Register for PCOSupport Chat - July 26, 1998
Kotag I was just diagnosed
in April, but not sure the diagnosis is right. I have questions.
Ladyzar Ask them.
Hormonelady I was never diagnosed...
Ladyzar how were you diagnosed?
Hormonelady ...officially that is.
Kotag OK, first one, I had twins about 19 months ago, and from what I can tell, a big thing is fertility. I don't get how it could all come on after I have twins, with no problems getting pregnant.
Ladyzar I mean, did they do an u/s or laparoscopy?
Kotag I had all kinds of tests done, hormones, and all that. I had a laparoscopy after my first son, about 8 years ago and it came out fine. But I have hair on my chin and can't lose weight and after I had the twins I had very weird periods.
Ladyzar That sounds normal for PCO.
Kotag It can just come on all of a sudden like that then?
Ladyzar Yes, I have had PCO for 12 years and they just found it 2 1/2 years ago.
Kotag Oh, okay then. Another question is about the insulin resistance, I took a bunch of stuff off the net to the dr and he said not to believe everything I read, but I saw an article the other day about it and now I'm worried, should I be?
Kotag Yikes, that's a long time not to know anything.
Ladyzar You will find that your doctors don't really know that much about PCO.
Kotag Especially the military drs that I have to see, we don't have gynecologists on this base, it's very small.
Ladyzar Where are you based?
Kotag We're in Japan for a few more months.
Beth822 Well, I'll just hope this works....first time for me in an ichat room and first time talking with people about pcos. I'm very interested in getting others input.
Ladyzar Oh, I live near Ft. Campbell, KY.
mary_s It's nice to have others to talk to about this Beth :)
Kotag Is the insulin resistance something to worry about?
Ladyzar Well, just jump in Beth.
Ladyzar I don't know about that myself.
Ladyzar Mary, I am now having problems again even though they put me into chemical menopause?
mary_s Lady, what kind of problems? You're on Lupron, right?
Ladyzar Can anyone tell me why I am having problems with my PCO when I am in menopause? Yes, I started hurting so bad, I went to the bathroom and there was all this black blood.
Kotag Does anyone know anything about the insulin resistance?
Ladyzar I don't Kotag, sorry.
mary_s When did this happen, Lady?
Kotag Thanks anyway, Lady.
Ladyzar I heard a little, but I can't remember.
Beth822 Is anyone on metformin?
Kotag Why is it so difficult to lose weight with PCOS?
Nicolel Does anyone have any tips on how to keep from breaking down into tears when I'm trying to get a doctor to understand what it is I'm going through?
Ladyzar I am not sure, but I know some of the meds help keep it on.
Kotag Sorry Nicolel, I have the same problem, it's frustrating.
Maui4me22 Good question Kotag, I am having the same problem.
Kotag The only med they have me on is Spironolactone.
Ladyzar I cry every time I see my doctor, so I can't tell you anything.
Hormonelady You know, I make a list, in between appointments. When I think of something I want answered, I write it down. There have been times that I had to just hand him the list.
mary_s Kotag, I'm not sure. A couple years ago I lived on veggies and hiked 4hrs a day 5x/wk and never lost a pound. I did that for 9-10 mos!
Maui4me22 Nicolel I have the same problem I always tell myself your not going to cry this time but I always do.
Ladyzar I think I will try that H.
Kotag That's got to be frustrating. I'm 26 years old and feel like a cow, I hate it.
Ladyzar I am 24 and feel the same way....I was once 105 lbs.
Nicolel Kotag, what age were you when you were diagnosed?
Anastasia Kotag: I am frustrated to know that if I had proper treatment in the first place I could have saved myself 100 extra pounds.
Kotag Lady - I can't remember the last time I weighed that. I was diagnosed just earlier this year. But I don't understand any of it, I had twins naturally just 19 months ago.
Ladyzar Mary, my problem is they agreed to remove my ovaries if there wasn't any pain and...
mary_s Congratulations!!
Kotag Thanks, I feel guilty though talking to people in here kind of because I know that infertility is a big part of it.
Ladyzar ...I want that, but will they decide not to now....even though the treatment didn't shut my ovaries down?
mary_s That was congrats to Kotag on twins!
Ladyzar ok
Ladyzar I wish I had twins....lol!
Kotag I'll give anyone my 8 yr old LOL!
Ladyzar lol...I would take anything I could get.
Maui4me22 I might be getting into a study on PCOS the National Insitute of Health is doing.
Ladyzar I am so worried that they won't go ahead with the oopherectomy now that I have had pain.
