newly diagnosed

[kansasgirl]

:confused: I have been newly diagnosed(1 1/2 mo) w/ PCOS. I thought that I had it a long time ago, but no one would listen. I was referred by my PCP to an OBGYN for my female problems and he just told me I was fat....I am now at the heaviest that I have ever been in my life at 302lbs, I was 165. My problem is that I bleed all the time. I have been seeing my doctor's for 5 years, at first it was dysfunctional uterine bleeding, I was put on birthcontrol, they didn't work, I had progesterone, nothing..I even had a D&C...still nothing. I have had approx. 25= skin tags removed, I have excessive facial hair on my upper lip, cheeks and the worst under my chin. I feel that the drs and nurses think I am hallucinating about my excessive bleeding, but I'm not! One of them even said that "if she was bleeding as much as and for as long as she says she has been than her iron level would be lower!" I feel completely frustrated :cry: I can't even talk about it lately w/o crying. I recently had an abnormal pap(11-02) for the 1st time in my 29yrs...It came back w/ moderate/severe dysplasia???? I was sent to a Dysplsia Clinic to have a colopscopy and then 1 month later I had a Leep procedure, that was 6 weeks ago, my cervix is healing. The head Dr. put me on met(my 2nd mo) my PCP tells me that I am type 2 diabetic, I'm confused, the other dr. says I'm hyperinsulinemic, is there a difference? I cannot remember having a regular cycle. I will bleed for 2-3 wksm stop for a couple of days and then start again, needless to say my sex life w/ my husband is strained..to say the least. I'm glad I can read others' problems, I don't feel so alone, any suggestions or comparisons? thanks

[PCOS_lady]

Hi, I have all the same problems, except I do not bleed at all most the time and I do not have a lot of noticable excess hair, most of my overgrowth is in the thigh, groin area and my stomach, thank goodness. I hate it that doctors just assume that being overweight causes the health problems, it does not. I gained 75# in 1 year, with no changes in eating or activity. I bust my tail trying to lose wt at times and get no results from typical diet and exercise plans, the low carb is the only thing that works for me. You need to get the doctor to send you to and endocrine doctor if you have not seen one already. And, check out these web sites: http://www.pcos.net/index.html, http://www.terrijean.com/index.2ts?page=pcosepidemic, http://www.medifocus.com/guide_detail.asp?gid=ND014&a=a&assoc=Google&keyword=polycysticovary. Just highlight and copy and paste into your address bar, then you won't have to type it all in. A lot of doctors and nurses have little or no knowledge about PCOS, so educate yourself and tell the the treatment you want, unfortunately this is neccesary with PCOS, until you get in with a good doctor. Met is the proper drug for you to be on, and some think you need HRT with it, and a low carb lifestyle. Good luck to you, hang in there.

[kansasgirl]

Thanks for the information. I really feel like I'm at my wits end dealing with all of this. :confused: People don't understand what I deal with on a daily basis. I have been on soooo many PCOS web sites, trying to inform myself so that when I go to the doctor again, I have more info to present. I am on a low carb diet, I have to check my blood sugar daily(dr's orders). I really hope that I can get this under control, I will turn 30 in October and I hope that I will be able to have children soon, that is probably my biggest fear(infertility). Anyway, I appreciate your words, it makes me feel better to have others to talk to about it.

[skinnyinme]

Hey Kansas girl! I'm sorry for what you are going through, but it
sounds like you are on the right track. I believe that this WOE is the best possible thing you can do for yourself. I also have PCOS -recently 'diagnosed', but self diagnosed years ago. ( isn't the internet great?) Doctors also didn't know what to make of me.
Along with PCOS I have Endometriosis, excess facial and body hair, acne, weight issues (obviously), and very irregular bleeding. Like you I sometimes have bleeding for months at a time, and sometimes none for years. I can't currently take any hormone replacent meds because my blood pressure is elevated. Nothing ever seemed to really help anyway.
A couple of years ago I lost over 30 pounds on the Atkins plan, and then gained it all back plus some. But for a very good reason: I had my second baby! I was told at age 22 that I would likely never have kids, but I believe that weight loss, and LCing in particular, played a major role in my being able to conceive.
Just before both pregnancies I lost a large amount of weight and had noticed significant improvement in ALL of my PCOS synptoms, and them conceived after years of trying. I don't believe it's a coincidence at all. Somewhere on the PCOS.com website there is an article about how weight loss can release certain hormones into your bloodstream that can correct some related problems. Check it out and I think you'll find that this program you're on is the smartest thing you can do to improve your chances of pregnancy, and also to corrrect alot of the other challenges you face. With my little miracle now19 months old , I thought it was time to get the rest of my health back on track. And I have no doubt that this LC WOE is the only way to go! Sorry this was so long-winded, but I thought my story might help you with yours . I hope so. Good luck!
Andrea :roll:

[kansasgirl]

Thanks for your story, it really gives me hope that I too will have a child. My main difficulty is stress, I work 12hrs a day for a police dept, I do not get to take any breaks and I sit for the entire shift(I dispatch). Dieting is really difficult under my current work conditions, I bought a treadmill, but after 12hrs(7p-7a) and sleeping, I struggle to find the energy to exercise. I definately know that I have to make time, but it is hard.
I really feel stressed out about my excessive menstrual bleeding, it really has me upset :( . My sex life has dramatically decreased to the bleeding(not my husband's choice). I feel gross all the time. Every day that I bleed, I cry. My husband tells me not to worry or be upset, but of course I cannot help it. I cannot remember when I had a regular cycle.... now my discharge is kinda dark, it's strange. I'm tires of explaining all of this to my doctor, it seems like I'm talking to a brick wall. nothing seems to work.

