Things have been quite crazy and hectic recently. Due to some family matters I have been out of town for two weeks now. I have had to delay my Lupron shot for a week. I can tell the last injection is wearing off :\. Thankful I have plenty of Norethindrone pills left. I have to go get some blood work done on Wednesday afternoon. Depending on that will determine if I can even have the last Lurpon injection.
Before I mentioned that my Thyroid Anti-bodies were high and my TSH was still in the normal range. Blood work from last month showed that my TSH is almost off of the lower end of the scale. I have become very exhausted, my hair is falling out and just don't feel well. They will be running the blood work to see if my levels have come down, or if they have gone up. I could be developing Hashimoto's Thyroiditis, Grave's Disease or Thyroid Cancer. Hopefully my body is just going crazy and is starting to fix itself. However my TSH has been dropping over the last 7 months. This is just one more thing to add to my plate of hormonal craziness. I am exhausted physically, mentally, and emotionally. For any of the possibilites there is a treatment in which I am thankful for.
Anyways, I am supposed to go to UCONN on the 28th still. Tricare got my authorization and referral corrected and taken care of. :) :) I hope I don't have to reschedule this appointment once again! My thyroid problem has to be taken care of before we can try any type of procedure. You never realize how important your Thyroid is until it is broken!
Well this month is Endometriosis Awareness Month! So if you know anyone that is suffering from the disease send them here. Hopefully they can find hope, and answers from my blog. I know it is not easy to deal with. It is a long and hard road to go down but we can hope for a cure one day! In the meantime we can support one another and take appropriate steps to treat our symptoms. Life would be easier without this trail but it will make us stronger even if we don't see that right now.
Until next time.....
My journey with Endometriosis, Surgeries, Lupron, Infertility, Miscarriages, IVF, FET and Our Future.
Sunday, March 10, 2013
Sunday, February 17, 2013
Round 2 of Lupron
Last week I got my second monthly injection of Lupron. Things are still going much better that the one three month injection :) I think I would even recommend the one month injection for three months to those that are in the same situation I am in.
I am supposed to go to UCONN Fertility Clinic on Tuesday but thanks to the Clinic, my OBGYN and Tricare not talking properly I may not be able to go. I am not very happy about that. I have been waiting for over a month to go! Tricare thought I was having a procedure done on Tuesday which is far from being true. All I need to do is have a consult so John and I can see what our options are and how much the IVF will cost us.
When I got my shot my doctor tried to lift my spirits. He kept reminding me that the Lupron should help me even though the odds are low. Since there was no evidence of trauma or infection to the outside of my tube that the blockage should just be Endometriosis. If this shot works and clears part of the tube it will be a miracle. See even if it doesn't open up 100% he can open it with a Hysterasalpinogram. If he can open it we won't need IVF and we can just keep doing IUI's for a while. Eventually, if the IUI's don't work we will need to try IVF. No matter what we will need help so we can have better chances.
I am praying that I can go to UCONN on Tuesday and that the Lupron opens my tube. Even if it only opens it enough for my doctor to do the rest I will be a happy camper!! I want to be able to start a family with my amazing husband almost more than anything in the world! I am very blessed to have such an understanding, supportive, caring, and loving support team.
Until next time.....
I am supposed to go to UCONN Fertility Clinic on Tuesday but thanks to the Clinic, my OBGYN and Tricare not talking properly I may not be able to go. I am not very happy about that. I have been waiting for over a month to go! Tricare thought I was having a procedure done on Tuesday which is far from being true. All I need to do is have a consult so John and I can see what our options are and how much the IVF will cost us.
When I got my shot my doctor tried to lift my spirits. He kept reminding me that the Lupron should help me even though the odds are low. Since there was no evidence of trauma or infection to the outside of my tube that the blockage should just be Endometriosis. If this shot works and clears part of the tube it will be a miracle. See even if it doesn't open up 100% he can open it with a Hysterasalpinogram. If he can open it we won't need IVF and we can just keep doing IUI's for a while. Eventually, if the IUI's don't work we will need to try IVF. No matter what we will need help so we can have better chances.
I am praying that I can go to UCONN on Tuesday and that the Lupron opens my tube. Even if it only opens it enough for my doctor to do the rest I will be a happy camper!! I want to be able to start a family with my amazing husband almost more than anything in the world! I am very blessed to have such an understanding, supportive, caring, and loving support team.
Until next time.....
Thursday, January 31, 2013
Lupron Delayed :\
So today I was supposed to get my second one month Lupron injection. It has been delayed due to a severe reaction during my allergy testing yesterday :\ I just want to get this over with so we can do the Hysterosalpingogram to see if all this craziness was worth it.
Yesterday, I did the Penicillin Allergy Test since I had a childhood allergy to all Penicillins. Things were going great. I had no reactions to any of the intra-dermal injections. Things took a turn for the worse once I took 500mg of Amoxicillin orally. About 10 minutes after taking the pills I started getting nauseous and tired. Not thinking about it I called John. My face started feeling puffy and I got to a point where I couldn't keep my eyes open. I got off the phone and pressed the alarm that the nurse gave me incase something like this happened. She came in looked at me and I told her I was really sleepy. She ran out of the room and got the doctor. He took one look at me with that look that you know that the doctor knows something bad is happening. They put me up on the exam table and started listing to my breathing. He said my throat was swelling and needed the Epipen. When they did the Epipen the doctor said you are going to feel wide awake in the next 2 minutes. Oh my was he not joking! I felt like a deer in headlights. My eyes felt like they were bulging out and I could breathe better. The first time I had taken any type of Penicillin in 17 years I had an Anaphylaxis Reaction. So needless to say I now have Epipens. I have to take Prednisone today and tomorrow just to make sure I don't have any delayed reactions.