Kotag I can imagine how frustrating it would be not to be able to get pregnant, I'm so glad I never had that problem. I have friends here who won't have anything to do with me because of my kids and they don't have any.
Kotag Does anyone know how well spironolactone works?
Maui4me22 I have never heard of it Kotag.
Kotag They gave it to me for the hair on my chin.
Camilla I just got here, Kotag, but how well does spironolactone work on what? Hair growth, or what?
Maui4me22 I was told they could give me meds for that problem.
Kotag Camilla - the hair growth on the chin.
Maui4me22 Anyone experience horrible mood swings? I am not on any meds right now.
Camilla It works pretty well on me...but I think it is a combination of things that has made the most improvement in me lately...
Ladyzar I do Maui.
Lobeg Mood swings? Got them here!
Kotag I'm always a walking hormone, or that what my hubby says.
Ladyzar Mine too.
Lobeg I spent all day Fri. crying & most of today grumpy!
Kotag Personal question here, is it natural not to want sex???
Maui4me22 I have been having horrible ones and feel like I am losing my mind.
Lobeg Same here, Maui.
Nicolel Anyone - What types of doctors are you having the best luck with? I'm seeing a Reproductive Endocrinologist, but can't get in until Sept. Am I on the right track?
Ladyzar Have you ever just felt so sad and alone you seemed to have no feelings toward anything? I know that sounds strange.
Maui4me22 I dont want it either Kotag. I thought I would with all these male hormones in me.
Kotag Maui - that's what I'd thought, my hubby wants it all the time, I figured I would too.
Camilla If you want to get pregnant, you are, Nicolel, but a regular Endo is correct for anyone not wanting to get pregnant.
Hormonelady Know that one, Ladyzar.
mary_s Usually the excess androgens cause an increase in libido....
Kotag Lady - I've felt that way, there's days I just want to curl up in a closet and hide.
Maui4me22 Lady, no I feel that way a lot.
Ladyzar Nobody seems to understand.
Ladyzar Me too, Kotag.
Lobeg Endo, Nicolel?
Kotag I had a dr diagnose me as depressed and I don't think I was according to their definitions, I think it's all the female problems.
Ladyzar I was seeing a shrink for a year, they said I was bi-polar, and I wasn't they later told me.
Maui4me22 Kotag I did too. He even gave me meds for it but they made me feel worse.
mary_s These pcos symptoms are awfully depressing. Who wants to spend all their time plucking unwanted hair, covering thin hair areas on their head, fighting acne and avoiding mirrors? That's depressing to me!
Ladyzar I was on all these drugs that didn't help, they made me worse.
Camilla Mary-S- I have news...
Kotag That figures, I'm to the point where I trust my own opinion more than I trust the drs. Meds didn't help me at all.
mary_s What???
Ladyzar It is Mary.
Camilla I AM GROWING MY HAIR (ON MY HEAD) BACK!!!
Maui4me22 Oh Lady that is awful, I quit taking the meds when they ruined a vacation I was on.
mary_s How??? What did you do?
Hormonelady You know, I was never officially diagnosed, but my hair problems, and acne have greatly improved since my hysterectomy.
Maui4me22 You are Camilla? That is wonderful!
Nicolel What kind of Meds are you having problems with?
Ladyzar My doctor seems very understanding, but really doesn't know how to treat me. So he told me if this treatment worked I could have my ovaries removed if I wanted.
Hormonelady Whenever I went for ultrasounds, there were multiple cysts on my ovaries, ....no one would call it PCOS though.
mary_s Lady, did you run this by Dr. Perloe?
Maui4me22 When was your hysterectomy Hormone?
Camilla The only thing I can figure is that it's a combination of metformin and saw palmetto, cause the spironolactone has never helped with scalp growth, only chin stuff...last week my beautician was as excited as me when she started showing me all these little hairs growing on my crown!
Hormonelady It was in December.
Kotag Now I was told that I don't have any cysts on my ovaries, does that mean anything?
Ladyzar No, why? Should I?
mary_s I'm so happy for you Camilla!
CamillaThank ya, thank ya thank ya!
mary_s Maybe you could run your situation (Lady) by him at his chat tomorrow. Get his opinion...
Maui4me22 That is wonderful Camilla!
Hormonelady He does a chat here?
Camilla Thanks maui4me22!
Ladyzar Mary I came here on Thursday looking to find some answers when I started hurting. When and where Mary?
mary_s I'm dreaming of being in Camilla's shoes......now I am dealing with PCOS hair loss aggravated by postpartum hair loss...sheesh!
Ladyzar I know the feeling Mary.
mary_s Dr. Perloe has a weekly PCOS chat in iVillage. Go to his ivf.com website and there are instruction there.
