An Update of Sorts
Hey there,
It has been almost a year since I have given any kind of health update. It's nice to be into the daily life stuff of my disease instead of the more dramatic days of around 7 years ago.
But as many of you know that doesn't mean I am not dealing with things that come up periodically. And the day to day medical routines that keep me alive are still and will always be a thing.
I thought I would write today to fill you all in on some non-kidney health things that have come up and are proving to be a problem. Well really thing that I have been dealing with for a long time and putting off taking care of until my kidney health was under control.
Though never officially diagnosed with it I show and have shown a lot of the symptoms of having endometriosis. Within the past year or so it has been so bad that missing work has become quite frequent. While that sucks I do have a doctor who as far as I can tell believes me when I talk about the pain and sickness that accompanies my period and often the days between as well. After talking to him about how birth control has made me sicker and just dealing with it is getting old and unbearable we have scheduled a laparoscopy.
Now he is considered a great minimally invasive surgeon and has researched my health history a lot. He requested so many files from my transplant office that they had to send him a packet instead a fax. And he has talked to the transplant team at my current hospital as well. He does not want to damage my working kidney but also understands that I need to do something different. The transplant surgeon believes there should not be any problems. My gynecologist is a little more wary possibly just because he has never seen someone with as many surgeries as myself.
Honestly I am hoping that he goes in and sees such a big mess that he has to take everything out and by everything I mean a total hysterectomy. He did already mention that if he sees a problem on the ovaries he will take one or both out and since I have a history of cysts on my ovaries I suspect he will see that and remove them.
As my mom will tell you I have wanted a hysterectomy for quite some time. (At least 12 years since I knew by the time I was 18.) I have never had a desire to be a mom and I have always felt like this organ is not worth the trouble. I deal with enough other things so just take it out. I even joked with my mom at my second transplant that since they had me open anyway why not just take it out while they were at it. One of my many thoughts is that reproductive organs do not keep you alive and since mine are causing problems and could harm organs that are keeping me alive that should be all the more reason to take it out.
I have not shared quite all of this with my gynecologist yet since I saw him in person once and then started crying because he believed me straight away and I have had a few that have not believed me at all. Not having to prove the amount of pain I am in or what my body goes through was a relief. And the fact that he listened to me and even mentioned that with all I have been through in my life I know how to listen to my body was great as well. The only not great part was that since I was crying I wasn't able to tell him "I want a hysterectomy" because it flew out of my mind and was replaced by "he believes me!"
I am sure I will tell him eventually possibly at my surgery because I want him to know I am ok with him taking out whatever.
I have joked a little that right now I am playing by the rules. The sort of unspoken rules that I have learned from other women including my mom are:
Step 1 Try birth control (I realized that this was making me sick after being on it for quite some time)
Step 2 Try birth control with no period (I quickly got sick from this as in my body full on freaked out meaning that my muscle started acting so weak that I almost collapsed in my house)
Step 3 Try laparoscopy to confirm endometriosis and remove lesions (I'm at this step)
Often step 3 gets repeated to remove lesions over and over but I am not going to mess around with that if it doesn't work then on to
Step 4 Hysterecomy
Also birth control gets tried over and over again "Maybe you aren't on the right kind" "Maybe you need to be on a pain management related birth control instead of just birth control" blah blah blah. I know I will get the side effects of meds so I am not messing around with that. Also some of those meds don't play well with my current life sustaining meds and those will win every time when it comes to my health.
It has been quite a frustrating process and I have seen doctors that were not so great and that haven't believed me.
Thankfully I have my kidney doctor's support who has done what he can to help even the times when it was just to say "Yes, you are experiencing the worst medicine side effects. Stop taking that now." Which was needed when gynecologists didn't believe me. And when I started sharing more with my kidney doctor he was like "Wow! It's that bad!" and continues to tell me my kidney is doing good so that we can do something about endometriosis.
Also thankfully I have a gynecologist I really like now. He has taken the time to get to know a lot about my health history including trying to get a picture of how organs post transplant are laid out in my abdomen to prepare for surgery. He has been very understanding. Listening when I speak about what has been happening for years and asking appropriate follow up questions to get me talking more.
So yeah that's what has been going on with my health.
Surgery is April 1st at like 5:30 in the morning or something. And I am honestly praying that when my gynecologist starts the procedure that my lower abdomen is littered with lesions along with cysts on my ovaries so that he has no choice but to take everything out. For me having a hysterectomy would mean one less thing to "grin and bear" among all the other things that my body deals with on a regular basis because frankly I am tired and would like whatever little respite I can get.
