Register for "PCOS" Chat hosted by PCOSupport Association - July 19, 1998
Mary_s "Esther, Lady, Maui, are you all PCOSA members?"
Esther "Yes"
Ladyzar "No, not yet"
Maui4me22 "No"
Ladyzar "Why do my ultrasounds show up normal?"
Mary_s "Lady, do you mean you have no cysts on your ovaries that can be seen by u/s?"
Ladyzar "Right, they tell me it is because they are collapsed at the time of the u/s."
Mary_s "Not all PCO women have cysts...I don't."
Mary_s "That's why some prefer to use the other name which doesn't imply having cysts: Hyperandrogenic Chronic Anovulation."
Ladyzar "I do, they saw them during my laparoscopy. They said I have extreme PCO."
Esther "So do PCO women have them "sometimes"? I have had normal and cyst-showing scans."
Mary_s "Good question, Esther. I did not realize the cysts could come and go."
Ladyzar "They told me they swell and then collapse."
Ladyzar "At least mine do."
Esther "Sorry to be stupid - but do you mean all around the same time?"
Ladyzar "Close to the same time. It is very painful."
Maui4me22 "I plan on becoming a member as soon as I get the info via email."
Esther "Hmm - that would explain a few things!"
Mary_s "Esther, do you have the pain Lady is describing ?"
Esther "Yes"
Ladyzar "Like what? Looking like you lost or gained about 20 lbs in 1 day?"
Mary_s "It sounds awful!"
Ladyzar "It is."
Mary_s "Lady, when you did see your cysts on u/s...how large were they?"
Ladyzar "I am having a oopherectomy this year."
Esther "Yes! Sorry to sound so excited, but I do feel like Ladyzar describes."
Ladyzar "I never got to, they were always collapsed"
Esther "Oops - the yes! sounded like I was pleased about your op!"
Mary_s "So you had the pain, went in to be scanned and by then it was too late?"
Ladyzar "I am pleased about it."
Ladyzar "Pretty much, they said they just haven't been lucky enough to catch it on u/s."
Ladyzar "So I have to get the scopes."
Mary_s "Do the cysts burst at certain times of your cycle, if you have somewhat regular cycles?"
Ladyzar "I don't and no they don't. They just keep getting bigger and more painful."
Ladyzar "I am in a chemical menopause right now."
Maui4me22 "My cysts are there, I only had one burst when I was on clomid."
Ladyzar "Really?"
Ladyzar "I took that too, but that never happened to me. Did it hurt?"
Maui4me22 "Yep, I have had about three ultrasounds and they always see the cysts."
Maui4me22 "It was very painful when it burst."
Ladyzar "I wish they could see mine on u/s, because they keep putting me through those stupid scopes."
Ladyzar "That hurts!"
Maui4me22 "I didnt know what was happening I had just had wedge resection surgery"
Ladyzar "What is that?"
Maui4me22 "My wonderful doctor said that surgery would cure me. They cut wedges in my ovaries."
Ladyzar "Oh, not good."
Ladyzar "They decided to just cut my ovaries out."
Maui4me22 "And removed some cysts."
Maui4me22 "That was three years ago and now a new doctor told me that I should never had, had that done."
Ladyzar "That sounds normal."
Esther "Have any of you heard of/encountered anyone who has had successful surgery on ovaries?"
Esther "I ask because I never have - and I've "spoken" to a lot of women lately."
Maui4me22 "I havent met anyone yet."
Ladyzar "Yes, I have."
Esther "Is it just a case of fiddling about with them for the sake of it?"
Esther "Ladyzar, you know of someone?"
Maui4me22 "Lady, what kind of surgery did they have?"
Ladyzar "My sister-in-law had everything removed and she loves it."
Esther "How about ovarian procedures not involving removal?"
Ladyzar "She had work done on them before that but it didn't work."
Ladyzar "Is PCO a disease or a syndrome?"
Esther "So, although it was successful in that she was happy, it was not actually remedial work?"
Guest4 "Does anyone in here know anything about Polycystic Ovary Syndrome?"
