Over with

        Well on Wednesday the 12th, I had my hysterectomy. I cried during the prep for the operation. I just broke down. I think it started when the first nurse made a comment about "Getting Rid of the Plumbing" like it was no big deal and something that all women my age do. I told her that no, I didn't want this to take place. I wanted another baby. This wasn't my choice. Cancer sucks! I had to stay overnight in the hospital but was able to come home the following morning. So far, I have done nothing but lay around in bed. It's already getting to me. I am not lay around in bed all day long type of person. I am suppose to remain here for at least a few more days. I just might go stir crazy.

Time is Quickly Ticking Away

My hysterectomy is now literally only days away, 4 1/2 to be exact. Sad and scared doesn't even begin to describe how I have been feeling as we closer to the date of this forever life changing surgery. I think without the Lexapro, I wouldn't be able to deal with daily life right now.  My 9 1/2 yr old son is not taking this well, he gets so upset. He's clingy and will cry at the drop of a hat. It's killing me to see how this is effecting him. He's scared, he's sad too. You also learn just how many friends (and family) you really have at a time like this. I just wish that people took the time to try and understand, this is not a choice and there are no other options for us to expand our family. This surgery will finalize everything for us.

Some events (days) harder then others

Had a hard morning in church, it was baby dedications and to top it off one of the worship singers was very pregnant (not to mention it's exactly 31 days to my hysterectomy). It was like I was being slapped in the face with what I couldn't have or do. I tried to hard to contain my composure. However, I just could not stop the tears from flowing or the heart from feeling broken. Why do something (or days) have to be so hard, so in your face?

The real me is finally back!

I went to the doctor last Monday, and admitted to her that I was battling deep depression and anxiety some in part to my current health issues. I had her put me back on the Lexapro that I was on prior to having our son. Let me tell, you a week later, I can already tell a difference and feel like my old self is returning. Sometimes we need to admit when we need help and do what it takes to make things right again. There is nothing wrong with admitting your depressed and need some medical help.

Stop thinking you know me!

I am tired of people thinking that they know me and what I am feeling while I am going through this. Only I (and the Lord) truly know me that well, and only He and I know what I am feeling at this point in time. I am tired of people assuming that this was my decision (and acting/treating me like it was), that I elected to have a hysterectomy. No! No! No, I didn't! I didn't choose this for me, I was told & informed that this was the best choice for my health, my body and my life expectancy. If I don't want to chance leaving my young son motherless, than I have to take care of myself. Unfortunately, in order for me to do that, I have to have a hysterectomy. Let me grieve, it's a part of the process. I am not just grieving the loss of my uterus, but more importantly I am grieving the loss of my ever being able to have another child. Even though I am almost 40, it's still possible to have a child as long as you have all the proper parts and you body is producing eggs. So you see dreams are being murdered as far as I am concerned. Yes, I am going to take offense at this time of those who chose to complain about the 500 million children (I know that is an exaggeration --- but hopefully you see what I mean) God has chosen to bless them with. I am going to take offense when you're 8 months pregnant and complaining about just how awful being pregnant for the 100th millionth (I know another exaggeration) time is. I am going to take offense when you can never find a positive thing to say about your children, your spouse, or your marriage. I don't care if you don't like that I am going to be straight forward and tell you just exactly how I am feeling at that time about what you are gripping about, because yes, as far as I am concerned that is exactly what you are doing and how it is coming across to those around you (whether they choose to say so to your face or not, or even worse yet join you in your gripping session). You can pretend that you didn't realize what you were saying was offensive but deep down you know you were complaining and gripping about your blessings. Why am I the one being punished, while all you do is sit back and complain about what God has given you? Granted I haven't walked in your shoes or gone through what you have, but then again you haven't walked in mine either. You can blog about your perfect parenting skills and boast about how wonderful of a parent you are but when you sit there with your peers and choose to do nothing but look at the negative, it makes all your blogging meaningless. If you truly have walked the path of infertility and/or the loose of a pregnancy or child, then you of all people should know to think before you speak. How did you feel when these things were happening to you? Did you like to sit there and listen to people complain about their blessings all the time? Did you just want to tell those around you to stop? I do! My child isn't perfect by any means, but he is my blessing. I choose to look to what he adds to our lives, not takes away from it (which in my book, is nothing). I had over 10 yrs of being childless, to go to spas, shopping trips with the girls, movies and date nights out. He is only going to be a child for such a short time, there will be plenty of time after he is grown up to go get a pedicure, go shopping again with the girls, to go out alone to movies or dinner. He is not an inconvenience in our lives. He is a part of our lives. He makes our lives richer not poorer.