Next Thursday I get the Lupron shot and then 12 days later I go to UCONN. I am so thankful I have friends that are willing to go with me when John can't. My support team is great and I couldn't ask for better people in my life.
Hopefully, the Lupron works and we won't need IVF. Even if we don't need IVF we still need assistance since my reproductive system is screwed up. I still do not ovulate on my own. I retake my Thyroid test right before I go to UCONN. I hope and pray that is better than the last time. The last thing I need is Hashimoto Thyroiditis on top of everything else.
That is really that is all that is happening right now.
Until next time.......
Yesterday, I did the Penicillin Allergy Test since I had a childhood allergy to all Penicillins. Things were going great. I had no reactions to any of the intra-dermal injections. Things took a turn for the worse once I took 500mg of Amoxicillin orally. About 10 minutes after taking the pills I started getting nauseous and tired. Not thinking about it I called John. My face started feeling puffy and I got to a point where I couldn't keep my eyes open. I got off the phone and pressed the alarm that the nurse gave me incase something like this happened. She came in looked at me and I told her I was really sleepy. She ran out of the room and got the doctor. He took one look at me with that look that you know that the doctor knows something bad is happening. They put me up on the exam table and started listing to my breathing. He said my throat was swelling and needed the Epipen. When they did the Epipen the doctor said you are going to feel wide awake in the next 2 minutes. Oh my was he not joking! I felt like a deer in headlights. My eyes felt like they were bulging out and I could breathe better. The first time I had taken any type of Penicillin in 17 years I had an Anaphylaxis Reaction. So needless to say I now have Epipens. I have to take Prednisone today and tomorrow just to make sure I don't have any delayed reactions.
Next Thursday I get the Lupron shot and then 12 days later I go to UCONN. I am so thankful I have friends that are willing to go with me when John can't. My support team is great and I couldn't ask for better people in my life.
Hopefully, the Lupron works and we won't need IVF. Even if we don't need IVF we still need assistance since my reproductive system is screwed up. I still do not ovulate on my own. I retake my Thyroid test right before I go to UCONN. I hope and pray that is better than the last time. The last thing I need is Hashimoto Thyroiditis on top of everything else.
That is really that is all that is happening right now.
Until next time.......
Thursday, January 24, 2013
Week 3 of Lupron
It's been a while since I last blogged. Not a whole lot has changed. I do have some good news though........ I haven't completely lost my mind or gone psycho like my last Lupron treatment last year!
In a week I will be getting my second injection in hopes that it somewhat clears my fallopian tube. I have had some of the side effects like last year but they aren't as bad. I am having more memory loss and confusion which stinks. I have to say that my new doctor was right about the 1 month injections. They are not as horrible as the 3 month ones.
My poor belly button is still healing. It looks better but still gross. Since my immune system is so gone it takes me a while to heal. Hopefully in the next month it will be completely healed but it will never look normal again. If you got to the bottom of the this post you will see my lovely belly button :\
I am still going to UCONN next month! I am excited but very nervous of what will be said. IVF is very expensive and trying to get my husband there will be a task. There is so much paperwork it isn't even funny!! I am thankful one of my lovely friends has offered to go with me. I am throwing a baby shower for this friend this weekend and I have gone crazy and this baby shower is going to be AWESOME!!! One of these days I will have my own baby shower.
Now I must vent for a minute!
I am so sick of people that have never had difficulty getting pregnant, or don't have Endometriosis telling me they know how I feel. If you have never had a fertility problem you don't know how I feel. Yes, I know there are plenty of children that need a home in the world but with my husbands job we wouldn't be able to adopt right now. Adoption is also expensive and it's worth us trying to have our own children at this point. Another thing don't joke about my infertility because it is not funny. I would never wish this on anyone even my worst enemy. This is difficult and no one should tell me that it can't be that bad or hard to deal with! While most of you can make babies the "normal" way our baby or babies will be created by a lab tech in a petri dish.
Until next time....
In a week I will be getting my second injection in hopes that it somewhat clears my fallopian tube. I have had some of the side effects like last year but they aren't as bad. I am having more memory loss and confusion which stinks. I have to say that my new doctor was right about the 1 month injections. They are not as horrible as the 3 month ones.
My poor belly button is still healing. It looks better but still gross. Since my immune system is so gone it takes me a while to heal. Hopefully in the next month it will be completely healed but it will never look normal again. If you got to the bottom of the this post you will see my lovely belly button :\
I am still going to UCONN next month! I am excited but very nervous of what will be said. IVF is very expensive and trying to get my husband there will be a task. There is so much paperwork it isn't even funny!! I am thankful one of my lovely friends has offered to go with me. I am throwing a baby shower for this friend this weekend and I have gone crazy and this baby shower is going to be AWESOME!!! One of these days I will have my own baby shower.
Now I must vent for a minute!
I am so sick of people that have never had difficulty getting pregnant, or don't have Endometriosis telling me they know how I feel. If you have never had a fertility problem you don't know how I feel. Yes, I know there are plenty of children that need a home in the world but with my husbands job we wouldn't be able to adopt right now. Adoption is also expensive and it's worth us trying to have our own children at this point. Another thing don't joke about my infertility because it is not funny. I would never wish this on anyone even my worst enemy. This is difficult and no one should tell me that it can't be that bad or hard to deal with! While most of you can make babies the "normal" way our baby or babies will be created by a lab tech in a petri dish.
