Polycystic Ovarian Syndrome (PCOS) - Almost, But Not Quite!
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A Patient's Guide to PCOS: Understanding--and Reversing--Polycystic Ovary Syndrome
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You've Got It, Now Deal With it!
I think the title basically sums this thing up, You've got it, now deal with it! That's kind of the only choice/option that women (present company included) with PCOS are given. You've just been told you have this Syndrome that's common, but uncommon, that is like diabetes, but not quite diabetes, that's considered infertility, but can be reveresed, that can't be cured, but you can take medication for the rest of your life or live a different lifestyle and you "should" be ok. If you are a younger women or just a women in general and aren't considering having children at the present moment, then you can take contraceptiive medication that will help you a bit, but at the same time you've been told that the younger you are the better your chances of conceiving are. If you're a women that is trying to become pregnant, then here are you're options, Medicine, lose weight, and plenty of Doctor visits are in your near future, while loosing weight is good and I'd highly reccommend this to all women with this syndrom, but if it was that easy for us, wouldn't you think we would've done that a while ago. Also, what happens after you're pregnant, you gain the weight right back and then back to the drawing board with the weight again.
The above mentioned items are the things, thoughts, ideas, struggles (internal and external) that women with PCOS have to deal with. Those things are kind of like the Hirsutism (Excessive Hair Growth) thing that we have to deal with. We get hair everywhere that it shouldn't be and lose hair in the place where it's suppose to be. However we can always remove the hair that's there, but what's the point, because it will almost inevitably (how fitting) grow back. This is our life, this is who we are, but the rub is, it's not who we have to be. PCOS - A CATCH 22!
I was diagnosed about 6 months ago after about a two years of trying to have another child and being VERY unsuccesful. I had began to try to have another child after a visit to my GYN. for very irregular menstrual cycle and abnormal pain. I will never forget that day as long as I'll live, after an extensive family history talk, health history talk, and a blood work. I was given a medication to start my cycle, a pat on the head, and sent on my merry way, because at the time I was only 25 and I wasn't considering having any more children at that moment. I took the medication and then all seemed right in my world, my cycle started and then returned to the regularly scheduled program (smile) so I never gave it another thought. However, after 4 months of a regular programing, I was taken off the air (smile again) and knowing that my partner and I hadn't been trying to prevent the show from being yanked, I took a HPT, but to my delight and dismay it was negative. After the scare and excitement of it all I decided to make another visit to my GYN, by that time it was time for the always dreaded "yearly exam"! After the examination, I was told that everything seemed fine and they would of course call in a few days with the results. I went on about my week and was called to come back in. Of course I was nervous as a fugitive on the run, but I went in and was told that I needed to see a Reproductive Endocrinoligist, because my GYN did not specialize in that and she thought that I should began to try to have another child as soon as possible, given my family history, health, and health history, the sooner the better, if that's what I wanted to do! WOW! I didn't know how to feel and I didn't know the questions to ask her, because I wasnt quite sure of what she was saying! I knew then that I wanted to have another child and after the scared and excitement of my previous situation, I had begun to hear my biological clock tick, I just didn't know that it was going to be quite this soon. Basically what she said to me, was that I wasn't ovulating and she didn't want to prescribe me anything for that until I had seen a RE. So she reccommended me to one of what I think is the BEST hospitals in the world (see links for details)! I called and made the appointment with the RE and was scheduled to see her within the week. I went in, she examined me, gave me medication to start my cycle, and then ordered me to call her on the day that my cycle begun so that we could schedule blood work on another day of my cycle. About 10 days after I took the pills, I called, she order blood work for me, and then told me that she would call me to come back in a few days to review the results. I still had no clue of what to think or what was exactly happening for me and to me. I went for another round with the "blood work" guys and went back to Doc to review my results, and they were the same as what my original GYN diagnosed and they were that "I was not ovulating" so that is why my cycles were irregular and probably would continue to be that way until I figure out which direction I wanted to go in. So she asked if I was in a position to began fertility treatments right away or if I wanted to go on Birth Control, I told her that I needed to think about it and talk it over with my partner and then I would call and let her or the nurse know what I was going to do. She didn't pressure me and told me that it was fine and gave me the number to call. After a conversation with my partner, my mother (yeah we're close like Michael Jordan and Scottie Pippen back when they were playing for the bulls), and a long prayer with the good lord sitting on the floor in my bathroom, we all decided that it was better safe than sorry, so we were going to try to concieve. I was happy with what we had decided and called to the doctors office that same day to give my decision. I was then scheduled for another office visit. I went my RE explained to me in detailed what was going to happen over the next few months, and began fertility treatments.
When I had begun these treatments I had not yet been diagnosed with PCOS, because all of the test, weight and age, showed that it was more than likely just a bout with annovulation, and with the concerns from me, my health history, and my age, this seemed like it could be rectified fairly easily (again how fitting). I was given medication to start my cycle again and Clomid to induce ovulation and orders to call in for blood work on various days of my cylce. I believed in all of my heart that this was going to be a "cake walk" for me, I was WAY WRONG! First Cycle, no luck! Second Cycle, no luck!, Third Cycle, no luck! However there were a lot of side effects from the meds, like making me absolutely NUTS! I was so emotional, that I got tired of myself, it had begun to take a toll on my relationship, and my self worth, until I decided to just stop taking the pills and going in to get stuck with needles every month.