It has been almost a year since I have given any kind of health update. It's nice to be into the daily life stuff of my disease instead of the more dramatic days of around 7 years ago.
But as many of you know that doesn't mean I am not dealing with things that come up periodically. And the day to day medical routines that keep me alive are still and will always be a thing.
I thought I would write today to fill you all in on some non-kidney health things that have come up and are proving to be a problem. Well really thing that I have been dealing with for a long time and putting off taking care of until my kidney health was under control.
Though never officially diagnosed with it I show and have shown a lot of the symptoms of having endometriosis. Within the past year or so it has been so bad that missing work has become quite frequent. While that sucks I do have a doctor who as far as I can tell believes me when I talk about the pain and sickness that accompanies my period and often the days between as well. After talking to him about how birth control has made me sicker and just dealing with it is getting old and unbearable we have scheduled a laparoscopy.
Now he is considered a great minimally invasive surgeon and has researched my health history a lot. He requested so many files from my transplant office that they had to send him a packet instead a fax. And he has talked to the transplant team at my current hospital as well. He does not want to damage my working kidney but also understands that I need to do something different. The transplant surgeon believes there should not be any problems. My gynecologist is a little more wary possibly just because he has never seen someone with as many surgeries as myself.
Honestly I am hoping that he goes in and sees such a big mess that he has to take everything out and by everything I mean a total hysterectomy. He did already mention that if he sees a problem on the ovaries he will take one or both out and since I have a history of cysts on my ovaries I suspect he will see that and remove them.
As my mom will tell you I have wanted a hysterectomy for quite some time. (At least 12 years since I knew by the time I was 18.) I have never had a desire to be a mom and I have always felt like this organ is not worth the trouble. I deal with enough other things so just take it out. I even joked with my mom at my second transplant that since they had me open anyway why not just take it out while they were at it. One of my many thoughts is that reproductive organs do not keep you alive and since mine are causing problems and could harm organs that are keeping me alive that should be all the more reason to take it out.
I have not shared quite all of this with my gynecologist yet since I saw him in person once and then started crying because he believed me straight away and I have had a few that have not believed me at all. Not having to prove the amount of pain I am in or what my body goes through was a relief. And the fact that he listened to me and even mentioned that with all I have been through in my life I know how to listen to my body was great as well. The only not great part was that since I was crying I wasn't able to tell him "I want a hysterectomy" because it flew out of my mind and was replaced by "he believes me!"
I am sure I will tell him eventually possibly at my surgery because I want him to know I am ok with him taking out whatever.
I have joked a little that right now I am playing by the rules. The sort of unspoken rules that I have learned from other women including my mom are:
Step 1 Try birth control (I realized that this was making me sick after being on it for quite some time)
Step 2 Try birth control with no period (I quickly got sick from this as in my body full on freaked out meaning that my muscle started acting so weak that I almost collapsed in my house)
Step 3 Try laparoscopy to confirm endometriosis and remove lesions (I'm at this step)
Often step 3 gets repeated to remove lesions over and over but I am not going to mess around with that if it doesn't work then on to
Step 4 Hysterecomy
Also birth control gets tried over and over again "Maybe you aren't on the right kind" "Maybe you need to be on a pain management related birth control instead of just birth control" blah blah blah. I know I will get the side effects of meds so I am not messing around with that. Also some of those meds don't play well with my current life sustaining meds and those will win every time when it comes to my health.
It has been quite a frustrating process and I have seen doctors that were not so great and that haven't believed me.
Thankfully I have my kidney doctor's support who has done what he can to help even the times when it was just to say "Yes, you are experiencing the worst medicine side effects. Stop taking that now." Which was needed when gynecologists didn't believe me. And when I started sharing more with my kidney doctor he was like "Wow! It's that bad!" and continues to tell me my kidney is doing good so that we can do something about endometriosis.
Also thankfully I have a gynecologist I really like now. He has taken the time to get to know a lot about my health history including trying to get a picture of how organs post transplant are laid out in my abdomen to prepare for surgery. He has been very understanding. Listening when I speak about what has been happening for years and asking appropriate follow up questions to get me talking more.
So yeah that's what has been going on with my health.
Surgery is April 1st at like 5:30 in the morning or something. And I am honestly praying that when my gynecologist starts the procedure that my lower abdomen is littered with lesions along with cysts on my ovaries so that he has no choice but to take everything out. For me having a hysterectomy would mean one less thing to "grin and bear" among all the other things that my body deals with on a regular basis because frankly I am tired and would like whatever little respite I can get.
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