Edge of My Seat

I am sitting on the edge of my seat, waiting can be so very hard. Either this wait will bring great joy or even greater sorrow. About 36 more hours and we will have our answer. We haven't told anyone our secret. Even this blog entry wont be posted until after the fact (the test being taken). It's been hard not to say anything this time through with the Clomid. I just felt that since we have been down this road so many times in the past 6 or 7 years that folks pretty much zone me out now when I mention giving Clomid another try. Probably because they don't want to hear about the journey, the dissapointments, the high and low points. Like this one for example, we might have been successful but we have to wait and see, and of course there is a chance that we weren't (again). I am 5 days late, but with PCOS that doesn't mean a thing. I have had some pregnancy symptoms but those same symptoms can be PMS or a variety of other things. It's just not so cut and dry, especially when you have PCOS.

My advice, thoughts and opinions on PCOS

A lot of women  may not be aware that they have PCOS. The list of symptoms is so long and varies so much from woman to woman. It's not a one size fits all disease. Some women are simply "diagnosed" that they most likely have PCOS. A lot of these women will most likely not be given the proper information about this disease. They will be left on their own to figure it out, some will search to find the answers but some will not know the importance of getting the right information until they want to conceive a child. Some women end upl "self diagnose" themselves as having it but not know what to do or where to go after that. Most gyno's knowledge of this disease fall between very little knowledge to moderate knowledge. They don't want to deal with the issues that go with it. You see PCOS has such a wide range of side effects, that a lot of the issues go outside gynecology. If you have PCOS you actually need to see specialists, unfortunately there aren't specialist (at least that I am aware of and trust me I have searched) that deal only with this disease or are 100 % knowledgeable with this disease and are able to deal with ALL the issues and side effects that come with this disease. Really the knowledge of PCOS is still in it's infancy. A doctor who deals souly with PCOS would be ideal, because it's not a one size fits all disease, it tends to vary per customer (so to speak). However that is not the case, you need to see an Endocrinologist and a Woman's Health Specialist (and no that isn't a simply Gyno or Obgyn). Endocrinologist specialize in the field of Endocrine and it's diseases. Now I must be honest the one Endocrinologist that I saw for over 3 yrs never really dealt with my PCOS, she dealt more with my diabetes (which just happens can be one of those wonderful side effects of PCOS). I was referred to her originally for my PCOS by my gyno but she just never dealt with it unless I asked her a specific question in regards to it. I have recently been told a story about someone who also saw an Endocrinologist, who simply told her to loose weight and all her issues would go away and she would be able to get pregnant. Yes, while loosing weight can help a lot with PCOS it's simply is not the end all answer. First of all, to me that is misleading information as she'll still have PCOS and loosing weight simply will not get you pregnant. The true fact is, is that it can help to increase your chance of getting pregnant (but will not insure that you will get pregnant) and it more likely being a viable one, that is it. Yes loosing weight can also help a few of the symptoms of PCOS disappear over time. Second of all, weight is one of the symptoms of PCOS and most PCOS women deal with being overweight. Loosing weight for a PCOS woman is a life long struggle, that can be exasperating and yielding in very little results over a long period of time. We have to 100% harder than average person to loose even a pound. Food simply isn't a PCOS woman's friend. Back to the Endocrinologist, you will need to find one that is knowledgeable in the field of PCOS -- as it seems that not all Endocrinologist seem to be in this area. It may take a little bit of "shopping around" to find the right fit. Before I go any further, please know that this information is just a matter of opinion based on my own personal experiences with PCOS and the stories that I have heard from other women who also have to deal with PCOS on a daily basis. In my circle of friends and acquaintances, I know of at least 11 of us who are journeying through this pretty much little known world of PCOS. My personal opinion is that PCOS has been around since the fall of man. Because of the wide range of symptoms that a woman can have, it went undiagnosed pretty much until the late 20th century. If you think about the Fat Lady and the Bearded Lady in the circus and side shows, to me it seems highly provable that they suffered PCOS and it's symptoms. This is why I say the knowledge of PCOS is still in it's infancy. There is still just not much known about it. I also have noticed a common factor in a lot of my friends, a lot of us seem to have a family member (like a great grandma, grandparent and/or parent) who had Diabetes and/or Infertility issues themselves. This leads me to think that there might be a gene or some other inherited factor to PCOS. While I am pretty knowledgeable with PCOS, that doesn't mean to say