Camilla Pop those saw palmetto caps...it took me since early April to see any difference.
Kotag I had someone tell me the hair I was losing is a normal amount, but it seems like an aweful lot to me, anything to stop it from happening???
mary_s HOWEVER***** if you have not chatted there before, you need to register tonight to chat tomorrow. You have to register a day in advance.
Ladyzar He knows more about PCO than other doctors?
mary_s He follows a Q&A protocol. You may want to read the rules first before going in.
Maui4me22 The doctors won't give me anything for my hair growth because I still want a baby.
Anastasia Maui: Are you in Oregon?
Ladyzar Ok, thanks.
Maui4me22 Anastasia I am in Southern California.
Kotag What can they give you for hair growth?
Ladyzar I will register there, when I leave here tonight. What time does he chat?
mary_s That's the sad part, Maui. It's either treat PCOS or try to get pg. You can't do both at the same time. My RE won't see me until I stop breastfeeding.
Anastasia I thought you mentioned something about the Conference in Portland next week.
mary_s 8-9:30 EST
Ladyzar am or pm?
mary_s Oh, sorry, PM.
Anastasia Maui: I was wondering where the study is.
Ladyzar Thanks :-) I know I need a doctor to help me!
mary_s Any of you use the Tea Tree products for acne?
Ladyzar Before I try cutting them out myself!
Hormonelady Ladyzar, do you mind if I ask how old you are?
Ladyzar 24
Kotag Does anyone know anything about the diabetes associated with PCOS?
Ladyzar Sometimes, I hurt so bad, I feel like I am capable of anything to stop it.
Hormonelady I take it your age is why they don't want to remove your ovaries?
Ladyzar Yes, H. and the fact I have 0 children.
Hormonelady And how did they diagnose PCOS?
Ladyzar Surgery.
mary_s How many of you would be interested in and able to attend a chat here with Dr. Perloe?
Ladyzar Me
Camilla when?
Kotag Me
Hormonelady Gee, that would be nice.
Ladyzar Why, will he come here?
Anastasia I wondering about the study you going to be in.
Maui4me22 How would you get into his chat and what time is scheduled for?
mary_s The last one he did here was on a Thursday. Will that work for anyone?
Maui4me22 Anastasia, I have to go to Maryland then I continue the study at home.
Kotag That would work.
Camilla Sure thing.
Ladyzar Any day, I will make time!
mary_s If I can get enough people interested, I will ask him to chat here.
Ladyzar Just tell me when and I will be there!
Maui4me22 If its at night that would be great.
mary_s Great, I will ask him and let you all know next Sunday!
Ladyzar Thanks, Mary.
Camilla Hormonelady- did I understand that you are post-hysterectomy? How long?
Hormonelady Yes, had it in December.
Ladyzar Are you happy with it? And how old are you?
Camilla Been there...7 years ago. Was yours total w/ovaries?
Hormonelady Im 36.....
Hormonelady Yes, total.
Maui4me22 Anastasia I can give you the info on the study if you want.
Hormonelady Actually, I'm not that happy, but there is a long story to it.
Camilla Gee, me too, only I was 37. How's it going?
Anastasia Maui: please :)
Hormonelady Well, I sure don't miss periods.....LOL!
Ladyzar I want it!
Hormonelady Lady, it's not all its cracked up to be.
Ladyzar It has to be better than the pain I have!
Camilla Me neither...the last 9 months before surgery I was only not bleeding a total of 3 weeks.
Hormonelady Camilla, did you have anything other than PCOS?
Camilla Yea, a huge fibroid, 84 polyps, and a hot appendix!
Hormonelady Wow!
mary_s 84?!! Geez!
Ladyzar I wish I had some of those, maybe they would work a little faster.
Hormonelady Are you on hormones camilla?
Camilla I guess it was time for it to go...but the weird part is that my pcos symptoms were far more pronounced years after the surgery...they were sorta manageable before. Yes, I take estrogen.
Ladyzar Do you still have pain?
Hormonelady When is the last time anyone looked in your abdomen Camilla?
Camilla Why?
Hormonelady Well, I have endometriosis too, ......there are alot of similar symptoms.
Ladyzar That is what they thought I had at first.
Hormonelady If the last time was 7 yrs ago, they might have missed it.
Camilla Thankfully, endo was about the only thing I didn't have...that and acne.
Ladyzar You lucky dog!
Camilla I have no pain, and no adhesions.
Ladyzar Then I still want a oophorectomy!
Hormonelady What sort of problems are you having now?
Ladyzar I can't bear the pain anymore!
Hormonelady Camilla? Did you say you were having problems now?