Date for surgery set

Well, I received my appointment information in the mail this afternoon. Who know that opening a packet from a hospital could make one burst into uncontrollable crying. I am sure though it happens far more than most think that it does. Sometimes they are tears of great joy but most often probably tears of anguish, as mine were. It's like it's now chiseled in stone, nothing short of a MIRACLE is going to stop it from happening. It's so final. It doesn't help that I am feeling lack of support from certain family members (no, it's not my husband). I don't want to get any further into that can of worms, so I will just leave it at that. 
I will be having the Da Vinci (robotic) hysterectomy. Unfortunately, I do have to have the cervix taken at the same time. I was hoping that this wasn't the case. However the cervix is part of the endometrial system, therefore, there could be traces of the the Endometrial Hyperplasia in the cervix itself. Which if it isn't removed now could turn into to cervix cancer and require a 2nd surgery or worse. Kind of like playing Russian Roulette with your life and health. So, they will be taking the uterus and the cervix. Unless they find something wrong with the ovaries, they will be leaving them. That way I wont be sent into immediate and early menopause. They will not do a traditional hysterectomy unless there is an emergency, like they nick the bladder or the colon and need to make repairs. This will most likely be an out patient surgery, that is unless they nick something and need to do a more invasive surgery, I loose more blood than I am suppose to (1/2 a cup is about the normal blood loss for the this type of surgery), and/or I have a negative reaction to the anesthesia. 
Not exactly the way I was wanting this journey to end, but I guess at least it is coming to an end. I am sure however, I am far from being off the emotional roller coaster, just will be riding a different kind for a while. 

Appointment with the Oncologist

Today was my appointment with the gynecological oncologist. After a brief visit and exam, I was told I was a good canidate for a robotic hysterectomy. It'll be sometime around mid-Dec. Until I will remain on the Megace to keep the Endometerial Hyperplasia from progressing into full blown uterine cancer. So the wheels have been set into motion, short of a miracle it'll happen.

Realizing

I have been thinking about this hysterectomy, the cancer, the PCOS and the Infertility a lot the past few days. I am beginning to realize why I am so heart broken. Justlike anyone with a disease, I wasn't give the choice to have it or not, I just was one of the "lucky" ones who drew the PCOS card that happened to include infertility. Which in turn killed pretty much all my girlhood dreams of being a mother to 4 or more children. I like all people with cancer wasn't give the choice if I would be one touched by this horrible disease or not, unfortunately for me it came as a package deal with the PCOS (unbeknownst to me). The cancer has taken way all my ability to have a say in not only my fertile years as to if I want more children but also in so many other ways. Ways that I am dreading learning about and going through.
I guess my point is that a majority of women who get hysterectomy are usually either doing so electively, are past child bearing years or have all the children that they plan to have. Yes, while I am almost 40, I am still in my child bearing years and probably would have had another 10 to 15 years left based on my family history. So see it essence something is being stolen from me. I actually will have to go through a grieving process, as if someone dear to me died. Isn't that strange to think of someone grieving the loss of their uterus? I just keep reminding myself that there is a bigger plan and that at least I was blessed with 1 child as there are so many women out there who never even be able to know what it is like to have even 1 child. I am trying to remember to count my blessings, not my losses.

The dreaded appointment (that ended up being a phone call instead)

My specialist called this afternoon. You know how you know it's going to happen, you brace yourself for it but you just end up not being strong enough to withstand the force of the blow? That is how that phone call ended up being for me.

As I stated in yesterdays blog post, the biopsy showed that the Endometrial Hyperplasia has returned. The specialist confirmed this today on the phone. She says she feels that it is no longer in my best interest health wise to continue to try for baby #2. She fears that the Endometrial Hyperplasia will turn to full blown uterine cancer while trying for #2. Having a 2nd baby was suppose to prolong my keeping my uterus. Guess it just wasn't in God's plan for either a 2nd baby or the keeping of my uterus any longer. That final door, has been slammed shut in my face.