When I had finally come to this conclusion, it wasn't easy, because I was in "Full Blown Trying To Conceive Mode" and those of us out there who are in this process or have been in this process, know just how organized, schedule maintaining, and grueling yet sweet the process can be. But it was stop, or Bust! I chose option A. I called my RE and she told me to do a rest cycle, and then to come in for another exam and more blood work. As most of us may know a rest cycle is suppose to be maybe a month or two, mine was 4 months. I had found someway to just let this thing go, and tried to move on with my life, but each month that I didn't get a menstrual cycle I took another HPT unknowingly to my partner and grew a little angrier, a little sadder, a little less of everything. I felt like a failure because Childbearing and Child Birth are the two things that women are suppose to just be able to do, and I wasn't able to do that. I do have a 10 year old daughter (I'm, currently 27, you do the math) and I had her with ease (of course it was a suprise) but the fact is, I felt like I did it before, why couldn't I do it again?
Four months had passed and I began to get worried, When I was taking clomid my cycles were regular and I was ovulating, however as soon as I stopped, back to the same old thing, I had 1 cycle after the clomid and that was it for the next 3 months. I called to the doctors office and I scheduled my appointment to come in, I figured that I would just be going in to get my next round of instructions. I was WAAYY WRONG AGAIN! When I went into the room and I changed into my doctors outfit (you know the wonderful robe, skin, and sock ensemble), waited for my nurse to come in to do the prep work weight, blood pressure, temperature, etc., After that was done, it was time for the "Coup de grace" , my RE entered and asked how I was, how I had been feeling, and any changes that I was aware of with my body? I told her that, of course we had stopped trying, and that I had not had a regular menstrual cycle since the month after I stopped taking the clomid, and that, that was pretty much it. She noted all the changes in my chart and then told me of the next step in the process, but not before telling me that I had gained 25 pounds since my initial visit to her about a year ago, I've always been a big girl so that didn't sound like news to me, but to her it was, she went on to ask me if I had to shave contiously, and to examine the dark skin around my neck, under my arms, the hair on my face, legs, arms, and chest, the amount of weight around that was around my belly area and declared that I had PCOS. She told me that my initial blood work did show signs of this, but the weight gain and distribution along with the other things that had happened to me, lead her to make the call right then and there. She had hoped that with the clomid, it would rectify the annovulation and help me to concieve and that PCOS wasn't an issue. She explained to me that I was going to be put on Metformin, in which I'm on now and am currently still taking, and that once I was finish with this dose I would be scheduled for test to see if it was helping me with the insulin resistance, the weight issues, and the hirsutism, and also to see if it had helped with my cycle (all though this medication was not directly to help with that). She explained that this was the first step to getting healthy, along with life style changes to help with the weight, and that would hopefully help with the irregular cycles, which would ultimately help me to conceive, but first things are first.
When she explained all she had explained, when I had understood all I could understand, there I sat wondering what was going to happen to me. Was my daughter destined to be an only child, was this syndrome going to consume my life, was I going to have to be on this medicine forever, how long had I had this, and how did I get this, why did it just start all of sudden, what else can be done, how long does this last, what is happening to ME? My guess is that all of those questions were written on my face, because before I had a chance to speak she blurted out to me, Robin it's ok, it can be reversed, but it doesn't neccessarily go away, it's not infertility, it's just that you're going to need some/maybe a lot of help, it's not type II diabetes, but we definitely want to do something so that we can prevent it from becoming that, you're not going to need to have gastric bypass surgery to lose the weight, but we need to devise a plan to help you out in the process, The list went on, and all I heard was, PCOS, You Have It, Now Deal With IT!
As said earlier, it's been 6 months since I was diagnosed and that's what I've been doing dealing with it! I've been taking the Metformin and am scheduled to finish my pills next week and then I am suppose to go in for the screenings, and to get my next steps! I must say so far, so good! I decided to write this because I wanted to put a real face to this thing, and real emotions to this because those of us with the syndrome/disorder are aware of the signs and symptoms, and reasons for this thing for that matter, but I don't think that we've been heard, just because it's an Almost, but not quite, condistion doesn't mean that we don't still need a shoulder to lean on, or cry on, or to be heard for that matter. The signs and the symptoms can be enough to deal with, along with all of the physical changes that we have to go through and wouldn't it be nice to have someone just understand instead of ask! So, having said that! I understand! Do you?
I urge all of you out there to let me know of your situations and your stories and maybe we can all help each other out at some point and time in this process. Thanks for stopping by and thanks in advance for sharing! Until then, Happy Shaving! :)
PCOS and Medication VS PCOS and Weightloss
Was Medication (Metformin or Clomiphene) or Weightloss More Effective For You?
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Comments
I'm sorry to hear about all of your problems, and congratulations on your new baby!