Ladyzar "We all most likely know something about it."
Anastasia "You can find out more by visiting the PCO Support website..."
Mary_s "We all know some things...what questions do you have?"
Maica "I am quite familiar w/ pco and infertility issues."
Ladyzar "I know your web site says it is a Syndrome and my doctor calls it a Disease."
Guest4 "It seems like there is a strong possibility that I have it."
Ladyzar "Is there a difference?"
Mary_s "It is referred to both ways PCOD and PCOS."
Ladyzar "Thanks Mary"
Mary_s "What are your symptoms Guest4?"
Maica "Either way disease or syndrome or whatever it sucks!"
Ladyzar "Yes it does!"
Esther "Here, here Maica!"
Maica "Is anyone here on rezulin or troglitazone?"
Guest4 "My ultrasound shows that I have cysts all over my ovaries. I have excess hair growth all over my body, pain in my ovaries, and now I'm losing my hair on my scalp...there are more symptoms like being overweight, etc..this will give a general idea though."
Ladyzar "It sounds like it."
Mary_s "Sure sounds familiar, doesn't it ladies?"
Ladyzar "Heavy periods?"
Ladyzar "If you have them?"
Anastasia "Wish I could say it didn't :)"
Esther "I have just had my first AF in 5 months - no drugs - but no usual symptoms. The symptoms of backache, pelvic pain and all-over swelling kicked in *after* it finished - I'm confused!"
Maica "Guest4, do you have acne and irregular periods or does that go without saying?"
Guest4 "The strangest part of it all is that my blood tests all came back normal."
Mary_s "Do you have a copy of your results?"
Ladyzar "I have "long" hair and I am shedding all over the house..."
Ladyzar "and in the car....."
Guest4 "I do have acne, but had a hysterectomy for a couple of other female problems about a year and a half ago."
Mary_s "Lady, how's that shower drain? :)"
Ladyzar "I get acne every time I start swelling."
Ladyzar "Clogged daily!"
Guest4 "I do have a copy of the results. They all came back within normal limits. The only one that was suspicious was the ultrasound."
Esther "Same thing happened to me."
Mary_s "Guest, how long have you had the excess hair, scalp hair loss and other symptoms?"
Maica "Even though the diagnosis is nice to have it doesn't make the disease any easier"
Mary_s "Maica, it just makes you quit wondering what you've got, right?"
Ladyzar "Your lucky, all mine were normal, I have to get cut open every time they want to see how it is going..."
Ladyzar "and they claim I have extreme PCO. What does that mean exactly?"
Guest4 "Lady, the hair loss is scary. Luckily I have thick hair, but am afraid I will be bald by the end of the summer if something doesn't happen soon. This has been going on for about 3 months now."
Maica "Thats about all -- wow, Ladyzar - I guess I have nothing to complain about."
Mary_s "I read that even though the results may be normal, the way the hormones react with your skin, hair follicles and pores may be abnormal. It is described in easy to understand terms in Geoffrey Redmond's book "The Good News About Women's Hormones". And yes, I know, the news ain't so good..."
Ladyzar "I have been losing mine for about 2 years now, maybe more. I am not bald though, it grows as fast as it falls out."
Ladyzar "They thought I was bi-polar for a long time. I thought I was crazy :-)"
Anastasia "Has anyone had constant nausa with their PCO?"
Guest4 "Do you think it is possible for me to have it even though all my blood work came back within normal limits?"
Ladyzar "No, but diarrhea."
Maica "I have never experienced nausa."
Esther "I am experiencing nausea at the moment, Anastasia"
Ladyzar "Yes, all mine did the same. Ask for a laparoscopy."
Ladyzar "They will know for sure if that is it."
Ladyzar "I am sure most of you in here have had the laparoscopy?"
Esther "No - I've been avoiding it!"
Anastasia "Like the plague :)"
Ladyzar "it is worth it if you are not sure what it is. They can also tell how far advanced it is."
Esther "I'm feeling sick, have backache and all the usual stuff - but have just finished AF."
Mary_s "I haven't had a lap either."