I keep looking back, regretting decisions. I could have pushed, I should have pushed earlier to start having children. PCOS was still a "new" thing in medicine, even though as I said in previous posts, I believe it has been around for centuries. No one ever in the in the 20 plus years of having female issues (the last 14 years of which were diagnosed as PCOS) did anyone (except my specialist) ever tell me how important it was to my endometrial health to have a MONTHLY cycle. After I was diagnosed with PCOS, I was told once ever 3 to 6 months was healthy for me. Guess what (unless I was on the pill, which I never was) it wasn't. If I had be being given monthly progesterone treatments and had a monthly cycle, it is far less likely that I would be in the situation that I am in today. Yesterday, I googled Endometrial Hyperplasia PCOS and found that PCOS has now been found to drastically increase a woman's chance of uterine cancer. I never heard this before I met with my infertility specialist to try for baby #2. Though one page did offer suggestions on how to "prevent" it, it never mentioned having a monthly cycle was the most important (weight loss, eat less fat, treat your pcos  with progesterone treatments (which should give you your cycle but doesn't state that) and have a yearly pap (which a pap WILL NOT tell you if you have pcos----please don't think that it will)). I can not stress it enough, if you or anyone you know has abnormal cycles. Please seek a specialist, rule out things like PCOS for sure. If you (or they) are diagnosed with PCOS. Find a doctor well versed in it. Do all you can to keep your uterus healthy and make sure that unless you are on the pill you have a monthly cycle. If your doctor says you don't need to have one every month, find a new doctor. This truly is important, I would hate to see anyone with PCOS in my place, especially if they have read this warning. It's no joke.

Do not take for granted that what should be will be. There is no guarantee that woman will be able to become a mother in her lifetime or that a man will be able to father children in his. Take each day 1 at a time. Stand up for what you believe. Fight for what you want will your whole heart, being and soul. Above all accept (even if you can't understand the reasons why) what God gives you and the roads you will travel down in this lifetime. He has an ultimate reason and a purpose (possibly 1 or more of the following): 1. to teach you something   2. to use you to teach someone else something     3. to use you to be there for others who will follow down the same path     No, God doesn't do bad things to us but He can allow them to happen for a lot of reasons. We just need to lean on Him and be prepared to see why we were chosen to endure.

The last thing that I want to say in this post is more of a reminder, You are your own best advocate. NO ONE knows your body as well as you do. If you do not agree with what the doctor is telling you, you have the right to walk out, to "fire" them, to seek a second (and even third, possibly a fourth (or more)) opinion. Never, ever stand for second best when it comes to your body, your health and/or well being in any fashion of the way. Stand up for you, because most likely no one else will do it for you (unless they are paid to do so and even then, they tend to have their own agenda).

Latest Biopsy Result

Please note this is information that was given to me this morning from my Gyno and not my specialist. Since the Gyno, didn't have anything to do with the biopsy surgery, they are only going by the paper work that they received a copy of from my specialist. So I only have the brief bit of information that I was given by them.

The biopsy came back showing that the Endometerial Hyperplasia has returned. What this exactly means, I don't know. It could be, it's back to where I was in 2010 or it could be now at the A-Typia level (meaning uterine cancer). I have a post-opt follow up with my specialist on Thursday. I will know more then. However, I can tell you I feel resigned to the fact that a hysterectomy is in my near future .... most likely by the end of this year. Chance for baby number 2, dropping drastically .... becoming just a silly whim.

In a strange way I am relieved to have this over with but in another I am breaking in my heart. I hate all this teetering between emotions that I have been experiencing since this all began. I am just ready to accept whatever it is that I am suppose to accept. I realize that I have been given this "cross" to bear by God for a reason, now just to figure out why and how to use it to His Glory.

Will post a more detailed update sometime after I see the specialist on Thursday. It may take me a few day to process and accept what I am told ( I know I just said I was relieved .... see what I mean by teetering between emotions?).

Not So Quick

Well, my DH threw me a curve ball after I had started to accept that we were at the end of our journey. He feels that we should do as we originally decided and keep trying until the end of the year. My specialist agrees with him, she really feels that having a baby is the healthiest choice for me (compared to a hysterectomy ... it would give me up to 3 more years with my uterus putting me at about 43 instead of 40). I saw her yesterday, she said that the lining is indeed on the thick side and there were some polyps present. So I am off again to have another hysteroscopy in the next week or two. After that, if the results of the surgery deems it safe, we will continue on with try. We'll be changing from just doing femara, to doing femara, with monitoring via vaginal ultrasounds for follicles followed by an ovidrel shot. Now to the sad news, my specialist (and I) feel that there was success last month but it didn't become a viable pregnancy. Last Saturday I was plagued with the worst cramping and back pains, I have experienced (except for the other time it was thought that I had miscarried, clear back in 95). Given that info, and other info she felt that it was highly probable that a miscarriage took place. My DH (bless his heart) says that even though this is sad, at least it's a positive because we know that we can accomplish conception....now to try and accomplish a viable pregnancy.

