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How has PCOS changed me? January 29, 2010

Filed under: Uncategorized — Danielle Brigance @ 7:30 pm
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Since I posted about what PCOS is I thought I would post about how it has changed my life. Prior to finding out about PCOS I knew something wasn’t right. But, I never envisioned that it would be something like this. When I first visited an ob/gyn because of my "period problems" I was told to go on birth control and when I was ready to try to get pregnant to come back. The ob/gyn at the time did no tests, ultrasounds or anything. Didn’t try to diagnose the problem, just tried to mask the symptoms.
I went on birth control for 2 years and then Jacob and I got married. We got married in October and in December I had a miscarriage. I had no idea I was even pregnant, but I knew the bleeding I was experiencing was not normal. After that I was determined to have a baby. When I went back to the ob/gyn I was told to "try naturally" for a few months and then he would do tests. Of course I knew it wouldn’t work….because my "period problem" was that I never knew when it was going to start or end. I would have months and months of spotting and then months of nothing, where I would get BFN after BFN. I finally went back and had bloodwork done. The bloodwork showed that I had PCOS. When the dr. called and gave me that news I immediately went to the internet to find out everything I could about it. My first feeling was anger. I had practically every symptom on the list, yet he had not tested me 3 years earlier. I was prescribed Clomid 50mg for my next cycle and immediately got pregnant! Only that by the time I got a positive pregnancy test I was already spotting. Called the dr. at 6:30 in the morning and was told not to call back "unless you feel like you’re bleeding to death." Thank God for Jacob’s Aunt Nancy who is a nurse and has had several miscarriages herself. She knew about this dr. and told me I needed to get out of there. She gave me the name Tracey Lakin. I immediately called and scheduled an appt. with her, but it was several weeks out. In the meatime I proceeded to miscarry. By the time I had my appt. with Dr. Lakin I had to explain over and over about the miscarriage. Dr. Lakin did lots more testing to confirm the PCOS. We did several more cycles of Clomid. Some worked and some didn’t. I ended up having another miscarriage under Dr. Lakin’s care. I have to say she was much more caring that my previous dr. She called me herself after hours to tell me what she thought was happening. (My numbers weren’t going up like they should. And while she was concerned about the pregnancy failing she was more concerned about my feelings.)
After several failed cycles we (Jacob and I) decided it would be best to take a break from trying to get pregnant. I was still taking Metformin (for blood sugar) and was told to "be careful" because sometimes Metformin can regulate your body enough for you to ovulate on your own. I honestly didn’t think that would happen because I had been taking it for a while and never thought I was ovulating on my own. I was going through some major depression issues and insomnia. I got medication for both of those. One day I told a friend that I felt like I needed to test. We laughed it off as having withdrawls from not testing in so long. I found some leftover pregnancy tests one night while Jacob was out. I found that to be the perfect time to secretly test and hide my evidence. To my surprise I tested and saw the quickest darkest line ever! I immediately headed over to CO to ask if old tests would give a false positive. They assured me that no it wouldn’t, but that I should test again. I had 1 test left and got the same result. I called Dr. Lakin the next day. The rest is history!
Wow, that turned into a fertility journey!
After having Lexi I’ve felt a whole new side of PCOS. Now that I’m not worried about infertility, I’m noticing all the other symptoms more. My weight is out of control. l have migraines that I can’t control. Insomnia is starting to come back. My thyroid is elevated. My blood pressure is elevated.
Apparently my latest fasting glucose/fasting insulin level was good because Dr. Lakin decided not to put me back on Metformin for now. I wish there was a "Women’s Dr." that’s not necessarily an ob/gyn. Someone who understands PCOS and will treat the "non infertility" side of it. I’ve been doing tons of research hoping to find the answers.

 

PCOS-polycystic ovary syndrome

My journey with PCOS is a long one. It started way before I was officially diagnosed with it. But, I just want to break down PCOS and some of the things it can cause.

Polycystic ovary syndrome is a health problem that can affect a woman’s menstrual cycle, avility to have children, hormones, heart, blood vessels, and appearance. With PCOS, women typically have:
high levels of androgens.
missed or irregular periods
many small cysts in their ovaries.

About 1 in 10 women of childbearing age has PCOS. It can occur in girls as young as 11 years old. PCOS is the most common cause of female infertility.PCOS is the most common endocrine disorder among women in their childbearing years, affecting 6%, or MILLIONS of women.