Until next time....
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| 48 days Post-Op |
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| 3 days Post-Op |
Thursday, January 10, 2013
Week 1 of Lupron Done and Update
I have been busy the past week with being sick and 3 different doctor appointments for different things.
Today, is the first complete week of my Lupron shot. It has been a rollercoaster ride once again. I will say it isn't as bad as last year's experience so far. John and I are both hoping it stays that way. I have been very tired, and have headaches all day. All I can do is take one day at a time. My moods have been fluctuating but I don't feel like going completely insane thank goodness! We will have to wait and see what the next few weeks have in store for us.
I quit smoking :) I've been nicotine free for 2 weeks now. I am doing pretty well with that. I will say between quitting smoking, then immediately getting sick and getting the Lupron injection have impacted my moods and everything else. Being smoke free and trying to get healthier is just the beginning to a healthier me! Plus, if I want to IVF and have a safe pregnancy I knew I had to quit. Here is to a lifetime of being smoke free!!!!!
Totally unrelated to my Endometriosis but when I got sick after smoking I was told I had bronchitis. Well, after seeing an Allergy & Immunity doctor yesterday I do not have bronchitis. My lungs themselves are inflamed along with the rest of my respiratory track. They seem to think it is due to my asthma and allergies but aren't 100% sure at this time. I get to do a few different allergy test at the end of the month. I also get to take strong nasal sprays and inhalers right before the testing because I failed my breathing test. This isn't the first time that this has happened. I have had problems with allergies, asthma, and bronchitis for years and smoking has only caused it to get worse. I am now paying for all the times I thought the nicotine was relaxing and calming me. WRONG!!
I did go and speak to my PCM about my thyroid results. While my body is producing antibodies that are attacking my thyroid and other body tissues they can't do anything until the #'s go up to a certain level. I think this crazy but there isn't much I can do about it. I go back the week of February 17th to see if the levels are still going up, staying the same or dropping. Based off of those results we will determine if I need to see an Endocrinologist.
Today, I scheduled my first IVF Consult for February 19th at the University of Connecticut's Center for Advanced Reproductive Services!!!! I am so excited but at the same time nervous! My OBGYN is working on the consult letter and documentation to send to the Walter Reed NMMC IVF Program. I want to get as many options and consults as possible. IVF is very expensive and the military doesn't cover it at ALL!!! Once we get all of the consults we will have a lot of decisions to make, plans to try to work out and all that jazz.
I think this year will be a great year for John and I regardless of what may happen. There is no guarantee that IVF will work but we are going to try and that's all we can do. At the end of the day we are our own family and a baby doesn't make a family it only adds to it. It brings more love, commitment, joy, happiness, and awesomeness that was already formed. It would be so nice to be able to add to our family the precious gift of life and it WILL HAPPEN!!
Well ladies and gents that's all I have to say for now. Have a great day!
Until next time.........
Today, is the first complete week of my Lupron shot. It has been a rollercoaster ride once again. I will say it isn't as bad as last year's experience so far. John and I are both hoping it stays that way. I have been very tired, and have headaches all day. All I can do is take one day at a time. My moods have been fluctuating but I don't feel like going completely insane thank goodness! We will have to wait and see what the next few weeks have in store for us.
I quit smoking :) I've been nicotine free for 2 weeks now. I am doing pretty well with that. I will say between quitting smoking, then immediately getting sick and getting the Lupron injection have impacted my moods and everything else. Being smoke free and trying to get healthier is just the beginning to a healthier me! Plus, if I want to IVF and have a safe pregnancy I knew I had to quit. Here is to a lifetime of being smoke free!!!!!
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| This is how I have felt for the past week between the Lupron, quitting smoking, being sick, and people getting on my nerves! |
Totally unrelated to my Endometriosis but when I got sick after smoking I was told I had bronchitis. Well, after seeing an Allergy & Immunity doctor yesterday I do not have bronchitis. My lungs themselves are inflamed along with the rest of my respiratory track. They seem to think it is due to my asthma and allergies but aren't 100% sure at this time. I get to do a few different allergy test at the end of the month. I also get to take strong nasal sprays and inhalers right before the testing because I failed my breathing test. This isn't the first time that this has happened. I have had problems with allergies, asthma, and bronchitis for years and smoking has only caused it to get worse. I am now paying for all the times I thought the nicotine was relaxing and calming me. WRONG!!
I did go and speak to my PCM about my thyroid results. While my body is producing antibodies that are attacking my thyroid and other body tissues they can't do anything until the #'s go up to a certain level. I think this crazy but there isn't much I can do about it. I go back the week of February 17th to see if the levels are still going up, staying the same or dropping. Based off of those results we will determine if I need to see an Endocrinologist.
Today, I scheduled my first IVF Consult for February 19th at the University of Connecticut's Center for Advanced Reproductive Services!!!! I am so excited but at the same time nervous! My OBGYN is working on the consult letter and documentation to send to the Walter Reed NMMC IVF Program. I want to get as many options and consults as possible. IVF is very expensive and the military doesn't cover it at ALL!!! Once we get all of the consults we will have a lot of decisions to make, plans to try to work out and all that jazz.
I think this year will be a great year for John and I regardless of what may happen. There is no guarantee that IVF will work but we are going to try and that's all we can do. At the end of the day we are our own family and a baby doesn't make a family it only adds to it. It brings more love, commitment, joy, happiness, and awesomeness that was already formed. It would be so nice to be able to add to our family the precious gift of life and it WILL HAPPEN!!
Well ladies and gents that's all I have to say for now. Have a great day!