Closing this chapter once and for all

Well, the wait for the answer is over. It's a resounding, no! I am not sure which was hard getting my cycle or having to tell my 9 yr old that he'll never have a little brother or sister. He took it so hard. It just broke my heart. He is so sweet and good with little kids. I know he was so wanting to be a big brother. It's just not in God's plans for him or for our family. It's time to move on, close that chapter forever. I will see the specialist sometime this week and we'll go from there. However, I have decided I don't want to take any more treatments .... this was the final no! I can only take so many emotional roller coaster rides, the trying (that leads to arguing because it was so stressful and things didn't always go as planned), the waiting, the pregnancy tests, just to do it all over again the next month. It's wearing. I need to be happy with the blessing/miracle that God gave me in our son .... focus on him and just enjoy my marriage.
I am hoping that I will be able to keep my uterus though for another 5 yrs or so, by getting month progesterone shots and a yearly check on my lining.

Injection

Today was shot day! The next 48 to 72 hours are so important, yet they are already at the point of overwhelming and stressful. God is in control! I just need to keep telling myself that. I was in great discomfort earlier this evening, my left ovary felt like someone was driving a stake through it over and over again. Hopefully that is a good sign (even though it was slightly painful). :0)

Re-do Update

Today I went back in for a "re-do" of the ultrasound that I went in for on Saturday. Follicle still present (Praise the Lord), grew 2 more cm (now at 16) and the lining was still at the same measurement (HUGE Praise the Lord ----- this morning in the shower He reminded me that they told me that the Femara could cause the lining to be a little thicker). I am to give myself the shot of Ovidrel on Wednesday, we are to BD on Wednesday night and Friday morning (or night). I stopped by a dear friends house who is also a Strong Firm Believer in Christ, her husband, she and I laid hands on the Ovidrel and then we prayed for it to be effective, work, no side effects and that a baby would be conceived. (I SAY AMEN, AMEN, AMEN ..... I BELIEVE ..... PRAISE YOU GOD!!). Now it's all in God's hands, but then again it always has been.

Back to the start????

Went in for my doctors appointment this morning. They were doing an ultrasound and then going to give me a shot of Ovidrel (which will mature the follicles (which is what they were looking for this morning with the ultrasound---one was found (14mm --- needs to be about 18mm) and cause me to ovulate). Ended up not getting the shot and being told there was concern about my lining. It seemed thick, which with the past history of Endometrial Hyperplasia can mean back to square one for us again. My stress level jacked up 100%. The nurse (tech) wanted to talk to the doctor, who wasn't working this weekend. So they said that they would call me back after talking to her. She called back after having spoken to the Dr. for a very long time (not good from my experience). It was decided that for this month I don't need to see the doctor. The nurse (tech) will see me on Monday to do another ultrasound and then most likely give me the shot of Ovidrel that day. If we are unsuccessful this month in getting PG, then I do have to see the doctor next month. It's been a year since my last biopsy/check of my lining. I have two choices either having an ultrasound/biopsy or have another hysteroscopy (surgery). Then decide from there if it's continue on TTC#2 or just go straight for the hysterectomy. Let's just say I am feeling extremely overwhelmed right now and trying to remember that it is ultimately God who is in control and not me. We've done everything we could (and were willing for moral reasons) to do. I also need to remember that no one said that this road was an easy one to travel, it just has been feeling so lonely lately on it. 

