Hail, cysters!. (A thread for those with PCOS)

Miscellaneous and Personal Stuff I Must Share
21

Hi Phouka,

Glad you started it…

I yanked the first hair out of my chin when I was 15. I am currently on Actos, which I like waaaaaay better than the glucophage. I have no side effects from it and it has not been connected to liver or kidney damaage. Ayesha, it’s a fairly new drug, you may want to have your endocrinologist research it for you. I don’t know how it would mix with the hep stuff.

Falcon, I believe a syndrome is defined as a group of symptoms, so if you’ve got a few of them, you’ve got the syndrome. (also, we’ve never really crossed paths, but I’ve been reading you for a while, and I must agree with all the fab things Phouka said)

I am also low carbing. I pretty much let it go over the holidays, but I’m trying to get back on track. I try to be realistic about it and plan to have an unmonitored meal every week or two, just to maintain sanity and a social life. What I’ve been doing tracks closest to the Eades’ protein power, no more than 10 grams of carb per meal or snacks, for a total of 40-50 per day. Eating this way, along with the Actos and walking or weights 3-4 times a week has dropped me from a size 28 in August to hovering between a 22-24 right now.

I’ve been on the pill since I was 18, but I have gone off a few times over the years, mostly because I was lazy or broke. I never got a period in the off times, but I decided to try going off again a couple of months ago to see if the weight loss and diet change had helped, and I’ve now gotten two periods. I swear to god I haven’t had cramps like this since I was 13. I also have never been so freaking happy to have them. I don’t necessarily want to have them again any time soon, so I’m going back on, but it was very cool.

22

Hey all,

For those of you interested, I’m thinking of starting a Teeming Cysters email group so we can keep in touch and share news/info/emotional support. Let me know if you want in.

Zyada - not sure what you were asking about cholesterol. As far as PCOS goes, high cholesterol is a problem. Due to the screwed up hormones, women with PCOS tend to have cholesterol, blood pressure, and heart disease stats more like men their age. It’s really hard on the cardiovascular system. As far as low carb dieting goes, that is a problem. Low carbs tend to focus a lot on protein, and red meat is one of the easiest sources to get to. It’s also really easy to up your intake of saturated fats and cholesterol when you’re avoiding carbohydrates. I just don’t get the people who switch out potato chips for pork rinds.

Ayesha - I feel for you, hon. Sometimes it seems that in order to untangle the complex of symptoms that is PCOS, one ends up doing just as much damage to other parts of one’s body.

Falcon - I have never tested out of range on my glucose, but I’m convinced that I’m hyper-insulemic/insulin resistant. I get hunger headaches very easily. If I’m not careful about eating regularly, my blood sugar gets low and I get very cranky and fuzzy headed. I also have a lousy family history for diabetes. The root cause of PCOS is the same as the root cause of diabetes. Doctors have called it Syndrome X in order to describe the problems caused by insulin resistance and hyperinsulemia - PCOS, diabetes, heart disease, hypertension, high cholesterol, and more. They’re finding more out about it every day. My old doctor back in Dallas was fantastic. If you like, I’ll call her and see if I can’t get some recommendations for a doc in your area.

Palmyra - there is a link between PCOS and endometriosis as well as endometrial cancer. Also, both of them are known causes of infertility. I wouldn’t wish either of them on my worst enemy. I’m glad to hear your friend didn’t have endometriosis.

So, ladies, let me know if you’re interested in an email group so we can continue to keep in touch.

23

Yeah, I’d be interested in an email group. And on any recommendations your doc would have, phouka.

24

I’m in for an email group, Phouka.

25

Sign me up! Thanks, phouka.

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I haven’t been diagnosed with PCOS but my Family dr mentioned it to me as a possiblity. I went off birth control earlier this year and stopped having periods in September. I have a lot of similar symptoms - high cholesterol, overweight, skin tags, brown spots on my ankles/feet, really awful acne, irregular periods and trouble conceiving. I went to an ob/gyn and he decided that I didn’t have PCOS and that I have a hormonal imbalance only. He put me on a progesterone. I got a period atleast. I will talk to my family dr again soon.