Until next time.........
Thursday, January 3, 2013
New Year, New Adventure, & Doctor's Appointment
2012 is now behind us, and we can start 2013 off with hope, commitment, and courage.
I have hope that this new year will bring answers, change, good health, and a healthy pregnancy! John and I committed to each other almost 3 1/2 years ago and got married June 3, 2012. We have committed to love each no matter what. I am so blessed to have such a wonderful husband that is willing to stand by me knowing I may never be able to give him a family. He loves me even though I can be mean and nasty towards him and others for no apparent reason. While my lack of hormones cause my outburst it is no excuse for my lack of self control. Hopefully this new year will be the beginning of better moods and a lack of outbursts :) It takes a lot of courage to go through all of this craziness. Especially, courage to tell the entire world about it. I hope and pray that someone reads this blog and it inspire, or bring hope to them. It is never easy feeling like you are alone with dealing with a problem.
Everyday seems to be a new journey or brings a new problem but I know that I am going to get through this. All of my health issues can't be fixed over night sadly. Some I will always have and they will affect my quality of life. I feel like a science experiment gone wrong! That is never a good feeling trust me.
Anyways, today I went to the OB. My period is 2 days late but I am obviously not pregnant. What a shocker! I was given my Lupron shot which was only a month dose instead of a 3 month dose and started my Norethindrone.
Norethindrone is a daily 2 mg hormone pill I take to stop my uterine lining from forming! YAY no periods! I go back in a few weeks unless I go crazy like last year. Oh and there is guarantee that the Lupron will help at this point but it is worth a try to save my sad little tube. I will start getting consults over the next few months at different fertility clinics. The numbness in my hand from the IV from surgery could take 18+ months to heal or I may have permanent nerve damage. It is just my right wrist and index finger so I'm not to worried about it right now. It is more annoying than anything. My OB said my PCM needs to start treating my thyroid issue now instead of waiting since it can cause other problems. I go Monday to talk to my PCM. I also go to an Allergy and Immune Doctor on Wednesday. It will be a busy busy week for me.
The next month will be a roller coaster ride. Hopefully, a good ride instead of a month from hell. I hope that this year will be the year and by this time next year John and I can have an addition to our little family!
If you have any input on Fertility Clinics or the different IVF procedures let me know :)
Until next time....
I have hope that this new year will bring answers, change, good health, and a healthy pregnancy! John and I committed to each other almost 3 1/2 years ago and got married June 3, 2012. We have committed to love each no matter what. I am so blessed to have such a wonderful husband that is willing to stand by me knowing I may never be able to give him a family. He loves me even though I can be mean and nasty towards him and others for no apparent reason. While my lack of hormones cause my outburst it is no excuse for my lack of self control. Hopefully this new year will be the beginning of better moods and a lack of outbursts :) It takes a lot of courage to go through all of this craziness. Especially, courage to tell the entire world about it. I hope and pray that someone reads this blog and it inspire, or bring hope to them. It is never easy feeling like you are alone with dealing with a problem.
Everyday seems to be a new journey or brings a new problem but I know that I am going to get through this. All of my health issues can't be fixed over night sadly. Some I will always have and they will affect my quality of life. I feel like a science experiment gone wrong! That is never a good feeling trust me.
Anyways, today I went to the OB. My period is 2 days late but I am obviously not pregnant. What a shocker! I was given my Lupron shot which was only a month dose instead of a 3 month dose and started my Norethindrone.
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| THIS IS WHAT THE SHOT FROM HELL LOOKS LIKE! |
Norethindrone is a daily 2 mg hormone pill I take to stop my uterine lining from forming! YAY no periods! I go back in a few weeks unless I go crazy like last year. Oh and there is guarantee that the Lupron will help at this point but it is worth a try to save my sad little tube. I will start getting consults over the next few months at different fertility clinics. The numbness in my hand from the IV from surgery could take 18+ months to heal or I may have permanent nerve damage. It is just my right wrist and index finger so I'm not to worried about it right now. It is more annoying than anything. My OB said my PCM needs to start treating my thyroid issue now instead of waiting since it can cause other problems. I go Monday to talk to my PCM. I also go to an Allergy and Immune Doctor on Wednesday. It will be a busy busy week for me.
The next month will be a roller coaster ride. Hopefully, a good ride instead of a month from hell. I hope that this year will be the year and by this time next year John and I can have an addition to our little family!
If you have any input on Fertility Clinics or the different IVF procedures let me know :)
Until next time....
Friday, December 14, 2012
Post-Op Appointment and Plans
Today, was my one week Post-Op appointment. It went pretty well if I do say so myself. My mom went with me and sadly my husband wasn't able to go. I got my 2 external stitches removed and my incisions are healing perfectly. They are scabbing up and itchy which is a good thing :)
Anyways, the doctor talked about what he saw while poking around in my abdominal and pelvic cavity most of which was in my "Surgery & Day 1 Post-Op" blog. The cyst wasn't the only thing that the doctor saw that he was surprised to find.
I have Allen-Master's Syndrome. Here is one way to explain what it is:
Allen-Master's Syndrome is where Endometriosis creates pockets or holes in the Peritoneum. Peritoneum covers the inside of the body much like the skin covers the outside of the body. Peritoneum normally has the appearance of saran wrap. It is stretched over the organs resulting in a flat contour. Peritoneal pockets can be of varying depths, ranging from slight indentations to very deep narrow pockets. In its mild form peritoneal pockets can result in minor changes in the contour of the pelvic peritoneum. On occasion this is the only appearance of Endometriosis. So needless to say my uterus jolts around which it isn't suppose to when it wants too. This is another reason why I have pain. Below is a few pictures taken during surgery that shows my Allen-Master's Syndrome.