Silent and Invisible

When something is part of you, you tend to live and breath it because it has over taken you and your life. I am quite sure that this is usually not the choice when it comes to things like diseases. It is just something you have to learn to deal with. Sometimes it is something that folks know very little about because it's either it's a little know about disease or it's a silent/invisible disease (like Lupus, Polycystic Ovarian Syndrome (PCOS), Lyme Disease, Fibromyalgia, and Endometriosis.... just a few for example), I like to call these the "You look and act fine, so you must not be that sick disease". Being open about your disease is a part of you, in hopes that someone else who might also be suffering will know that they are not alone and/or that it will bring more awareness to the disease. Just because you can't see it, feel it, taste it, touch it, hear it, or smell it doesn't mean it doesn't exist. Yes, I might go on about it and you are tired of hearing about it, but have you ever really taken the time to research and understand what it is like to walk in my shoes and deal with what I have to deal with on a daily basis. I have a dear friend who has Lupus and when we first started hanging out, I often found my feelings hurt because I didn't understand why she would cancel get togethers/outtings at the last minute. I truly thought it was me and she just didn't know how to tell me she didn't want to be my friend after all. Then one day, I choose to finally look past me and research what Lupus really was (after all this was the reason I was always hearing when things were canceled, my Lupus is flaring up today). Guess what? Once I took the time out of my busy day/schedule to learn more about Lupus, I finally began to understand what she dealt with and that she probably didn't enjoy having to call her friends up and cancel on them, that she was suffering. I couldn't see it because to me she looked normal, healthy! But she wasn't her disease is invisible to the naked eye, her body was attacking itself and causing her great pain and discomfort. It's hard for her to get folks to understand this. Once I did though, I was able to be a supportive and understanding friend. I was able to say "It's okay, we'll reschedule when your feeling better or let's just hang out at home and play a game so we can still spend time together if you feel up to it". I learned to adjust according to her needs. She is a dear friend still to this day (14 yrs later). The Lupus has started to show it's toll on her body, it breaks my heart to know and see how much she has been through in all the time that I have known her. I would give anything to switch places with her. She is an inspiration to me and very dear to my whole family. I honestly don't think that if I hadn't taken the time to become knowledgeable about her disease, we wouldn't be the friends that we are today.
My disease is like hers, hard to understand because it's invisible/silent. I look okay on the outside, a little overweight but healthy for the most part. You can't see what lies within, so for you it might be hard to hear constantly how sick I really am. You probably think I am a hypochondriac, someone who just wants or thinks that they need attention. You don't understand that I feel broken as a woman, especially when you see (or know) that I have a child. My child being an only child isn't by choice, it's not what I had planned or wanted, it's what I was given. Yes, I know how blessed I am because I know that there are women who also have my disease who will never, ever know the joys of pregnancy, childbirth or even looking into a face that has some of their features. My heart breaks for these women because even though I was blessed with a child of my own, I still know their pain and have walked in their shoes for 10 years. I never thought I would have a child, that I would never know motherhood. You have heard of my struggles to have another child and probably don't understand why it's such a big issue to me. My child doesn't know the joys of siblings and all that having a sibling means. When my DH and I leave this earth, he'll be all alone. He'll have no one to share his memories of childhood or his parents with. It saddens my heart to think of him with no one who knows the same silly inside family jokes that he does or to help him remember certain family events. He'll be on his own and because of that I have had nothing but the desire to give him the one thing I can't seem to be able to give him. I know what you are thinking because I hear it so often, "Why not adopt" or "You could always adopt". Adoption isn't an option for everyone for various reasons. 
I say all this to say this one thing: Do not judge, ignore, or become frustrated with your friends/family or even strangers when they say they are sick but look "healthy". Take the time to learn about what they have. It just might open your eyes to how they truly are sick and not just a complaining hypochondriac, and how their disease consumes so much of their lives even when they fight against letting that happen every day of their lives. 

Crossing my fingers and holding my breath

Today I had an appointment with my specialist for my bi-monthly intro-vaginal sonogram. WooooHoooooo! my lining was 5mm thick. They like to see it less than 7mm. That means I am in the GREAT range. It was decided that I will go in on the 28th for another intro-vaginal sonogram to see if there are any follicles (eggs) present. This is the only way of knowing for sure if the Femara is working, especially since the ovulation kits aren't showing any peak levels. If there are follicles present, they will give me a shot of Ovidrel that will cause the follicles to mature and triggers ovulation. I was told to Baby Dance (BD) that night, the next night and the night after, if we couldn't the night in the middle that would be okay but try to do it in the morning instead and skip the BD that night. We'll see. All it'll take is one healthy swimmer and we're in business. :0) If this doesn't work, then we are at the end of the line with our TTC#2. DH's doctor said that the best thing a couple could do, was to have a plan and follow through with it. He was glad to hear that we have one and have been sticking to it. Trust me, it's hard to stick to it but I know in my heart of heart that is what is ultimately best for our marriage and our son. The stress on us and our relationship from this whole adventure has been something that has brought us closer over all, had at times brought more frustration, tears, cross words and sleepless nights.