The cause of PCOS is unknown. Genes are thought to be one factor. Women with PCOS tend to have a mother or sister with PCOS. Insulin is thought to be another factor. For many women with PCOS their bodies have problems using insulin sot hat too much insulin is in thebody.

Some symptoms of PCOS:
infrequent menstrual periods, no menstrual periods, and/or irregular bleeding
infertility
increased hair growth on the face, chest, stomach,back, thumbs, or toes
ovarian cysts
acne, oily skin, or dandruff
weight gain or obesity
insulin resistance or Type 2 Diabetes
high cholesterol
high blood pressure
male-pattern baldness or thinning hair
patches of thickened and dark brown or black skin on the neck, arms, breasts, or thighs
skin tags, or tiny excess flaps of skin in the armpits or neck area
pelvic pain
anxiety or depression
sleep apnea
I would like to not that these symptoms will vary from person to person. You may be like me and have almost every symptom on the list. Or you may have very few symptoms.
Tragically, many physicians see PCOS as a "cosmetic" problem when young women complain of the symptoms. Many physicians do not realize that PCOS has far-reaching and potentially devastating consequences.

Basically with PCOS, the ovary doesn’t make all the hormones it needs for any eggs to fully matrue. Follicles may start to grow and build up fluid. But no one follicle becomes large enough. Instead, the follicles remain as cysts. These cysts also make male hormones, which also prevent ovulation.

The treatments for PCOS will vary. For women who aren’t trying to become pregnant birth control pills can control menstrual cycles, reduce male hormone levels, and help clear acne.
The diabetes medication Metformin or Glucophage has been found to help with PCOS symptoms, although it is not FDA-approved for this use. Abnormal hair growth will slow down, and ovulation may return afer a few months of use. Recent research has shown Metformin to have other positive effects, such as decreased body mass and improved cholesterol levels.
Lack of ovulation is usually the reason for fertility problems in women with PCOS. Several medications that stimulate ovulation can help.Clomid is usually the first choice thereapy to stimulate ovulation.
Lifestyle modification Keeping a healthy weight is the main way to manage PCOS. However, when I was trying to get pregnant it was un-nerving to have drs. continue to tell me, "if you just lost 5 pounds it would help."PCOS can be managed with diet. But, PCOS also makes it very hard to lose weight. Even if you are on a very strict diet, with PCOS, the weight just seems to keep holding on.
The list of health problems associated with PCOS is as awful as the list of symptoms:
More than 50% of women with PCOS will have diabetes or pre-diabetes before the age of 40
Women with PCOS have a four to seven times higher risk of heart attack than women of the same age without PCOS.
Women with PCOS are at greater risk of having high blood pressure.
Women with PCOS have high levels of LDL cholesterol and low levels of HDL cholesterol.
The chance of getting endometrial cancer is another concern for women with PCOS.

PCOS doesn’t go away with pregnancy. There appears to be higher rates of miscarriage, gestational diabetes, pregnancy-induced high blood pressure, and premature delivery in women with PCOS. With the exception of gestational diabetes, I had all of the above. I suffered 3 miscarriages before I had a successful pregnancy with Lexi. Pregnancy induced high blood pressure eventually put me on hospital bedrest, and Lexi was born 4 weeks early, and spent 9 days in the NICU.

Possibly the worst thing I found while doing research for this post was a list of Women’s Health: State Rankings. The rankings are based on whether states have adopted 67 "key women’s health policies." The only one of these met by all the states is Medicaid coverage for breast and cervical cancer. Only 3 states met more than half of these policy goals. My state-Oklahoma- ranks 47. That was an F ranking. Go HERE to see where your state ranks.

If you think someone you know could be suffering from PCOS, please forward this blog to them. I so wish someone would have told me about PCOS while I was trying to diagnose myself.

I found the information for this blog at:
www.womenshealth.gov
www.herplace.com

 

People of the medical profession: take note January 26, 2010

Filed under: Uncategorized — Danielle Brigance @ 8:53 pm
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Let me start out by saying that I did not go to medical school. The only medical things I know are the things that have effected me in some way and I have heavily researched.
Let me also say that I have PCOS (Polycystic Ovary Syndrome.)