You can surgically go into the holes and start removing tissue and try to find where the Endometriosis is but you risk cutting your colon open. We are just going to leave this issue alone.
We now have some decisions to make on where we go from here. Here are the options:
1. Do 1 month injections of Lupron for 3 months. Then do a Hysterasalpinogram and see if my tube is opening from the shot. If it is opening we would do 3 more 1 month injecctions. Then another Hysterasalpinogram. If the tube is cleared we would try to do a cycle of IVF. While taking the Lupron I can still do consults with Fertility Clinics and price what an IVF cycle would cost us.
2. Just jump right in head first and start planning on doing IVF with no treatment to try to fix the tube.
3. Just suppress me once again and risk the Endometriosis spreading.
We have deiced option 3 is not an option. As much as I dread the thought of Lupron again it is one of the only ways to try to save my tube. My doctor doesn't believe in the 3 month injection at one time like I had before. He says he ha better success rates with the 1 month injections. Also with 1 month injections if I start going crazy I don't have to have anymore injections. I would go on Add-Back therapy medicine as well and he WILL monitor me closely unlike the last doctor.
As of right now since IVF is so expensive we are going with option 1 and doing the Lupron to start with. I actually trust this doctor and think he will actually do all the test he is supposed too while on it. I am scared of the shot but I have to try to save my tube. While receiving the shots I will see doctors at multiple Fertility Clinics around Connecticut and possibly at Bethesda and Norfolk. My doctor says I am a perfect candidate for IVF at this time. Given my age, my uterus is okay, my ovary looks good and the tissue that is on m ovary that I need looks beautiful(his words not mine) I should do it.
I never thought I would have to deal with all of this at such a young age or at any age. This is so stressful, annoying, and heartbreaking all at the same time. It's like can we get a break please??
Over the past 2 years my father-in-law has been battling cancer and it is a miracle and a blessing he is still here with us. Over these 2 years he has showed me not to give up, stay strong and keep fighting. I probably would of given up by now if he wasn't such a positive and inspirational influence in our lives. I will admit that some days I honestly just want to give up and breakdown. It hurts so bad physically, mentally, emotionally, and spiritually. At the end of the day I think about my father-in-law and know that if he can push on while fighting cancer I can push on with my battle against Endometriosis and Infertility. I know God has a plan for us and I hope it includes having our own family no matter how it happens.
I absolutely love Jo Dee Messina's song "Bring On the Rain" I believe it fits my situation quite well.
These are my favorite lyrics from the song:
Also, please say a prayer for those families that lost loved ones in the shooting that took place at Sandy Hook Elementary School today. The families need our prayers and positive thoughts more than ever!
Until next time...
Anyways, the doctor talked about what he saw while poking around in my abdominal and pelvic cavity most of which was in my "Surgery & Day 1 Post-Op" blog. The cyst wasn't the only thing that the doctor saw that he was surprised to find.
I have Allen-Master's Syndrome. Here is one way to explain what it is:
Allen-Master's Syndrome is where Endometriosis creates pockets or holes in the Peritoneum. Peritoneum covers the inside of the body much like the skin covers the outside of the body. Peritoneum normally has the appearance of saran wrap. It is stretched over the organs resulting in a flat contour. Peritoneal pockets can be of varying depths, ranging from slight indentations to very deep narrow pockets. In its mild form peritoneal pockets can result in minor changes in the contour of the pelvic peritoneum. On occasion this is the only appearance of Endometriosis. So needless to say my uterus jolts around which it isn't suppose to when it wants too. This is another reason why I have pain. Below is a few pictures taken during surgery that shows my Allen-Master's Syndrome.
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| This is one of two holes in my Peritoneum. |
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| The other pockets in my Peritoneum. This is the same hole in both of these pictures. |
We now have some decisions to make on where we go from here. Here are the options:
1. Do 1 month injections of Lupron for 3 months. Then do a Hysterasalpinogram and see if my tube is opening from the shot. If it is opening we would do 3 more 1 month injecctions. Then another Hysterasalpinogram. If the tube is cleared we would try to do a cycle of IVF. While taking the Lupron I can still do consults with Fertility Clinics and price what an IVF cycle would cost us.
2. Just jump right in head first and start planning on doing IVF with no treatment to try to fix the tube.
3. Just suppress me once again and risk the Endometriosis spreading.
We have deiced option 3 is not an option. As much as I dread the thought of Lupron again it is one of the only ways to try to save my tube. My doctor doesn't believe in the 3 month injection at one time like I had before. He says he ha better success rates with the 1 month injections. Also with 1 month injections if I start going crazy I don't have to have anymore injections. I would go on Add-Back therapy medicine as well and he WILL monitor me closely unlike the last doctor.
As of right now since IVF is so expensive we are going with option 1 and doing the Lupron to start with. I actually trust this doctor and think he will actually do all the test he is supposed too while on it. I am scared of the shot but I have to try to save my tube. While receiving the shots I will see doctors at multiple Fertility Clinics around Connecticut and possibly at Bethesda and Norfolk. My doctor says I am a perfect candidate for IVF at this time. Given my age, my uterus is okay, my ovary looks good and the tissue that is on m ovary that I need looks beautiful(his words not mine) I should do it.
I never thought I would have to deal with all of this at such a young age or at any age. This is so stressful, annoying, and heartbreaking all at the same time. It's like can we get a break please??