[PCOS_lady]

I used to do that dark discharge/bleeding, too. It worried me too, then it just stopped. Since I have been on the Avandia for a while and eating low carb, my periods are regular now. I am about to me 30, too, in May. My hormones used to stay so messed up. I still have a lower sex drive. My husband tries to be understanding, but I know it is difficult for a man to understand what we are going through. Earlier in my life before I had any signs or symptoms of PCOS, I had a very healthy sex drive but now I am just boring, lol. I am hard on myself because I am fat, too. I do not feel as pretty, even though my hubby says he does not care ( I gained 100 pounds after we married in a very short time due to the PCOS). We have been married 6 years now, but it is embarrasing for me, I do not even want his friends to see me now, because I am ashamed and people really do not understand. I just got an Atkins book today and I am going to read it and try to get on induction and see if that helps more. Your job sounds so hard and stressful, I do not think I would have energy to tread mill either after that. Take vitamins if you are not already and find some time for you, in a warm bath with candles, and such. Treat yourself like you are special, that helps me relax and it does help stress. Good luck.

[kansasgirl]

Thaks for your comforting words of encouragement! I will be married for 2 years in September, I turn 30 in October, and I have no children. God willing, I will be blessed in the near future. My husband knows that I get really upset about the bleeding and he's sweet about it, but sometimes it's doesn't help no matter what words of comfort he gives me. I gained over 100lbs as well, but I attributed it to my mother's untimely death(age 43)
I take a multivitamin daily and I am going to change doctors soon. Maybe a job change is in my future as well, not soooo stressful. Dealing w/ the public and police officers and dangerous situations on a daily basis, 12hrs a day does take it's toll. I used to really love my job, but the work load is beginning to worry me, my health and my husband and future family will win out over the excitement of a career in law enforcement. It really helps to read and chat w/ others who area going throught the same thing. Thanks again for being my personal cheerleader for the day. :cheer: We all need to be encouraged.

P.S. Do you think Oprah would do a show on PCOS???

[Froggirl]

I have been going thru this for years!!! Except I would not have a cycle at all! Every doctor I saw said I was "dramatic". NOT 1 even did a expansive blood work up. Finally (because my PCP was sick of me) I got my endo Dr. It has made a world of diffrence!

My symptoms
Skin so dry my thighs would crack
Hair loss
No cycle
Pain in the lower
Strange hair growths on the thighs, face, and THE AREA HAHA
Fatigue
Excessive weight gain
(just a few I do not want to crash the server) hahah

I was having night adventures...At the time I was living alone and my cat suddenly started biting me sevearly in the middle of the night. I was getting ready to get rid of the cat! Then I started waking up...on the kitchen floor...in closets..and the poor cat was locked up somewhere.. I WAS GOING INTO DIABETIC COMAS!! The cat could smell the change in chemistry and was trying to help! My PCP had the diagnosis that I was a severe drinker...I told her I had not a drop..She gave me the "you are living a fantasy look" so I DEMANDED to see anyone!! I mean I was desperate...I was screwing up at work...forgetting things..

Even if you are half as sick as I was it is absolutely no way to live! Ask to see a endo!!!!!!

May I ask...what are your blood sugar levels like? and at what times do you test.

Living LC I have gotten off my Metformin (I am so glad it made me sick) And I have reversed my "cycle" problems!!

Please let me know! :roll:

[kansasgirl]

I test fasting and 1-2 hrs after I eat, they run between 80-96 all the time, rarely are they over 96 and never below 80. I really appreciate the helpful info, I am in the process of looking for a new PCP. I too get that "fantasy look", mine was usually from nurses who didn't think I was bleeding for 2-3 months straight, I could bring them some lovely samples from home if they wanted, haha! I even had a doctor(head dr) tell me that he didn't know what was wrong with me and they had checked everything and suggested that I have a hysterectomy :( at the tender age of 27, no kids, I was so upset, I just had to leave and cry the whole way home. The whole situation is just plain frustrating for me and my husband.

[willsmom7]

So sorry to hear you are having troubles like that. Have you tried to see a reproductive endocrinologist? That's what I finally did and had no problems convincing anyone there I had PCOS. Just a thought!!

[Froggirl]

If you ever wake up in the middle of the night and think of it...test and see what happens.. This may not be an issue in your case..Sounds like a new PCP is a good idea. There IS something wrong so DO NOT GIVE UP!! :spin:

Let me know how you do!!!

[kansasgirl]

I have been irregular for ever, lately I have been bleeding for over 1 month, I stopped for 3 days and now, I'm bleeding again.... :confused: I really do not know what to think. I'm sure I sound like a broken record to my doctors, but my periods never seem to straighten out, I'm sick and tired of this, does anyone else go through this???

[Athena123]

I'm only 19 and was diagnosed officially at around 17. I'd been having the excess hair growth since I was about 14 though. From age 13-18 I probably got my period maybe 10 times... and half were from taking birth control pills. Finally last summer I lost about 60 lbs on a low fat diet. I started getting my period regularly at the end of summer (Sept.) and am still getting it normally. The weightloss definitely helps. And exercise helps with the PCOS symptoms a lot, too. Do as much as you can, even if it's only 15 min a day.
Now onto your bleeding problems. My mother has really long, heavy periods. She has something called fibroids. I don't know much about them, but I'm sure you could find lots of info on the web. Have you been tested for them? Just a thought.

[pinkys140]

Kansasgirl, I am so sorry you have had this problem. I know how you feel. I too was told I have had pcos for a long time but my old doctor never bothered to tell me. It explains alot. Try not to be to discouraged. Keep looking till you find a doc who meets your needs. good luck to you..