Ladyzar "How long have all you had it? I have had it for 12 years now, but only known what it was for 2 1/2 years."
Maica "Sorry - but what is AF?"
Ladyzar "It hurts, but it will tell them the best way to treat you."
Mary_s "Guest4, hard to say about your test results. Have you visited ivf.com? A lot of info there about PCOS from Dr. Mark Perloe."
Mary_s "Aunt Flo = your period!"
Anastasia "Guest: I don't think that blood test are always the most reliable. My thyroid was in the normal to low range so I went years not on the Synthroid. Till my new PCP put me back on it and it really has made a difference."
Maica "Oh duh, I get it! Thanks Mary. I just assumed it was some horrible test I had not been subjected to yet, ha ha!"
Esther "It scares me how hit&miss treatment is."
Ladyzar "I am on Lupron and I LOVE it."
Esther "Seems like "they" try everything regardless of long-term effects."
Ladyzar "Yes they do."
Esther "I'm not happy about being experimented on!!"
Maica "Ladyzar -- what do you love about it??"
Ladyzar "No period, no pain, no swelling."
Ladyzar "They tried the pill, then they made me double them up, and my body just fought twice as hard - 22 days of horrible pain!"
Ladyzar "And bleeding."
Anastasia "Been there, done that, didn't like it either."
Ladyzar "While taking 2 pills every day, I was wearing adult diapers."
Ladyzar "And changing them every 2 hours."
Maica "I was on the pill for years and it masked some of the symptoms - 3 years ago when I went off it to try and become pregnant; every symptom in the book took hold."
Ladyzar "I know what you mean."
Mary_s "I noticed that too when I went off Trilevelen in '94. Boom! All the symptoms jumped out at me."
Ladyzar "We tried for almost 5 years, and during that time I thought I was going to die."
Esther "My symptoms only started big-time when I stopped taking the pill."
Maica "But of course - the only thing a Dr told me was that I might have trouble getting pg and need fertility drugs -- they never prepared me for this."
Ladyzar "This last year has been hell for me. I hurt and swell 3 weeks out of every month."
Maui4me22 "Are we talking about birth control pills?"
Ladyzar "They don't work!"
Esther "About how our symptoms seemed to be hidden by them."
Maui4me22 "I heard the same thing 12 years ago"
Ladyzar "Not mine."
Anastasia "What I hate about being an overweight PCOer is that it took several doctors to find out what I had."
Ladyzar "It makes mine worse."
Maui4me22 "I can't go on birth control - it makes me feel crazy."
Esther "They worked perfectly - I had no interest in anything physical;)"
Ladyzar "It took me almost 10 years to find out what I had."
Esther "I used to be OK about being overweight - now I'm angry."
Maica "The Dr's assume it is ALL your diet and if you would just exercise - YEAH RIGHT - like it is that simple"
Ladyzar "When I was 12 they told me it was blood clots in my ovaries."
Esther "Thinking about it - I never have overeaten."
Ladyzar "We believe you, I am the same way and I have gained a lot the past 2 years."
Esther "I have had an eating disorder for the past several months - stress of all this."
Ladyzar "Do you just forget to eat?"
Esther "Probably the first time I've pigged out on a regular basis - ironic, eh?"
Maica "You get told that you process calories and food differently - but they don't tell you what to do - the Zone is recommended and now the general media states it is a fluke -- urrgg what are you supposed to do ?"
Ladyzar "They finally found mine 2.5 years after trying to have a baby."
Maui4me22 "Well, I am looking at the low to no carb diet I am going to see if that works."
Anastasia "If I could have found out about low carb it would have been easier too."
Ladyzar "I did that diet and I hope you have better luck. I gained 3 lbs in 2 weeks on mine."
Maui4me22 "I just found about the no carb from your info on your website."
Esther "I tried lo-carb for a few weeks and felt great - I stopped a week ago whilst on holiday (eating HUGE amounts of carb) and I now feel rotten."
Anastasia "Ditto Esther."
Maui4me22 "Do any of you know about any good studies they are doing on PCOS?"