Over the past 2 years my father-in-law has been battling cancer and it is a miracle and a blessing he is still here with us. Over these 2 years he has showed me not to give up, stay strong and keep fighting. I probably would of given up by now if he wasn't such a positive and inspirational influence in our lives. I will admit that some days I honestly just want to give up and breakdown. It hurts so bad physically, mentally, emotionally, and spiritually. At the end of the day I think about my father-in-law and know that if he can push on while fighting cancer I can push on with my battle against Endometriosis and Infertility. I know God has a plan for us and I hope it includes having our own family no matter how it happens.
I absolutely love Jo Dee Messina's song "Bring On the Rain" I believe it fits my situation quite well.
These are my favorite lyrics from the song:
It's almost like the hard times circle 'round, A couple drops and they all start comin' down.
Yeah, I might feel defeated, I might hang my head, I might be barely breathing, but I'm not dead.
Yeah, I might feel defeated, I might hang my head, I might be barely breathing, but I'm not dead.
No, cause tomorrow's another day, and I'm thirsty anyway,
So bring on the rain!!!!!Also, please say a prayer for those families that lost loved ones in the shooting that took place at Sandy Hook Elementary School today. The families need our prayers and positive thoughts more than ever!
Until next time...
Monday, December 10, 2012
Day 3 Post-Op
The past 3 days have been pretty good. I have had my moments of pain, and discomfort. I have only taken 3.5 Percocet's since Friday, which is great. This recovery has been so much easier than the last two surgeries.
I took my bandages off yesterday. My incisions look great even though they are a tad bit red. Today, they have been itchy which is a good sign :) I think my doctor did a excellent job with my incisions. They are clean and neat. My last surgeries incisions were not clean and all over the place. My poor belly button :(
Overall everything is going quite well. I can't wait to go to my Post-Op and discuss what options we have and what can be done to save my poor little tube. Even after my incisions heal it will still take my body months to fully recover from this surgery. I finally had relief of all the gas in my shoulders. It is great to be able to lay down and not have stabbing pains in my chest and shoulders anymore. The stomach swelling has definitely gone down over the past few days. Obviously, I am still a little puffy. I look forward to being able to go to the bathroom or cough without having to hold a pillow or towel to my stomach to help with pain and so I don't pop a stitch :P
I got a call today for my Primary Doctor who told me that my thyroid was finally in an appropriate normal range. However, since it has been all over the charts mainly too low that it seems like I'm developing Hypothyroidism. I already knew this but to hear it and now have to be monitored to see if I need medication for that. I also will be going to an Immune, Allergy, and Infectious Disease doctor in the next few weeks because of my Steven-Johnson's Syndrome. Thankfully, I have not had a problem with any of the medication I have been given for this surgery and recovery.
I am so thankful for my amazing friends that have been bringing us dinner every night since my surgery. It is such a relief to not have to worry about cooking. You ladies are amazing and we are forever thankful for your kindness and generosity.
Until next time....
I took my bandages off yesterday. My incisions look great even though they are a tad bit red. Today, they have been itchy which is a good sign :) I think my doctor did a excellent job with my incisions. They are clean and neat. My last surgeries incisions were not clean and all over the place. My poor belly button :(
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| Belly button incision. The scar you can see on the lower bottom of m belly button is from last years surgery. The lighting isn't the greatest and it is not as red as it looks. |
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| Lower abdomen incision. It looks red but most of that is due to the lighting. |
I got a call today for my Primary Doctor who told me that my thyroid was finally in an appropriate normal range. However, since it has been all over the charts mainly too low that it seems like I'm developing Hypothyroidism. I already knew this but to hear it and now have to be monitored to see if I need medication for that. I also will be going to an Immune, Allergy, and Infectious Disease doctor in the next few weeks because of my Steven-Johnson's Syndrome. Thankfully, I have not had a problem with any of the medication I have been given for this surgery and recovery.
I am so thankful for my amazing friends that have been bringing us dinner every night since my surgery. It is such a relief to not have to worry about cooking. You ladies are amazing and we are forever thankful for your kindness and generosity.
Until next time....
Saturday, December 8, 2012
Surgery & Day 1 Post-Op
Yesterday, was my surgery day. It went okay. It could of been better or worse. I arrived at the hospital at 0540 by that point my bleeding had slowed down to a light flow. I went back to be prepped around 0630 at that time I spoke to about 15 different people. I had a BHCG test done and it was obviously negative so we could move forward and do surgery. A nurse started an IV in my left arm, and they gave my fluids and started me on strong antibiotics to prevent infection. I finally got prepped and they doctors came and got me. I kissed John and my mom good bye. Once in the OR I moved to the table and one of 3 Anesthesiologist noticed my IV was blown. So, they tried to start another IV in my right hand. Since my veins and hands are so small the catheter wouldn't go all the way in, so that was a no go. Finally, they started an IV in my wrist even though the hit the nerves and my hand and arm felt like it was being cut off. I finally got a good cocktail and I was out. Surgery officially started at 0720.
Once I was under the cutting and poking and prodding began. They made 2 incisions. One through my old belly button incision and one through my incision from a surgery in 2009. Once in the began the Hysterasalpinogram. Here are some graphic pictures of what was seen while inside of my uterus. The red splotches are Endometriosis implants.