Male Infertility Doctor Follow Up Appointment

DH had his 3 month follow up with the male infertility doctor. His Testosterone levels were 160 when they tested him and now with the Clomid it's in the 430's range (that is where we need it and want it to be at ... while 160 is still considered in the normal range, it's at the very low end of the it). He has to go in in about 14 days to have a count done, praying that this will also show a marked improvement. We also found out that as long as he doesn't get any adverse side effects from the Clomid, he can stay on it as long as needed. We were very concerned about synthetic testosterone treatments due to the side effects but more importantly the effects it could have on Lil' Man being male and around it.
I can tell a difference in DH's sex drive, he is more apt to want it and get frustrated if he doesn't get it when in the mood. While most women would be upset with this, not me! I am loving it! My DH has been pretty A-sexual since the beginning. He could pretty much not get it and be okay. As a woman with PCOS (for those who may not know this fact: Women with PCOS tend to have a much higher sex drive) I pretty much want it all the time. So for me this news about his Testosterone levels being over the 300 that my infertility specialist wants him at and his newly "found" interest makes me a very happy girl. Finally, things seem to be going in the right direction (at least where he is concerned)....now, if I just knew for sure if this Femara was working or not. 

Hubby to go for follow up and an update

Hubby goes in on the 11th of July to the Urologist for a follow up on his testosterone levels to see if the Clomid is working for him. From my point of view it is. :0) He went today to have his blood work done, we want (need) his levels to be at least twice (they were 161) what they were last time. Not sure what will happen if they aren't because that is the lowest that they want them at (300), preferably higher. We are unsure how long he can safely remain on the Clomid, for the time being his prescription is 12 months. I am hoping that he can continue to take it for a while longer. I don't want him to go on testosterone treatments because it has adverse effects not to mention we have a son about to hit puberty and are unsure what the side effects could be for him (my understanding is that it actually can permeate through the skin of the user and effect others who are exposed to it daily). We don't want to do anything that could effect him negatively his reproductive future. It's just not worth it in the long run. 
As far as me, I am still not getting a spike on the ovulation kits. However I am crampy during the few days that I should be ovulating. Not sure if this is a good sign or a bad one. I know if I say something to my fertility specialist, she'll want to start doing costly ultra sounds to see if I am ovulating and that could be up to a couple times a month and insurance doesn't cover it at all. I have a feeling though that it might come to that sooner than later, if we aren't successful. 
We thought for sure (again) that this last month was the month. Had tons of "symptoms", come to find out researching Femara further that a lot of the "symptoms" could also be from it as well as "change of life" symptoms. Great huh? I thought since I was only taking it for 5 days a month, I wouldn't be cursed with the side effects of the Femara. That doesn't seem to be be the issue at all. A nice side effect that seems to be plaguing me (again ---- last time it was from the Megace) is a lot more of my hair coming out. Trying not to let this bother me. It was so hard with the Megace, it took almost 6 months after coming off the Megace for my hair to grow back but not like it was prior to taking it. I guess you have to give a little sometimes to gain something greater. Will it be worth it all in the end, if we are successful? YES!!!! YES!!!!! YES!!!!

Feeling Alone in a Crowded Room

I try so hard to remain upbeat, making sure not to lean to much on others when that is all I really want to do. I want a hug, an understanding caring shoulder to cry on, someone just to ask how are you doing and to actually care about my true response (to see beyond my false replies and forced smiles). Lately, I feel like I am in a crowded room but no one sees me standing there. I am walked around, talked over, and sometimes even made to feel smaller than a speck of dust. PCOS can be so damn lonely and add all the issues/complications, well  you might as well be wearing a huge scarlet letter. You sound like a hypochondriac but your not really, it's just that a disease like PCOS effects so many aspects of your life that it begins to take over not just your body but your whole being.

So Many New Changes

DH is now taking 50 mg of Clomid daily. We should see an increase in sperm production and less of the issues created by low testosterone levels in 4 to 6 weeks (so the middle to end of May). I think this wait may be the hardest, that darn clock is starting to tick louder and louder. I am now taking Famara and not Clomid. I am LH testing to see if I get an LH spike or not this time. We were never truly sure that I had a LH spike (that means your ovulating) while on the Clomid or not. DH has to go back to the male infertility specialist in July for a new semen count. We are praying for an increase in sperm, sperm motility and a higher testosterone level (over 300, his is currently 161). I ended up having to go this past month to get yet another progesterone shot. So that added to the whole waiting issue on my part. No Cycle equals a longer wait. This is detrimental to our time line, because that means a shot for me. That means more time waiting, you have to wait about 5 to 10 days for the progesterone to do it's job once you receive the shot (or pill). The pill doesn't work for me, it does nothing. It's like my body rejects it in that form. So it's a shot or nothing. 3 months ago, I had my first reaction ever to a progesterone shot. Truthfully it freaked me out. If I can't get the shot when I need it due to an allergic reaction then I am in big trouble. We might as well stop and let them do the hysterectomy now. Thankfully with this last shot there was no reaction.