Maica "WOW that is positive Esther and Anastasia - I bought the book but have had a hard time finding hope."
Mary_s "Isn't Dr Legro doing a study in Ohio?"
Ladyzar "I am just happy that they are going to cut mine out!!! Snip away."
Esther "Ouch Ladyzar!"
Ladyzar "No, I am very very happy!"
Mary_s "Will you be on hrt, Lady?"
Ladyzar "hrt?"
Anastasia "I am going to find out about a genetic study when I go to the PCOSA conference in August in Oregon."
Mary_s "hormone replacement therapy"
Esther "I hope to conceive - but when I'm in extreme discomfort I wish someone would just put me out of my misery (I don't mean permanently!!)."
Ladyzar "It is hereditary."
Ladyzar "Oh yes, for the rest of my life, Mary"
Maui4me22 "Anastasia I was thinking about going to the conference."
Maica "The University of Wisconsin Madison - is very up on the latest, but I am not sure they have a study?"
Anastasia "Maui4me22: I am going to sign up next week."
Esther "I have experienced problems getting anyone to answer my queries about research - seems a mere sufferer is unworthy of a response."
Anastasia "So untrue Esther."
Ladyzar "I am stuck at home with a heating pad stuck in my clothes and a 40' extention cord 3 out of every 4 weeks."
Ladyzar "I lost my job because of it."
Esther "Sounds just like what I need Ladyzar - the heating pad"
Maica "Esther - isn't great how it seems like every where that you turn people are pg ?"
Ladyzar "You can move around the house with a extention cord."
Esther "Yes - literally!"
Anastasia "Maica: I know what you mean. I was at a baby shower yesterday."
Ladyzar "It makes me mad when they look really poor and dirty, and they are yelling at the 3 they already have!"
Esther "I'm avoiding the post and the 'phone as friends of ours are expecting at the moment"
Maui4me22 "I finally hit my last wall two weeks ago when I went to that doctor when he told me I could only get pregnant by IVF."
Esther "I hate the way this makes me like a mad woman!"
Anastasia "Ladyzar: Hey now that could be my step cousins :)"
Anastasia "Maui4: Why?"
Maui4me22 "Esther I feel like I am losing my mind part of the month."
Ladyzar "It is my husband's old high school friend and his wife. They have 6 now and they are the worst parents. She throws it in my face every time she gets pg."
Esther "Mine's already gone Maui - I'm trying to get it back:("
Anastasia "Ladyzar: I hate people like that."
Esther "6????"
Maui4me22 "The doctor just gave me a conference and from the history I told him about myself that is what he came up with."
Mary_s "Sounds like he is jumping the gun a bit.."
Maui4me22 "I had wedge resection three years ago and he said that causes more damage on top of PCOS."
Esther "It's unfortunate that many of those who are clearly interested in women's health - ie the doctors - have such trouble with communication."
Ladyzar "Her 5 year old went to kinder. and they told her they wanted to put her in a special class (because they NEVER read to her), and she got mad and pulled her from school and waited until she was forced to put her back in the next year. That just put her another year behind!"
Maui4me22 "Well it got me to really investigate PCOS instead of taking their word."
Esther "Same here Maui."
Esther "I have found out some interesting stuff."
Ladyzar "Where?"
Esther "Via all the ladies on PCOsupport."
Ladyzar "This is the only place I have ever found anything."
Maui4me22 "I have taken their word for 12 years now"
Ladyzar "I have found a million postings of other women looking for info."
Esther "I have had 20 years of this - and I'm only 30 now."
Maui4me22 "Lady I have seen that on here, its so sad"
Mary_s "Lady, sounds like you could build your own site!"
Ladyzar "I am only 24 and it has been 12 years."
Ladyzar "LOL, thanks, I think"
Esther "I thought I was just overly sensitive to pain - didn't realize no one else I knew had it any different!"
Esther "It connects to my other health problems, so I often don't bother going to my GPs as they want to treat everything separately."
Mary_s "That is why the PCOSA site is so helpful. We can take info from there to our docs to get them current."