So as you can see my tube was 100% blocked and is obstructed. It was not able to be surgically cleaned out because of the risk of damage it would further cause. The tube is very diseased and this would explain why we haven't been able to get pregnant. Also, they tried to inject the dye into the tube once the made a hole. The tube was so blocked the dye wouldn't enter the tube. One option to clear the tube is month to month injections of Lupron. Taking Lupron again is not a decision I will make over night. It will take some thinking and medical evidence that it will actually help my one and only tube. I do not want to do Luprn again but at this point if I don't try something the disease can cause my tube to have to be removed. It could also spread to the ovary. We will have to wait and see what my doctor says on Friday.
As far as the Laparoscopy goes they found a few new implants which were burnt off. To my doctors surprise I had a unexpected cyst on my tube. The cyst was removed and sent to pathology.
The doctor recommended not to have surgery to fix the tube since it would damage it more than it is and that we would benefit best from IVF. My Post-Op appointment is on Friday and we will discuss options, etc.
POST-OP DAY 1
Today, I am much more sore than I was yesterday. My stomach is distended and we are having to keep an eye on that. I think it is okay. Probably just swollen from the obvious like being cut open, having gas inflate my abdomen and also not being able to go to the bathroom. If it is not better by tomorrow night and or gets hard then I have to call the doctor ASAP. I have been taking my Zofran for nausea every 8 hours and half a Percocet every 6-8 hours as well. I am feeling pretty good needless to say :P
My belly button incision is sore. I can't really feel the other incision, thank goodness. My shoulders are feeling better after taking a gas relief medication. It is amazing how bad the gas they inflate your abdomen with to move your intestines out of the way hurts and how it moves through your body cavities.
I have been taking it easy today. My mom and I went for a short walk this afternoon after it stopped drizzling. I am taking it easy but I can't just lay/sit up in the bed all day. I have to be active.
I will say I am not happy about the outcome of surgery in a way. Good news is my ovary is fine. Bad news my tube is very diseased. I hope and pray that it can be fixed with medication and that John and I will one day be blessed with a healthy baby or babies. No matter how we have children if it's through the natural way, IUI, IVF or adoption we will have a family and that child or children will be loved so much and a miracle.
Going through this at the age of 23 isn't easy. I am not saying it isn't hard for others at all. For anyone that has ever gone through this knows what it feels like. I know I am not alone in the battle against Endometriois, and Infertility. I have been through a lot in the past few years health wise. I have had my ups and my downs. I have wanted to give up on this battle but I haven't. I am so blessed that I have a husband that supports me through all of this chaos! My family and friends are amazing and supportive as well. I couldn't ask for better people in my life to support me.
Until next time.....
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| This is where my Fallopian Tube opening should be. As you can see there is scar tissue and Endometriosis over the tube opening. They removed the tissue and made a hole to reveal the next image. |
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| This is the hole they had to make to look inside my tube and try to inject the dye into. |
So as you can see my tube was 100% blocked and is obstructed. It was not able to be surgically cleaned out because of the risk of damage it would further cause. The tube is very diseased and this would explain why we haven't been able to get pregnant. Also, they tried to inject the dye into the tube once the made a hole. The tube was so blocked the dye wouldn't enter the tube. One option to clear the tube is month to month injections of Lupron. Taking Lupron again is not a decision I will make over night. It will take some thinking and medical evidence that it will actually help my one and only tube. I do not want to do Luprn again but at this point if I don't try something the disease can cause my tube to have to be removed. It could also spread to the ovary. We will have to wait and see what my doctor says on Friday.
As far as the Laparoscopy goes they found a few new implants which were burnt off. To my doctors surprise I had a unexpected cyst on my tube. The cyst was removed and sent to pathology.
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| These are some of the places that my implants were burnt off of. |
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| Left picture shows the cyst and the right picture is after the cyst was cut up and removed. |
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| This is where my left ovary and tube was before being removed last December. |
The doctor recommended not to have surgery to fix the tube since it would damage it more than it is and that we would benefit best from IVF. My Post-Op appointment is on Friday and we will discuss options, etc.
POST-OP DAY 1
Today, I am much more sore than I was yesterday. My stomach is distended and we are having to keep an eye on that. I think it is okay. Probably just swollen from the obvious like being cut open, having gas inflate my abdomen and also not being able to go to the bathroom. If it is not better by tomorrow night and or gets hard then I have to call the doctor ASAP. I have been taking my Zofran for nausea every 8 hours and half a Percocet every 6-8 hours as well. I am feeling pretty good needless to say :P
My belly button incision is sore. I can't really feel the other incision, thank goodness. My shoulders are feeling better after taking a gas relief medication. It is amazing how bad the gas they inflate your abdomen with to move your intestines out of the way hurts and how it moves through your body cavities.
I have been taking it easy today. My mom and I went for a short walk this afternoon after it stopped drizzling. I am taking it easy but I can't just lay/sit up in the bed all day. I have to be active.
I will say I am not happy about the outcome of surgery in a way. Good news is my ovary is fine. Bad news my tube is very diseased. I hope and pray that it can be fixed with medication and that John and I will one day be blessed with a healthy baby or babies. No matter how we have children if it's through the natural way, IUI, IVF or adoption we will have a family and that child or children will be loved so much and a miracle.
Going through this at the age of 23 isn't easy. I am not saying it isn't hard for others at all. For anyone that has ever gone through this knows what it feels like. I know I am not alone in the battle against Endometriois, and Infertility. I have been through a lot in the past few years health wise. I have had my ups and my downs. I have wanted to give up on this battle but I haven't. I am so blessed that I have a husband that supports me through all of this chaos! My family and friends are amazing and supportive as well. I couldn't ask for better people in my life to support me.
Until next time.....
Wednesday, December 5, 2012
A month from HELL!