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Yay! I’m happy the email list is happening. Those of you wanting more information should check out http://www.pcosupport.org - they have a ton of information and links to local support groups that may be able to help you search for an R.E.

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Another cyster here:
FYI, you don’t neccessarily(sp?) have to have all the symptoms to have PCOS. I can’t even believe I found this thread. I have know I’ve had PCOS for years but it never really affected my life. Every pelvic exam the docs would feel a cyst, I would have the ultrasound and they would see NADA. I even had an MRI a few years ago. It didn’t seem to be effecting my life so I ignored it. Now, in my mid 30’s, its become a problem. If you have even TWO of the symptoms, go see your OB/GYN or an endocrinologist (?) My OB/GYN had been trying to get me to go to a specialist for years and I blew it off.
I finally went and had the blood work done. Everything came back within normal limits. I ask my Doc if that meant I didn’t have PCOS and she said no, she’s positive I do. (I haven’t had the fasting glucose tolerence test in ten years, but she seemed pretty damn sure) I see that a lot cysters seem devastated by the diognosis, but PLEASE, think about it this way…I am a recoved bulimac, on heavy doses of anti-depressants,years of therapy, PMS that could make Sylvia Plath look like a opptomist. Finding out for sure that I have PCOS was like having a huge weight (no pun intended)lifted from my shoulders. I finally felt like I wasn’t crazy, and that I would eventually end up in an institution. There was a real, organic reason for my depression and weird mood swings etc…I’m happy I have it, well not happy to have it, but happy to know. Sorry to blathered on so long.
BTW-If the facial hair is a huge problem, I HIGHLY recommed laser treatments. My face was burnt, and covered in scars and ingrown hairs from electrolysis and my own plucking, I wanted to die. Not only does the laser removal and thin the hair, it removed all the discolorations and I can’t believe its the same face. If someone has a website I can post pictures at, let me know.
I have some before and after pictures that will blow you away.
Chin up Cysters, life can be good!

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another BTW- put me down for that mailing list! And low carb high protein diet seems to working pretty well.

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Hi Shay, I agree with you about having that weight lifted. It’s so much better to know what it is and to be able to start doing something about it.

I had such huge problems with hair ten years ago that I actually went back to trade school and became an electrologist. I’ve closed my practice now, precisely because the lasers are here, and they work. I had Epilight done on my face and neck last year, now I need to go in for touchups every six months or so, it costs me about $100 each time now. Epilight is not a laser, it is pulsed white light, so it picks up a great range of hair and skin colors. It is not any more expensive than electrolysis and the time commitment and pain is so much less. A good operator can do in about 20 minutes what would take me 2 hours a week for a couple of months to cover as an electrologist.

I’m looking into Vaniqua to see if that will help stretch out the touch ups to once a year or so.

31

Put me down for the mailing list, too.

My problem right now is I’m not working, so I don’t have medical insurance, which sucks.

Personally, the worst part of PCOS is the facial hair–I get waxed twice a month just so I can feel like facing the world.

32

Okay, ladies, I have set up an email group for us. The address is cysters@egroups.com. An invite has been sent to everyone who asked for one as well as a few who haven’t.

Falcon - I will get ahold of my doctor in Dallas on Monday and see if I can’t get that info from her faxed out here. You’re in the Washington DC area, right?

Take care!

33

Close enough, phouka…I’m in Columbia, Maryland.

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    • Random bump to see if anybody else is interested in the list - -
35

Sorry I didn’t get back here sooner. Yes, I am interested in the mailing list, and I’ll go in just a second and check to make sure my e-mail is available.
The next week is kinda nutty for me though, so I probably won’t be reading any sort of e-mails, apart from work.

I don’t think I’ll have access from Honduras, and then I’ll be up in DC(actually, to be honest, Columbia, MD) for the weekend.

36

I forgot to mention, if there are any Cysters in the Chicago area who need a doc, I have a great reproductive endocrinologist (she also has PCOS) and she has offices in both the city and the burbs

37

I don’t have hair problems but, lord, is my cycle messed up. I’m also very fat. My friends and family wonder how I can be so big when I eat the same (or less) than they do. I always thought it was lack of exercise. I once went to a nutritionist with a book in which I carefully noted everything that passed my lips for a month. She thought I was lying.