Funny, I came to your blog because I totally agreed with what you said about Jon & Kate plus 8 (my fav show)...so I just wanted to check it out.
Anyway, Im a mom of 2, 39 years old. I was diagnosed with PCOS back when I was about 27/28...Basically I was having fertility problems and on one of the blood tests one number was higher than another number and it should have been the other way around and that meant I had PCOS according to my gyn. He didnt put me on any meds for the pcos - I guess he suggested I lose weight (what else is new)...but since I was trying to get pregnant he felt I now needed help of drugs and put me on clomid...first cycle nothing, second cycle Bingo (thank god) and my first child (daughter) was born. I had gestational diabetes during pregnancy and then ended up having preeclampsia really really bad but everything worked out fine for all involved. A couple years passed with out using birth control I hadnt gotten preg again. I wasnt too ready to aggressivly start trying though. Another year or so passed and I was diagnosed with type II diabetes. He put me on Metformin and mentioned that it can cause you to be more fertile. That seemed to do the trick because after a few months I was preg with my son. (no complications with my sons pregnancy except that I had to take insulin because the meds are not safe while preg). Being on insulin I prob kept my sugar in the best control its ever been on. Anyway I just wanted to share my story with you incase it helps you in anyway...even if just to know you are not alone.
Hi Amy thank you so much for stopping by, you can't even imagine how much it means to know that I'm not alone and it also helps to know of the success stories! I really appreciate it! I'm glad that everything worked out for you! I really appreciate the comment and the well wishes! Wow about you're story, sometimes the information the Docs give us can seem so grim, but then we here real life stories and it puts our heart at ease. THanks again! Stop by my Hubs or Blogs anytime. I do have a hub on here about J & K and I love that show as well, good bad, or otherwise I think Kate, Jon and the Kids are Great!
JusRobin,
You are definitely not alone with the PCOS. Thanks for sharing your story!
I have PCOS too. I have never tried to get pregnant so I have never had PCOS addressed from that issue. I have had the issues of hair, regular periods, concern over weight, blood pressure, and isulin/diabetes addressed to some degree. At times I feel so unfemine due to the fat waist, unwanted hair and anxiety, so much so I never, ever wear plaid!
I was first diagnosed because I had high blood pressure before I was 30. That always bugged my doctor, so when I asked her about seeing a dermatologist for acne a light bulb went off in her head. It was a good thing on her part and I have always been grateful that she so quickly put the pieces together. But I have had problems with doctors, including an endocrinoligist, insurances, GYN's not understanding fully or wanting to address anything deeply unless you wanted to get pregnant. That has been frustrating. Plus, the syndrome was not understood well 10 years ago and still seems to be somewhat of a mystery of what to do with each individual. Then there is my own lack of knowledge about the condition and the options. (Of course, I am not a medical professional.)
My first route of treatment was to take Aldactone. It did little to nothing. I started having severe PMS. When I talked to my GYN, who had diagnosed me, he gave me an antidepressant, told me if it didn't help to see a psychiatrist and to stop the Aldactone if I didn't think it was helping, that my testosterone level wasn't that high anyway. I think that was one of the last times I saw him.
Next I heard about the problems with Insulin Resistance and asked my medical doctor about that. She was good enough to talk to an endocrinoligist about possible treatment with Metformin. He told her it was an unacceptable "standard of treatment" for PCOS. He specialized in diabetes. Finally a GYN (a new one!) put me on Metformin once it became a standard treatment.
Finally I was sent to an endocrinologist to decide whether I really had PCOS or an adrenal gland disorder due to a high DHEA level. He confirmed my diagnosis with PCOS but refused to really address anything other than confirming the diagnosis. He would not even write an order for me to see his nutritionist to address diet changes. Doctors are quite baffling at times to say the least.
The Metformin worked best in that it got me to have regular periods and I finally established for myself that I was not totally crazy but really suffer from severe PMS. At this time I feel I have found that out on my own over many years and much difficultly. I feel rather angry at times that the issue was not addressed with me in a more organized and progressive way. I realize that some of the failure for the appropriate treatment was due to the lack of medical understanding of the condition, but I also think some of the specialists failed me because they could not see beyond their speciality even when another MD was referring me for help or take the time to explain the host of problems PCOS can cause and how to best treat me individually.
For about two years now I have been so frustrated and disappointed that I have given up. That was not a good decision on my part! Having come to my senses somewhat I have seen a new GYN.
Now I am to try birth control pills. This time the GYN has convinced me that I can trust her knowledge and that she has a plan that will develop as she learns more about what is going on inside my body. She is planning on my return for follow up labs, an ultrasound and in a few months after the pill has had time to have an effect. Unless of course, the recent labs show that another route should be taken.
That has left me hopeful that perhaps the PCOS can be addressed wisely. May my hope not go unfulfilled this time. I definitely would like to be healthier.
I hope for you too and all the other women with PCOS that you receive good and wise treatment and medical advice.
The best to you!










allshookup says:
16 months ago
I so feel for you. I have alot of issues with my health, but not this particular one. I didn't know until I was pregnant that there were so many things that could go wrong. You are in my prayers.