National Infertility Awareness Week

For those of us who have dealt with or are dealing with infertility issues, this past week was National Infertility Awareness Week (April 22-28). Please lend an ear, a shoulder and a hug to someone who is going down this path. It's a hard path to travel. Sometimes we just need someone to listen to us, hear our hurts, pains and struggles without judging us (unless you have walked this path (and even if you have, your experiences were/are different than anyone else's....unique to you and their's unique to them) you can never truly know all the heartbreak and pain that is dealt with on a daily basis). We get enough advice from all our doctors and specialists but they aren't our friends or loved ones. Doctors can give medical guidance but not loving support.

April 27th Jesus Calling Devotional

Today's Jesus Calling by Sarah Young spoke to my heart:

Welcome problems as a perspective-lifters. My children tend to sleepwalk through their days until they bump into an obstacles that stymies them. If you encounter a problem with no immediate solution, your response to that situation will take you either up or down. You can lash out at the difficulty, resenting it and feeling sorry for yourself. This will take you down into a pit of self-pity. Alternatively, the problem can be a ladder, enabling you to climb up and see your life from My perspective. Viewed from above, the obstacle that frustrated you is only a light and momentary trouble. Once your perspective has been heightened, you can look away from the problem altogether. Turn toward Me, and see the Light of My Presence shining upon you. 2 Corinthians 4:16-18; Psalm 89:15

Urologist Update

DH was able to get in to see the Urologist on the 17th of this month. Of course it's not the doctor that my I.F. Specialist recommended but he is in the same office and they said that all the doctors work together. So that is a plus. A nurse (a different one from yesterday) called me this afternoon to tell me that DH's labs and so forth were faxed over to the Urologist. I asked her about the S.A. that he had done yesterday. She said that the mobility was about about 40% (she said it wasn't the worst she has seen by any means). I personally feel if he cuts back and eventually gives up smoking, looses some weight and is given the Clomid, things could turn around for him in no time. Not sure if that will mean a baby for us but at least we wont loose our intamacy. It's very important to me that we don't loose that, its a connection that we only share with each other and no one else, it's ours alone. I still haven't started (34 days late and counting, yep that means a pg test on Monday and a call to the doctors for a shot (probably on Tuesday or Wednesday at the latest). Not 100% sure if we'll be starting the Zamara this month or if we'll be waiting until next month to allow DH to see the Urologist.

I read a really good  devotional in Jesus Calling by Sarah Young this morning. I wont share all of it, but this is the part that really spoke to my heart: When you focus on what you don't have or on situations that displease you, your mind also becomes darkened. You take for granted life, salvation, sunshine, flowers, and countless other gifts from Me (incase you haven't read this devotional, it is written as if Jesus His self was talking to you directly). You look for what is wrong and refuse to enjoy life until that is "fixed."  When you appoarch Me with thanksgiving, the Light of my Presence pours into you, transforming you through and through. Walk in the Light with me by practicing the discipline of thanksgiving.  verses to look up Psalm 116:17; 1 John 1:7

A morning of tears

This morning ended up being a super teary morning. I haven't cried this much in quite awhile. DH (Darling Husband) had gone to have his S.A. done. I get a call about 930 from the Dr's office (which scared me at first that something happened to DH while he was there). The nurse (who in my opinion was very unsympathetic and kinda crass) tells me that they received the results of the blood tests that the Dr. wanted DH to have done. Well 2 of them showed low levels. Which is not good. She was just not listening to me (the nurse) so I told her to have the Dr. call me back personally. Well, when I saw the doctor last week, she never mentioned (even though she is swearing up and down that she did) that if these were low DH would have to go to another Dr. (an Urologist), who could prescribe the Clomid for him. She tells me it can take 2 months or longer to get into one. I  of course start crying just because of the stress all this information was causing me.Of course I am stressing because it means more money, more issues, more time (it can take between 4-6 months for the changes to happen in a man that are necessary to achieve pregnancy) and the list just goes on and on. I don't know if this is God slamming the doors closed and we should just give up, or do we keep trying and see if any door is still open to us and the possibility of another baby? I also fear for our marriage (i.e. intimacy) if we don't go see the urologist because of the issues DH is having.

