This blog is about my journey with Polycystic Ovarian Syndrome (PCOS) and being diagnosed with Endometrial Hyperplasia. Until the diagnoses of EH we were trying to get pregnant with baby #2.
Friday, December 14, 2012
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.
Saturday, December 8, 2012
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.
Sunday, November 11, 2012
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?
Monday, October 29, 2012
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.
Tuesday, October 23, 2012
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.
Tuesday, October 2, 2012
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.
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.
Tuesday, September 25, 2012
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.
Thursday, September 13, 2012
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.
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.
Tuesday, September 11, 2012
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).
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).
Monday, September 10, 2012
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?).
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?).
Tuesday, August 21, 2012
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.
Sunday, August 12, 2012
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.
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.
Wednesday, August 1, 2012
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)
Monday, July 30, 2012
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.
Saturday, July 28, 2012
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.
Thursday, July 19, 2012
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.
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.
Tuesday, July 17, 2012
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.
Wednesday, July 11, 2012
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.
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.
Friday, June 29, 2012
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!!!!
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!!!!
Friday, June 22, 2012
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.
Subscribe to:
Posts (Atom)