of a period these days wasn’t because you weren’t recovered enough. Because you have done such an amazing job at recovery and if it weren’t for this PCOS, I’m sure you would have gotten your period back naturally. :) I don’t know much about PCOS, but I hope it’s easy for you to manage!
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84 Sam @ Better With Sprinkles September 24, 2012 at 7:55 pm

I almost jumped up and did a cheer, but the dog currently sleeping on my lap wouldn’t have been too appreciative. :-p

I’m so freakin’ happy for you Tessa! I know that’s not really the best news ever, but NOW YOU KNOW. That must be such a relief. Now you know what the issue is and you can do what you need to do to deal with it. I don’t know much about the issue or how to treat it, but I know you got this. :-)
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85 tessa8m September 25, 2012 at 5:28 pm

Haha nooo the pups might have been slightly pissed ;)

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86 laura September 24, 2012 at 9:49 pm

Thank-you for sharing this Tessa, & I am glad you finally got some answers! I’ll be honest and say I am in the same situation as you were ( 4 years of amenorrhea) but have yet to see a gynaecologist. I definitely need to look into this instead of ignoring it and putting it off. :/
So excited for you to get Caleb, he’ll be a bundle of joy! :)

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87 tessa8m September 25, 2012 at 5:28 pm

It’s so hard to mentally address this… but it was causing me so much angst, I felt that I had to at this point. But if you do decide to, it could really help!

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88 Laura @ LauraLivesLife September 24, 2012 at 10:11 pm

I’m so glad you have an answer – no matter what the answer is, because you can do something about it! Glad you had a good weekend!
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89 tessa8m September 25, 2012 at 5:14 pm

Thanks Laura!

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90 Khushboo Thadani September 25, 2012 at 3:52 am

So glad you have found a diagnosis to your problem…at least now you can take the steps to fixing the issue! I actually was diagnosed with PCOS a few years back, apparently it’s common with those of Indian ethnicity. My gynac put me on the pill to restore the size of my ovaries and fortunately my conditioned has improved a lot. However, part of me kinda regrets taking the pill because it’s created a whole range of other issues for me- don’t mean to scare you but just try not to take the pill consistently for long periods of time (which I did).

Hiking looks like a blast! i wish we had some trails nearby- such a fun (and active) way to spend time with family!
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91 tessa8m September 25, 2012 at 5:14 pm

Aww I am sorry you have experienced this too and had issues with BC! I have been on it before so it should be okay, but good to know about the length of time to stay on it

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92 Kat @ a dash of fairydust September 25, 2012 at 6:02 am

Oh gosh,Tessa,I am SO happy for you! It’s so great you finally know what’s wrong with your body because now,you can do something against it. Also,I know how constant worries can be very stressful and frustrating to say the least,so I’m glad you got this off your chest finally. :)
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93 Brittany @ GOtheXtraMile September 25, 2012 at 9:18 am

While I am so sorry that you have this condition, I’m sure it feels great to know what is actually going on. It is honestly the worst when doctors cannot figure out what it wrong with you. Similar to my gut issues, they just tell me it is “IBS” because basically they don’t know what is wrong. Frustrating! But, I’m glad you have the answer!! :D
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94 tessa8m September 25, 2012 at 5:13 pm

Gahh that is so frustrating! I hope you are on your way to an answer Brittany!

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95 Kelly@ShapeDaily September 25, 2012 at 9:30 am

Well, even if it isn’t the best news at least you have an answer and can start taking steps to improve your condition and get your period back. Imagine if you had skipped the appointment and still had no answers? I love hiking! I don’t know if you’ve ever been to Blue Hills, but its right in my hometown of Canton and there’s a great place that you can see Boston from at the top. Its a couple of feet short of a mountain, so its not a terrible hard hike, but it is a lot of fun and a really great fall activity! I didn’t do anything this weekend too out of the ordinary, but yesterday-Monday- my friend and I did a CrossFit class! I am so sore today but it was reallllyyy fun…Glad you finally got some answers (and a Dr.’s appointment worth the $$$)
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96 tessa8m September 25, 2012 at 5:12 pm

I have never heard of the Blue Hills before, but thanks for the heads up on it! Canton is not too far and I foresee hiking there sometime this fall… :)

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97 Rachel @ Eat, Learn, Discover! September 25, 2012 at 11:34 am

I literally *just* got a call from my doctor last week with my bloodwork results, which say I have PCOS (talk about ridiculous coincidence/timing). I haven’t done the ultrasound, but my hormone number was so high that my doctor doesn’t even think an ultrasound is necessary. As much as I *hate* to go back on BC, for me, I think it is necessary for my long term health (bone health, other complications in the future). My amenhorrea started years before any weight loss/gain issues, so I’m pretty sure this is indeed what is happening with me. It’s a mental battle more than anything, but we have to do what we need to get the body working the way it should!
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98 tessa8m September 25, 2012 at 5:11 pm

Ahh seriously what timing indeed… and I am sorry you have this Rachel :( This is a mental battle but yes, we can get through it for sure. Keep me updated and I will for you too!

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99 Sara @ The Foodie Diaries September 25, 2012 at 11:43 am

TESSA I’m so so happy that you’ve finally figured out what’s going on! I know how stressful and frustrating this has been for you, and I’m glad that you finally have some answers. Thinking of you and hope everything goes well with the BC <3
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100 tessa8m September 25, 2012 at 5:11 pm

Thanks dearest Sara!