Around September 2008 I became overwhelmed with life in general. I had gone through 3 miscarriages and felt that I was never going to have a successful pregnancy. My husband and I decided that we would take a break from trying to get pregnant. It had taken a toll on our relationship and we knew we needed time to concentrate on us. Since I knew we were taking a break from trying to get pregnant I went to see my PCP (primary care physician) about depression. I had an overwhelming urge to stay in bed all day every day. On days when I did get out of bed and go to work I counted down the hours until I got home. As soon as I got home I went straight to bed. Not necessarily to sleep, just to be by myself. That was when I started the journey of anti-depressants.
Pill #1: anti-depressant
Towards the end of my pregnancy with Lexi my blood pressure got out of control. That’s why I ended up on hospital bedrest. They thought my bp would even out after I had Lexi, but it never did.
Pill #2: blood pressure medicine
In the process of finding a new PCP I had bloodwork done. My thyroid level came back wonky. Said, dr called me to say in 6 months he would have it retested. 6 months didn’t work for me. I know hypothyroidism can be a side effect of PCOS. I called my ob/gyn who had bloodwork done and found that in fact my levels were still wonky.
Pill #3: thyroid medicine
Pill #4: birth control

I have had trouble sleeping for a long time. I remember having to take Tylenol PM while I was still living with my parents…around 2004? When I started taking anti-depressants I asked for something to help me sleep also. I was prescribed Ambien, no questions asked. When I had trouble sleeping during my pregnancy my ob/gyn prescribed me Ambien, no questions asked. When Lexi came home from the hospital I didn’t need anything to help me sleep. She was waking up every few hours to eat, and I needed to be able to wake up and take care of her. And by the time bedtime rolled around I was exhausted. Now that she’s almost 9 months old and sleeping for approximately 12 hours straight at night, I am having a really hard time sleeping. After she goes to sleep around 8:30 I start “winding down.” For me, it’s a process. There is no just go to bed and lay my head on the pillow and fall asleep. I go lay down betwen 9 and 10…fall asleep around 12 or later. Then, get up when Lexi gets up.

Fast forward to today:
Go to a new dr. He asks me the routine questions of when I go to bed and when I wake up. Well, there’s not really an answer for that because I fall asleep whenever I finally fall asleep, and I get up when Lexi gets up. I need to be able to fall asleep at a decent time because I never know when she’s going to wake up in the morning. He proceeds to tell me that he believes I am in fact getting enough sleep. Maybe I should set my alarm for 6 AM every morning and after a few days I’ll be tired enough to fall asleep. That I don’t sleep because I’m depressed. That I need to change the hours I’m trying to sleep.
Nothing was accomplished by going to see him. I understand that you can become chemically dependent on Ambien and other sleep-aids. I understand that he’s a dr. and I’m not. What I don’t understand is how the advice he gave me makes no logical sense. Did he think before he spoke? Did he know that I would leave there practically in tears because I was so frustrated? I’m tired of feeling like no one is listening to me. I’m tired of feeling like I’m a crazy person. But, most of all, I’m just tired.

Not that any medical professionals read my blog, but if they do:
Please think about your patient’s feelings. Please don’t treat people as if they are stupid. Please know that some people do know a lot about their conditions and the medications they are taking. Please don’t think that all people are drug-seekers who are just looking for a high. Some people really need the medications they come to you and ask for. Maybe they did a lot of research about their symptoms and think they have found something that could help. It is not at all polite to treat them as if they are stupid.

 

2010 December 31, 2009

Filed under: Uncategorized — Danielle Brigance @ 9:05 am
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I know I shouldn’t make New Year’s Resolutions because I never stick by them and then I get all upset with myself. But, I am going to set some goals for myself in the coming year.

Goal #1: Get my weight under control! I just found out that my thyroid level is high and I will be starting Synthroid as soon as I can get to the pharmacy to pick it up. Hypothyroidism comes with PCOS, so it’s been surprising that mine hasn’t been high until now. My PCP wasn’t very proactive about the testing so I asked my ob/gyn and she gladly had it retested.

Goal #2: Be a better wife and mom. It seems like with stress and everyday life my job as wife and mom falls by the wayside.

Goal #3: Find a job. It’s officially been a year since I got fired from my last job. I need to step up the job hunting to another level.

Goal #4: Save money. That’s one of those things that I always want to do, but find it very hard to do. There’s always something we could buy with a little extra money…but really this isn’t going to happen until I find a job.

Goal #5: Study the Bible more and get closer to God. This is something that always ends up falling by the wayside when I get stressed and overwhelmed. I know if I would push this to top priority I probably wouldn’t get so stressed and overwhelmed.

That’s about it, I guess. Hopefully 2010 brings everyone closer to completing their goals and following their dreams!