My cycle is way, way off. My period does not come for six or seven months at a time. When it does come it won’t go away. I’ve had 6 (that’s right six) d&c over the past 8 years. My gyn has never mentioned PCOS. She says my weight is causing a hormone imbalance.

My gyn put me on the pill even though I explained that I want another child (I’ve got 4 years to go before I’m 40 and taking the pill is not going to help). I’ve been not taking the pill for over a year now and I’ve just about given up on that kid.

Thanks phouka for the thread on which I can vent.

38

My oldest sister was diagnosed with this a few years ago. Her case is so severe that she will need a hysterectamy; really, she needs it now, but they’re trying to postpone it until she turns 40 (she’s 35). She is now infertile (she did have two children, fortunately), and has developed diabetes as a side effect of the PCOS.

She is strongly urging both my other sister and I to get a vaginal ultrasound; according to her doctor, that is the only way to diagnose it. My middle sister has had a lot of problems conceiving, and I do have above-average amounts of body hair (really nothing on the face, though). However, the oldest sis always had serious problems with her mestrual cycle–it was always irregular, and always seriously painful…plus her hormones would be so out of whack you’d think she’d gone insane. She would regularly pass out and/or vomit with each cycle.

I’ve always been regular, but the last period I had prior to being on the pill I passed out (several times over about an hour or two), vomited, got diarrhea, and basically my blood pressure dropped off the scale. That was it, I decided. I’m going on the Pill. I did, and have had no problems since. I did gain about 10 pounds, mostly in the belly (dammit!), but there’s been no other significant weight gain.

Endometriosis: This condition is all over my family. My mom, aunt, and grandmother all had it, and all had hysterectamies for it. Palmyra, you’re off just a touch…in endometriosis, tissues outside of the uterus build up and swell, as do the tissues within the uterus, with each monthly cycle. But, the uterine tissues are expelled with menstrual flow; the other tissues, well, have nowhere to go. What results is a build up of tumors and scar tissue…when my mother went in to have her tubes tied, the doctors encountered so much scar tissue that they couldn’t find her fallopian tubes. That turned into a much longer hospital stay.

When they put me on the pill, the concern was endometriosis. The doc said it is a condition quite difficult to diagnose under age 30 (and really, she added, under age 40); putting me on the pill would regulate my cycle and if I had endometriosis, it would put it in remission. From what I’ve read, the Pill has a similar effect on PCOS.

My only concern is that I be able to conceive in a few years, when the Llama and I decide to start creating our little army of RuffLlamas. :slight_smile:

When I get my pelvic and pap next week, I’ll ask the doc about PCOS and share what my sis said. Who knows, I may be a new member to your club. Hope you’re not insulted that I really hope I’m not! :wink:

39

I don’t have PCOS. I just wanted to mention, that if you have many of the symptoms of PCOS, and your doc says you don’t have it, you may have Non-Classical (or Late-Onset) Congenital Adrenal Hyperplasia. It has all the symptoms of PCOS, is less filling and tastes great! No, actually it sucks. Symptoms are hair loss, facial and body hair, irregular periods, infertility, weight gain, insulin resistance, etc. PCOS and LOCAH are very similar.

LOCAH can be diagnosed with a blood test known as “ACTH stim test.” A baseline blood test is taken, adrenaline is adminstered, and then two more tests are taken over the course of an hour. People with LOCAH have low levels of cortisol in their bodies and higher levels of testosterone. It’s important to know if you have LOCAH because cortisol is produced by your body to help you handle stress (like high fevers for example). If your cortisol level is too low, you could get very sick or you could die. If both you and your parter have the gene for LOCAH, it will be passed on to your children.

Just a little information for those who have symptoms but have doctors who claim they only have a “hormonal imbalance.”

It’s nice that you’ve set up a support group for “cysters.” The LOCAH support group is at CAHSisters on e-groups.

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Please add me to the list.

Ceejaytee, Thanks for the information. I will ask my doc about this. It couldn’t hurt.