Ladyzar "My doctors also treat everything separate."
Anastasia "My frustration is not just with my doctors but with my family and friends as well."
Esther "If I don't want to conceive, my other "option" is to go on the pill - this from my "specialist""
Mary_s "If it isn't terminal or debilitating it's hard for family and friends to understand."
Esther "I have been through the whole family and friends thing too."
Ladyzar "Lupron, it is temparary, but it is wonderful."
Maui4me22 "Anastasia that can be very painful my family understands hubby's side is the ones who don't."
Ladyzar "It can be debilitating at times, at least for me."
Esther "It's also a "hidden" condition - and having a big behind does not inspire sympathy;)"
Ladyzar "My husbands family are my supporters. My family is the bad ones."
Maui4me22 "That is a fact isnt it?"
Esther "We just holidayed with my in-laws - I explained til I was hoarse that bread, cakes, potatoes etc were BAD for me - still dished them up."
Maui4me22 "That is awful Esther."
Anastasia "I have a friend who thinks that she has Endo since her mother and aunt had it (DES babies). She thinks that is what her symtoms are from, but when she had the u/s done the found nothing but she did have cysts on her ovaries."
Ladyzar "I was telling my mother about having another surgery next month and she said, "I have to go the neighbors are here. Call me and tell me how it goes.""
Maui4me22 "That would be something my mother-in-law would do."
Esther "I'm so angry with myself for eating all that rubbish - it's all stuff I love."
Ladyzar "My mother in law would sit with me and help."
Anastasia "I think that she should check for PCO, but she thinks I am full of it."
Esther "Now I know so much about PCO I want everyone else to know too - but I can see them switch off when I start talking about it."
Ladyzar "My mother doesn't mind telling all her friends I can't have a baby and will be gutted soon, so she can get the sympathy."
Maui4me22 "My mother was infertile. She had one and adopted me so she really understands."
Ladyzar "But would I ever get any from her....."
Esther "My mother had fertility problems - she thinks it may have been PCO."
Esther "Her symptoms were very similar."
Ladyzar "My grandmother might have had it."
Maui4me22 "Thats why I try to surround myself around sympthatic friends but no one truly understands unless they have what we do."
Esther "That's horrible, Ladyzar - do you have other family members who are more understanding?"
Ladyzar "Yes, thank god."
Esther "Quite right, Maui, I have recently got to know another PCOSer and we have very quickly become very good friends."
Esther "It's amazing to have total understanding about this."
Ladyzar "No woman on my mother's side was able to have children after 21 (of course they were all married by 15)."
Ladyzar "Guess I should have been stupid and tried then :("
Esther "I seem to be the family statistic at the moment - you know, the 1 in 10 or whatever."
Esther "Is there evidence that PCO gets worse?"
Ladyzar "Yes, my doctor swears it does."
Esther "Oh *great* :-("
Mary_s "I've heard women say their symptoms do get worse over time."
Ladyzar "I know mine is worse by the year, at least I bleed and hurt more and my symptoms worsen."
Anastasia "I don't need a doctor to tell me that... I can tell that in the last few years it is worse."
Ladyzar "Sometimes I can not even walk due to pain."
Esther "Same here."
Esther ""Women's stuff" is an embarrassment - it's just not acceptable to talk about your ovaries in polite company!"
Ladyzar "The pain isn't too much worse (I don't think it could be), but the time between periods keep getting longer."
Esther "So...if you're in agony, you're not supposed to say why?"
Ladyzar "No, you are a woman, don't you know you are supposed to be able to take it. lol"
Mary_s "Or those around you whisper "female problems"!"
Esther "People always think they have to come up with an equal piece of info - eg "oh yes, I knew someone who...""
Anastasia "I am a rude American, I hang a sign saying caution extreme PCO PMS."
Esther "I have lost all of my inhibitions about the subject - to my dh's horror."
Anastasia "So how is everyone's progress this week, any new meds?"
Esther "No new meds - but hopefully some useful info (for me) regarding Metformin."