Camilla Just the sort of problems that come with pcos...weight gain from the hyperinsulinemia, etc. The weight gain is much more in control since the metformin. Other than that, I'm maintaining. Bbut I have to tell you...my doc was so uninformed when she operated on me...
Kotag Does anyone know of a good web page with info on PCOS?
Ladyzar As long as mine knows how to cut them out, I don't care how informed he is! Just get them out of me!
mary_s Just to clarify...hyperinsulinemia is the same as insulin resistance ...or not?
Kotag What is metformin for?
Camilla You'll care down the line, Lady. My doc believed that you get rid of the ovaries, the pcos goes away. Mary- yes it's the same.
Anastasia Mary: If you break it down in medical terms yes.
Ladyzar I can take all the symptoms of PCO, I just can't take the pain and bleeding anymore! I wear adult diapers when I have a period.
Camilla I know, Lady. My problems started in my last semester in college, when I was pulling 21 credits. In that semester, I had a d&c that only made bleeding worse, and by the time I finished the December finals, I was so anemic that it took a couple of months to build me up to be able to have the surgery. I was never NOT in pain during that time. I feel badly for anyone who has to go through that. Beth, I am taking 1500 mg daily.
Kotag Camilla - What is that for?
Camilla Metformin?
Kotag Yes.
Anastasia Camilla: Has it helped? I am going to the RE and begging to get on it. I have already been diagnosed as IR by a previous Endo.
Beth822 Kotag....yes to you. Are taking metformin.....if so how long have you been taking it?
Camilla Metformin is a drug used primarily by diabetics. It is most helpful in controling the effects of hyperinsulinema, which may be the underlying cause of pcos. What it basically does is teach the body to use the insulin it makes as energy instead of storing it as fat.
Kotag Are there any symptoms to that? I havn't been taking anything but spironolactone, but if I dont eat I get really shaky and my mouth has a weird taste all the time I eat too much sugar. I went in last month for a URI and found out today that there was ketones and other stuff in my urine.
Ladyzar That sounds like what I am going through now. They put me on birth control pills. I still started my period, so they made me double them up. I still had my period, then they gave me Lupron. It is a chemical menopause, after 2 weeks, it stopped my period. I had 2 wonderful pain free months and now I started again. I am supposed to be in menopause! The pain is worse when I am trying to stop my periods. I feel like they are working even harder to make me have one.
Camilla And yes, Beth, it works very well. You have to give it a couple of months to settle in, and you should start out no more than 500 mgs daily and work up, but it has made a big difference.
Kotag Camilla - does it help with weight loss at all?
Camilla Kotag- You betcha...I've never been able to lose weight like this before...if you follow a low carb diet with this stuff, you can't lose. The only downside is that you still crave carbohydrates, but when you see progress when you step on the scale, you can get through the cravies just fine!
Anastasia Camilla: Are you low carbing too?
Ladyzar They said if this treatment works, it proves that a total hyserectomy would help me. I am worried they will change thier minds since I am having problems now, but I think it did work, at least until my ovaries over powered the drug.
Camilla As a way of life now...
Kotag Camilla - Is this something that drs don't usually test for or what? I had to call them to see if they'd ever tested my insulin levels and then they told me I had to give them another urine sample.
Kotag And I hope I don't sound too stupid, but what things are considered carbos?
mary_s I thought testing for IR was about the same as a GTT? Blood not urine?? Kotag - everything you like!! Breads, potatoes, cookies, cakes candy....
Camilla Yep...insulin resistance is rather new, I think. If i understand correctly, insulin resistance is not like being diabetic...I make too much insulin, and my body doesn't use it as energy and store the leftovers; it just stores them.
Kotag That's what I'd read, but when I was tested for my URI they found some stuff that shouldn't be in there, they said it was either from diabetes or the URI. Mary - I don't eat a lot of that stuff anyway so I guess I'm lucky! Thanks, that helps me understand it better, now I can hopefully explain things to the dr's.
Camilla There are a number of diet plans that address the problem of insulin resistance...Dr. Adkins, the Zone, protein power, cad, and probably others.
Kotag I think my mom sent me a book about a protein diet, maybe I'll finish reading it. LOL!
Anastasia My whole family is going low carb, they may not like it but my daughter has the same body type and I think that if I give her these basic diet priciples it may benefit her. I will make sure she eats balanced.
