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.
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?).
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