Anastasia "I can't wait for my RE appt. Metiformin here I come... three weeks and counting."
Esther "Just found out that a doctor at the hospital where I've been receiving "treatment" (hahaha) prescribes the stuff. Are you IR?"
Anastasia "Yes."
Esther "It is pretty bad when you have to rely on the PCO grapevine to find out what is happening in your own town. How did you get a test for IR - did you request it?"
Anastasia "My dad's side of the family is prone to adult onset diabetes... so they are monitoring me."
Esther "That's great - for you."
Anastasia "Are you going to try to get met?"
Esther "My PCO friend has experienced difficulty getting an IR test - seems her doctor doesn't know about it - bizarrely. We are both desperate to try Met."
Esther "I have had Clomid and the "next step" is Pergonal, but I'm not at all happy with the way things are going with my treatment. I have a family history of diabetes."
Mary_s "Do either of you know what the symptoms of being IR are?"
Esther "I always suspected I had something connected with diabetes - and bingo!"
Anastasia "I have dark patches around my neck. Other than that I had an Endo tell me I am."
Mary_s "I thought I read something on the listserv about getting very shaky feeling if you are late with meal time...??"
Anastasia "She was very rude about it too."
Esther "In what way rude?"
Esther "I get shaky and irritable if I'm late with meals."
Anastasia "She was telling me that I was going to die from my weight and that all I needed to do was just eat less and I would be fine."
Mary_s "I get that way too and I crave carbs."
Esther "While I lo-carbed, I felt much better and in control. If I felt shaky I ate peanuts rather than something higher in sugar."
Anastasia "It is incredible the amout of carbs that people consume in one day without thinking about it."
Esther "Yes - I've had the "lose weight and be cured" advice too."
Esther "I daren't think about my intake this past week. I was in Ireland and EVERYTHING is full of carbs!"
Mary_s "Ah, potatoes!!"
Anastasia "It fries my egg that they always assume that you are eating and eating and eating. I eat the least of all my family and I am the heaviest."
Esther "And potato cakes, and soda bread and farls and....;-)"
Mary_s "farls?"
Esther "Potatoey cakey things!"
Mary_s "yum, yum!"
Esther "Exactly!!"
Mary_s "I am a potato-aholic!"
Anastasia "Yes me too, starches are my down-fall."
Esther "And of course, there is a tendency to feel obliged to eat things you may not eat again..."
Mary_s "or just to have a taste... :)"
Esther "Just a teeny bit...."
Esther "Unfortunately, soda bread is enormous."
Anastasia "My nausa has gotten the best of me so it is hard to stay low carb lately."
Esther "I never realized before last week how much potato there can be in a single meal."
Mary_s "I found that mashed potatoes cures nausea :)"
Anastasia "I had them last night and didn't work... it did when I was pg but not lately."
Anastasia "I wonder if it is my blood sugar level... or if it is the PCO."
Mary_s "That's when it workd for me - while pg. First trimester (last summer) I lived on mashed potatoes."
Anastasia "Was it a boy or a girl?"
Esther "Since I got home, I haven't been able to find anything I can tolerate to eat."
Mary_s "Girl"
Anastasia "Bingo... they kill ya with nausea."
Anastasia "Esther: why?"
Esther "No idea - having lots of pain too and headaches."
Mary_s "Because of your body's reaction to the carb overload last week?"
Esther "Dh thinks it may be the delayed effect of a week with his mother!;-)"
Mary_s "LOL!!"
Anastasia "HA :)"
Anastasia "Maybe that is mine, she was here two weeks ago :)"
Esther "I think you may be right Mary - I've abruptly stopped eating rubbish."
Esther "My MIL filled me with carbs AND drove me insane - which is worse?:)"
Mary_s "Tough call!"
Esther "Never been pleased to get on a plane before - she may have cured my fear of flying!!"
Anastasia "You could market that :)"
Esther "Yeah - but the insanity part first could be unpopular!"
Esther "I should go - sleep would be a good idea - night all"
Anastasia "Night and have a good week :)"
Mary_s "Nite ladies!"