Kotag Does exercise help anything? I walk at least once a day but it never does any good, I always stay the same or gain.
mary_s Kotag....Subscribe to the PCOS newsgroup...you'll learn a lot there about Metformin, Rezulin, Lo-carb diets, saw palmetto and more. I have learned so much but my memory stinks and I would have to look it all back up again :)
Kotag Mary - and how would I do that?
mary_s pco-request@lists.best.com is the address, just type SUBSCRIBE in the BODY of the message.
mary_s I have not posted there yet, I just read and read and read...
Camilla Is there another way to do that Mary? I've subscribed three times, and have yet to hear from them.
Kotag Thanks Mary, I'll be sure to do that.
Anastasia Mary: And read I have got to go back on digest mode. You can email Heather the moderator at heather@pcgal.com and she can help you.
Camilla For the lists?
Anastasia Camilla: Yes, I have been having problems with my subscription to the list and Heather fixed everythig for me.
Camilla Thanks- I'll do that right away.
mary_s Camilla, those are the directions as written on the bottom of the digest version of the messages I get.
Anastasia I think that the weather adds to my discomfort, since this week I have had more ovary pain.
mary_s Are any of you more temperature sensitive with pcos? If it gets over 75 I am miserable. I feel like I am cooking.
Anastasia I am going to the Northwest PCOSA convention next week August 2 maybe they will have some answers and new info. Mary: Since my PCO has gotten worse my tolerence of heat has gotten lower.
Camilla I think you are after menopause, either natural or surgical...I can no longer take the heat and humidity...and I was born and raised on the gulf coast of Florida...no more summertime visits for me!
mary_s Interesting!
Anastasia I don't know if it is the elevated bllod pressure or what.
Camilla But my bp is not elevated...
mary_s My bp is normal and I still can't take the heat. Do any of you exercise regularly?
Anastasia I never had high blood pressure till I had my daughter. And then it went away until last year and I never thought it was PCO related but my gyn says it may be.
Camilla Perhaps if you had the opportunity to acclimate slowly, instead of at the whim of the weather, then it might not be so bad... I walk...
mary_s How often and how far?
Anastasia Camilla: I walk... not as much as I want but once a week. I will up it when the heat cools off.
Camilla 3 miles a couple of times a week...mostly the dogs walk me, but I still get a good workout...
Anastasia Nothing like a good grag at the hands oops paws of mans best friend. JoJo have you been to PCO Chat before?
Jojo Hello Ladies Beth did you write an article for Good Housekeeping? Does everyone one here have PCO?
Anastasia Yes, how long have you been diagnosed?
mary_s I think I do. RE refuses to commit.
Anastasia That's why they call it a practice :)
Anastasia JoJo: are you being treated with anything?
Beth822 I have PCOS.
Jojo I haven't been diagnosed as of yet can't get in to see doctor until September. However I've had symptoms for most of my life. Last 2 years been making the rounds with no answer to what has been my problem..read an article by Elizabeth Austin and here I am.
Anastasia That is how most PCOers find out is through research.
Jojo Can I ask you some questions if you don't mind?
Anastasia The first doctor I when to diagnosed it and then left me hanging. JoJo: I will try to answer as best I can.
Jojo Is there any data with genetic connections to this disorder?
Beth822 JoJo according to Dr. G in Ohio....it is passed down mainly from fathers side.
Anastasia JoJo: There are some studies going on now and I have herd from other PCOer that it may be passed on from the fathers side. I think in my case it is both sides since my mother side has Aunts with PCO and my fathers side is diabetic.
Jojo I am sure both my sister and myself suffer from it. We have different symptoms but we fit the profile perfectly..
Anastasia Every PCOer has different combination of symptoms I have found.
Jojo My next question is a bit unusual but from the article and information I've collected it seems to tie in. My sister has excess facial hair in my case the sex drive is extremely high - very abnormally high..
Anastasia JoJo: Mine is the opposite due to ovarian pain. Yours is due to excess male hormone. JoJo: there is a faq at the PCOSA website at http://www.pcosupport.org and you can find info and a faq there.
mary_s JoJo, isn't the increased sex drive a bit alarming? I wondered about that too.
Anastasia Well ladies it is that time again and I have to get out of this hot room and out in the breeze.
Jojo I was on the pill for over ten yrs then hubby got fixed I went off and touble started. Lots of pain (but I have I high threshold for it) which was followed by an overwhelming need for sexual pleasure..Then I was diagnosed with adult diabetes. I have been put back on the birth control pill to help the pain but they could find no reason for it.. been on it for 9 months and my sex drive is still raging...
Anastasia I am sorry to cut it short JoJo but I have to go.
mary_s Jojo, the BCpill was hiding your pcos symptoms.
Anastasia JoJo I am glad to meet you and hope to see you here next week :) Good Night ladies and have a great week.:)
mary_s Nite Anastasia :)