that I am an expert by any means. For all I know, researchers have already come to this same conclusion about there being a gene or hereditary factor. I do know that my specialist told me that if I had a daughter that there would be a chance that she would have PCOS too. Okay now on to what I mean about a Woman's Health Specialist. I am talking about an infertility specialist, even if you aren't thinking about or trying to get pregnant. In my personal experience they seem to be the most equipped and knowledgeable to deal with PCOS as a whole. They have a better tendency of hearing you out and giving you the proper knowledge about PCOS. They aren't in a rush to get to the next lady and give her a pap smear and yearly exam, so she can be on her way. They seem to know that PCOS isn't a one size fits all disease. They will have a lot of answers and not just for the infertility side of it. To me they are worth their weight in gold. No just because you see an infertility specialist (make sure that they are knowledgeable in Woman's Health issues not just a get you pregnant doctor --- like "shopping around" for an Endocrinologist, you most likely will have to do so with this type of doctor too) doesn't mean your insurance wont cover it and label you infertile. As long as you are seeing them for health issues and not to get pregnant, your insurance should cover them. So far my insurance has covered everything that wasn't related with trying to get pregnant. What I mean is last year when I was trying to get pregnant they didn't cover the meds, most of the check ups -- including the ultrasounds and the like to see if we were successful. But when they found the hyperplasia and all the surgeries that I had to have to get that under control, it was covered. They have covered all my progesterone shots in the past and present that I have needed to "jump start" my cycle when it doesn't come on it's own. They have covered all the ultrasounds for checking on my ovaries for cysts and growths, even now after the trying to get pregnant and the hyperplasia. And just because you are seeing an Woman's Health Specialist doesn't label you infertile and uncoverable by your insurance company. We've had 3 or 4 different insurance companies since I was diagnosed with PCOS and I have never been denied coverage for it. Basically your health is important, you are your own best advocate. Remember you have to live with your body and your health issues, they don't. You know your body and what works and what doesn't (point in case, I know that taking progesterone pills don't work for me. That I have to get a shot of it. My gyno tried to argue with me and tell me that taking the pills were the new way of doing things. Well while this may be true, it's not what works for me and my body. It may simply be that because I have had to have progesterone intervention so much and it has always been done by a shot, that that is what my body has become accustom to. A sudden high dose of progesterone all at one time, not small doses give over a 5 to 7 day period. To me if a doctor is going to argue with you about what you know is best for your body, then they need to be "fired" by you. They need to be able to work with you, listen to you and come up with a plan that works for you as an individual. Health issues of any kind don't seem to be one kind fits all and therefore treatments will vary and individuals vary. Also please know that if you are dieting, any type of diet (even the PCOS diet), results will vary per individual. What works for one might not work at all for another. We are each unique individuals and because of that nothing really is one size fits all, it's more like one size might fit some and at best, most). Do your research, be knowledgeable and go armed, when you see your doctor(s). Find doctors who are knowledgeable, willing to listen and help. If your doctor isn't, then "shop around" for one that is and will. There is nothing wrong with finding a doctor who fulfills and goes beyond your expectations, because your health is nothing to take lightly. PCOS is nothing to deal with on your own, simply because of it's wide range of symptoms. Like I said earlier ultimately a doctor who dealt souly with PCOS would be ultimate but since that doesn't seem to be a possibility at this time (if you do happen to be a very fortunate soul and have a rare doctor who does this, then let it be known so that others can benefit from them), we have to do the next best thing, take our time and see a couple of doctors. Ultimately try to get them to communicate and even possibly work together, for the betterment of your health. Once again, these are just my thoughts and opinions, based on my own experiences and what I have heard from others who also suffer from this disease. Finally, I want to beseech you, that if you are a woman who suffers from PCOS and it's various symptoms, please share with others your journey, your walks and your trials with this disease. I know it's a very demeaning, demoralizing, de-womanizing disease and something that embarrasses a lot of women. If you are reading this because you know a woman who is effected by this disease, then please go to her, ask her about it and most of all honestly listen to what she has to say. Encourage her to open up with other women and share her experiences. I belief that part of the reason so little is still known about PCOS, is because we don't talk about it openly with each other as women.