More Tests and Changes

Had a one on one with my Infertility Specialist (I.F. Specialist) this morning. DH needs to give a new Semen Analysis (S.A.) and some blood work done to check certain hormones. If the hormones test low then they want to put him on Clomid (it helps men to manufacture testosterone naturally ---- he just had a testosterone test done, which showed low levels (which is an issue we have dealt with in the past)).  I will be going off of Clomid and onto Famara, instead. We also set a time (the beginning of 2013) for a hysterectomy if that we are unsuccessful. The Famara is to help increase our chances, it has shown a higher success rate with PCOS women then Clomid does.

The Results from the HSG (Hysterosalpingogram)

Yesterday, I went in to have my HSG test done. It showed complete blockage of the right fallopian tube but the left is free and clear of blockages. This means we still have a chance but it is slightly lessened as there is no access for the sperm to impregnate an egg on the right side and no way for the egg if it was impregnated  to leave the tube and travel into the uterus for implantation. I have to set up an appointment to see my IS (infertility specialist) soon, so we can discuss this at further length. She feels that this blockage of the right tube is do to scar tissue from the 3 surgeries that I had in the last few year due to the endometrial hyperplasia. She said that there could be a slight chance it was just a spasm but she did feel that it was likely because this was the area that was problematic in the surgeries. She said that with the Clomid you tend to ovulate on both sides during ovulation. We talked briefly about doing the transvaginal ultrasound to see if I was ovulating and a shot that will help stimulate the release of the egg. I felt like I took 20 steps backward yesterday. Starting to wonder if another baby is in God's plan for our family. Trying very hard not to get discouraged or loose faith. Need to get on my knees and spend some one on one time with God and truly seek his will.

Yet another test to have done

I have to go in on Monday and have a HSG (hysterosalpingogram) test done. They will be injecting radiographic dye into my  uterus. This is to check to see if there is any blockages, or issues with my tubes and ovaries. I have had this procedure done before, shortly before I got pregnant with our son.

Side note: They upped my clomid last month to 150 mg (6x what we took to get pregnant with our son). Still not 100% sure I am ovulating. Ovulation tests are about as frustrating as pregnancy tests, they never seem to read what I want them too. If after this month (and if the HSG test, shows no blockages or other issues) we're still not sure if I am actually ovulating or not, I will be going in and having a transvaginal ultrasound done to check for ovulation. When ovulation is found then we get busy and I will take a shot that will help with the follicle releasing so it can be impregnated. Praying we'll not have to go that far but time is running out for this to happen. It's hard feeling like there is this huge clock ticking over my head, it adds so much pressure to the situation.

How Can I?

How can I expect others to understand or take the time to learn about what PCOS is. How can I expect compassion about what I have been going through all my life, but especially the past couple of years? When my own husband and family can't. All I pray is that some woman is going down this path in life, that she knows that she isn't alone, strange, broken or less of a woman --- like I have felt all my life.

What a ride

Since I know no one really reads this blog, probably tired of hearing me drone on and on about PCOS and infertility. I feel I can share about these past 2 months and the roller coaster ride we were on. Boy was it some ride! Let's begin with the big secret that very few know about. We've been back on Clomid since November. Was taking 100mg treatments for 5 days a month. Nothing exciting happened the first 2 months. Cycle started like it should have and so forth. Not in Jan though, 28 days passed with no visit from A.F., pregnancy test -. 35 days passed still no A.F. and a - PG test, so I placed a call to the doctor. Wait another 3 days and then come in for a blood test if still no A.F.. Well, still no A.F., so went in for required blood test. Of course it was -. We thought for sure it would come up +. Felt bloated, crampy, tired, queasy and had several other PG type symptoms. Talk about feeling up, only to be sent crashing down. So they ended up, increasing the treatment another 50mg a day for the 5 days. Now I am taking 6 times what I took to get pregnant with our son. Another downside is that the ovulation tests are not showing a positive. So if, I don't get a positive this month or get pregnant, it'll be into the doctors next month after the treatment to have an vaginal ultra sound to see if I am ovulating. Oh the fun of trying to get PG. Hubby has been a trooper. This month we are trying very hard to stick to the every other day schedule. While this should be the fun part, at times it can feel like a job instead of a pleasure.

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)