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101 Jemma @ Celery and Cupcakes September 25, 2012 at 2:25 pm

You must feel so relieved to finally know what is going on.
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102 Sarah September 25, 2012 at 3:20 pm

As an old reader it’s good to be back to your blog. I have to say I’m ‘glad’ I’ve stumbled upon this post. First off, power to you. That is not an easy road to be on, trust me I know. Now that you have a clear diagnosis I know you will make the best of this all :)
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103 tessa8m September 25, 2012 at 5:10 pm

Hi there Sarah, thank you for popping in to say hello and offer support! It means a lot :)

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104 Sloane Pitman September 25, 2012 at 5:46 pm

Just saw that this post has 100 comments…Imma add mine anyway!
My sister has POS! She discovered this a couple years ago, and we were all pretty shocked because 1) she was pretty young…16 at the time and 2) she’s a normal weight too. But she’s doing really well. As far as future fertility treatments…they’re in hers and mine too most likely. Though I don’t have POS, I do have some weird uterus issues that have been exacerbated by years of bodily abuse. Awesome. Apparently Arden and I got my Dad’s side of the family fertility genes instead of my mom who somehow conceived us both without even trying.
Anywayyy I was also struck by your “how much of this is my fault?” question. I feel like every time I get a new medical condition that’s always my first question. Its pretty humbling when you come face to face with the realization that you caused serious harm to yourself. Definitely a motivation to stay healthy.
Good luck with the BC search…my best advice is to be patient. It can take a while to find the right one, and its a frustrating process, but definitely worth it.
Can’t wait to see CALEBBBB OHH MY GOSHHHH
xoxo
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105 tessa8m September 27, 2012 at 9:23 pm

Oh gosh yes that question is forever in my mind it seems. But yes, we must hold onto the fact that we could have caused much of this in order to allow the progression of recover to keep on occurring

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106 Rach September 26, 2012 at 5:17 pm

So I’ve already read your next post about you thinking that this could actually be HA and not PCOS, but just in case it IS PCOS… I thought I’d throw out my two cents.

Over Christmas my 2nd oldest sister found out she had PCOS. We thought the condition sounded vaguely familiar and sure enough we realized that it was the same condition that my youngest sister was diagnosed with several years ago when she was still a teenager. They were telling me their symptoms when I realized that I shared some of the same ones. I went to the doc in January just to rule out the possibility and then low and behold… I had it too, haha! Later that month I was talking to my oldest sister (who lives overseas) and found out that SHE has it too. All four of us have it. I still think that’s Cah-razy! I know that it’s a fairly common condition AND that it runs in families, but c’mon, all four of us?! Weird. Haha! Plus, we were all diagnosed with it when we were at a normal (or even low) weight/BMI. And all by different doctors over a period of several years.

Both my older sisters had trouble getting pregnant (one took the pill that helps you ovulate and she got pregnant pretty quickly after that and the other opted for no drugs and took a few years longer than they had hoped) which can be really discouraging, but the good news is that they both have two precious kiddos now! :) Plus when I found out that I had PCOS I was also finding out that I DIDN’T have a tumor on my pituitary gland so that was really good news. :) Anyway, I’m not sure what your second opinion will show, but if you DO have PCOS – know that you aren’t alone. :) I’m here for ya anytime (even if you don’t have PCOS, haha!). :)
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107 tessa8m September 27, 2012 at 9:22 pm

Wowww that is crazy that it effected ALL of you ladies! Seriously, sheeshe! So glad that you all did follow up with the possibility of this illness and are getting various treatments and giving it attention that it needs. Thanks for sharing this with me Rach

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108 Sonya September 26, 2012 at 5:57 pm

Hi Tessa,
I haven’t read all the comments so I am sorry if I repeat anything, but I have PCOS (as well as anxiety and other issues that are connected to to hormonal imbalances) and didn’t get a period for close to 8 years during my twenties (34 now). I found acupuncture and chinese medicine hugely beneficial in balancing this and getting my cycles regular, without the need for presciption medicine or the BC pill. Good luck!!!

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109 tessa8m September 27, 2012 at 9:21 pm

Thank you for the input here Sonya! I do often consider more holistic style ways of healing, so I appreciate this recommendation! So glad you have found it to be beneficial for you

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110 Jessie September 27, 2012 at 8:06 am

Oh Tessa I am so happy they have finally found out what has been going on w/ your body! What a sigh of relief. Is it weird that I’m literally smiling so big for you as I type this??
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111 Kathleen @ KatsHealthCorner October 1, 2012 at 12:13 am

I’m so sorry about your PCOS. :( I know how you feel. I haven’t had my own period (without the help of BC pills) for almost 3 years now. (Wow — has it really been that long?!?! :() The doctors could never find out what was going on with me, because all of my hormones are normal, I’m at a healthy weight, I don’t exercise more than an hour a day 4-5 times a week, and I eat plenty of healthy fats. I had it for over two years before it just suddenly stopped, and I haven’t had it on my own since. I’ve taken the BC for about a year now (so I at least have it), and right now I am taking a month off to see if my body can do it on it’s own. (My fingers are crossed! I really hope it works!) I think I would literally cry if it happened.
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