Overly Emotional

I don't know why but I am becoming super emotional. I am not sure if it's anxiety over the impending hysterectomy at the end of the year (yes, I know that is over 11 months away). I was telling DH this evening that I think I am going to need to go back on Prozac or Lexapro, possibly before but most definitely after the surgery. I told him it was even possible I was going to have to seek a counselor. I can see even now this far out, that this is going to be a very devastating thing to me. Maybe that is part of the reason my last few posts have been so selfish and whinny. I feel like I am loosing a non-winning battle.

What is it about me?

Is it okay to feel selfish? I feel like no one really cared what I went through last year and will be facing this year. Someone asked me the other day if I had just 1 child, I said yes. I always feel like I have to explain why I have only 1 child. I don't want folks to think it was a personal choice thing. Especially when God told us to go forth, multiply and be plentiful. Anyway I answered her question and said that I had PCOS and that it took us 10 1/2 yrs to get him. She said "Oh!" and then started talking to the gal next to me, like what I said wasn't of any importance (side note the gal she ended up spending 10 or more minutes talking to was also discussing a health issue). I guess maybe to her it wasn't. But this is what I mean by folks not really seeming to listen or wanting to understand. Then there is the issue of others going through various forms of illnesses and getting lavished with attention, card showers and food being brought for their family to have meals for weeks so the person going through the illness wont have to cook. I went through 3 surgeries last year, a cancer treatment, my haired thinned out terribly, I worked hard to loose weight and tried to remain as stress free as possible, I was scared to death. No one gave me a card shower to bring up my spirits, no one cooked ( or brought) meals for my family, and some folks tended to add stress to my life. Why am I always the person who gets pushed aside, over looked and/or stepped on? I often wonder what it is about me that makes this occur so often in my life. I try so hard to be uplifting, understanding of what others are going through, put myself last, do for others and so forth. Sometimes it's just so hard to not think that no one cares! I guess I just am feeling so alone lately on this journey. Yes, I know I have God and my husband, but sometimes you just need something more I guess.
PLEASE NOTE: It's not that I don't care about the suffering(s) that others are going through. It truly breaks my heart to hear of anyone (friend or someone I don't even know) going through an illness or difficult situation, especially ones that are life changing or even in the worst case, life threatening. I tend to go out of my way to do what I can for them, being it something as simply praying for them or going above and beyond that. I don't like to see anyone suffer. I don't do those things to receive back their pity, help and/or so forth. I do it because I truly do care.

Watery Break Down

No, I am not together as I sound when it comes to this whole PCOS and desiring another baby thing. I know that God is ultimately in control, even if my hearts desire is different than His plans for me and my family. When asked what I want in regards to this issue, I always answer "God's Will". I really do want God's Will but I must admit my desires are still there. I want to control the outcome. I want, well, what I want. Yesterday, I had a very intense "talk" with God while in the shower. I had wrote HYSTERECTOMY on the shower door in the moisture. Just looking at the word, right there, in front of my face triggered so much frustration, anger, lack of self and hurt. Without thinking about it, I wrote in very large letters BABY. I started screaming and shouting that I didn't want to have to have a hysterectomy, that I wanted a baby. With so much anger, I wiped off the word hysterectomy. I kept saying over and over that I didn't want that, that all I wanted was another baby. Someone for Edward to have in his life after we were gone. I worry about him being alone, with no other family to share his memories with. I started crying, I felt like I was being punished (I often feel that way, I just don't usually share that feeling with others because most don't understand what it feels like not be able to have a baby without trying day in and day out to conceive one). I don't tend to share a lot of my "real feelings" about what I am going through because most folks tend to shut down and don't really care to hear what it's like to feel like half of a woman (or less). Sometimes I think God hasn't blessed us with another child because I am an awful mother, not worthy enough to mother more of his blessings. I started begging God for my hearts desire, a baby, there in the shower. Sometimes it's just very lonely and I guess all those unshared feelings build up until they have no other choice but to explode. Since I don't share, the only one I can explode at is God. I feel so overlooked and unloved at times, wondering what I ever did wrong to have bear this cross of PCOS and Infertility. I try so hard to look at it like Laura Story's song "Blessings" but I must admit that at times that can be very difficult to do. I pretty much know that my thoughts are safe here because so few take the time to come and read what I wrote. They probably think it's just more whining, crying and poor picked on me. Well maybe it is, but I am the one who has to walk this path in life and I need a way to vent ... that is in part why I started blogging about my journey with PCOS and Infertility.

The Count Down Begins

Well, it's begun, the count down to the hysterectomy. Barring any miracles or emergencies, I will be having a hysterectomy at the end of 2012. It's so final. No, that doesn't mean that I will not have PCOS. I still will, even if they took my ovaries too. At this point though, the plan is just for the uterus to prevent the hyperplasia from coming back and turning into cancer. The chances of that are astronomical, so I have to have this done ... no choice, especially since those chances will increase dramatically when I hit menopause. If a miracle happened and I were to get pregnant then I could put off the hysterectomy until after I was done breastfeeding, since pregnancy and breastfeeding increase the progesterone levels in the body. Which would keep the hyperplasia at bay. Now, I know you are going but what does emergencies have to do with this, well if no miracle happens I have to go in around June/July (or so) and have another surgery, where they will scrap and check my lining. If they find that it's thickened back up and get A-typia (positive for cancer) results back, then I will have an immediate hysterectomy. I do have to say that the thought of a hysterectomy scares me, I have heard so many horrors about them. One is that you loose your mojo, I don't want to loose mine ... I love that for a woman I have an exteremly healthy one. I read though that it's actually do to the PCOS in part. Hey at least there is a plus side to it. :0)