The last month has been absolutely ridiculous for my health and it is still going downhill! If one more thing happens in the next few days I am going to literally loose it!!
First, it all started with a simple sinus infection on November 8th. I got better about 2 days after waking up feeling like crap thanks to the medication my doctor gave me.
Second, thanks to the Singular I was given I woke up a few days after starting it with a rash in random places. That was on November 15th. Naturally I took Benadryl and called the doctor. What looks like a normal rash for most people can be a fatal rash for me. I have an autoimmune disorder called Steven-Johnson's Syndrome. It causes reactions to mostly penicillin's and sulfa drugs but I am an unique case. My immune system is so suppressed and my skin so sensitive anything can set it off. The rash can take hours to days to fully appear. It dries out my organs, and mucus membranes in my entire body. When my skin starts to blister or I develop blisters in my mouth it is when I become more likely to die. My skin then begins to slough off and I would need to be put into the burn unit or ICU. Anyways, back to this reaction, I took the Benadryl for 24 hours and then the next day it had spread so I immediately went to the ER on November 16th. I was given 3 IV meds to try to clear the rash up. If this didn't work then we would know if I was in a full blown reaction. Thankfully, the reaction was caught in time and the medication slowly but surely made the rash go away. See I have been down the road of having a severe reaction and nearly died when my lungs dried out and blood pressure dropped to 45/23. When I break out now I take action because I don't know if I am going to die or not. So if you ever see me panic over what looks like a small rash this is why. I will be going to an Allergy and Immune Specialist, and Infectious Disease sometime in the near future to pretty much figure out what is going on and to be a lab rat!
Third, on November 30th I woke up feeling fine. I had breakfast which was 2 pieces of toast and a cup of greek yogurt. After I ate I felt queasy but nothing I couldn't handle. I then went to my Pre-Op for my Laparoscopy and Hysterasalpinogram. Everything was dandy until I got in the car to leave. I felt like I was going to vomit everywhere. Luckily, I didn't get sick until I got home. For the next 4 hours I vomited 9 times. I was so exhausted, weak, and dehydrated I knew I needed help. I couldn't hold anything and I mean anything down! My fever wasn't to terrible at this point. With the advice of a close friend I decided I needed to go the the health center in town to get fluids. My good friend took me to the center. By this point I had no real fever, and they gave me a tablet of Zofran. They decided I needed an IV which wasn't rocket science. I looked like death literally. I was so dehydrated my veins were collapsed and they had to use a newbown IV cath on me. Even that took 10 minutes to put in. After hours of getting fluids I started feeling better. Finally, for the first time in 10 hours I was able to pee. It was great lol. I finally was discharged and went to my merry way with being diagnosed with a stomach virus. I still don't the greatest now but I sure as hell feel better than I did on Friday.
Fourth, yesterday started like a normal day with a follow up appointment for the stomach virus. Well, we weren't trying last month because of the fact I am having the surgery and the uterine x-ray. I started spotting yesterday morning before my appointment and was like this is odd, my period is a week away. So naturally I got all excited because it could have been implantation bleeding. I went to the doctor and we talked about the stomach bug and the spotting. So we did a BHCG, and a thyroid test for Hashimotos Thyroiditis. I was thinking of how wonderful it would be to be pregnant and I could cancel surgery and all of that jazz! Results came in a few hours later..... I am NOT pregnant, my period started a week early which is unusual and we don't know why it happened. Thankfully I don't have Hashimotos Thyroiditis!!! I called my OBGYN to tell him my period started!
Fifth, I may have to cancel surgery because of my period starting a week early. I can't be bleeding with a medium or heavy flow and have the Hysterosalpinogram done. Since I am allergic to the IVP dye they use when not performing surgery the doctor wants to so them at the same time so he can use none iodine dye. I am PISSED!!!! My mother is on here way up here right now to take me to surgery and take care of me after and we won't know until tomorrow night rather or not I am having surgery Friday morning. How the hell am I supposed to know what my uterus is going to do Thursday night or Friday morning. I have no control over it obviously. I am so frustrated I could shoot Bambi!
Anyways, I may or may not have the surgery Friday. Please pray that my lovely period plays nice and allows me to have it on Friday. I am in a lot of pain and don't think I can wait much longer to have stuff removed and burnt off.
Until next time my friends...........
First, it all started with a simple sinus infection on November 8th. I got better about 2 days after waking up feeling like crap thanks to the medication my doctor gave me.
Second, thanks to the Singular I was given I woke up a few days after starting it with a rash in random places. That was on November 15th. Naturally I took Benadryl and called the doctor. What looks like a normal rash for most people can be a fatal rash for me. I have an autoimmune disorder called Steven-Johnson's Syndrome. It causes reactions to mostly penicillin's and sulfa drugs but I am an unique case. My immune system is so suppressed and my skin so sensitive anything can set it off. The rash can take hours to days to fully appear. It dries out my organs, and mucus membranes in my entire body. When my skin starts to blister or I develop blisters in my mouth it is when I become more likely to die. My skin then begins to slough off and I would need to be put into the burn unit or ICU. Anyways, back to this reaction, I took the Benadryl for 24 hours and then the next day it had spread so I immediately went to the ER on November 16th. I was given 3 IV meds to try to clear the rash up. If this didn't work then we would know if I was in a full blown reaction. Thankfully, the reaction was caught in time and the medication slowly but surely made the rash go away. See I have been down the road of having a severe reaction and nearly died when my lungs dried out and blood pressure dropped to 45/23. When I break out now I take action because I don't know if I am going to die or not. So if you ever see me panic over what looks like a small rash this is why. I will be going to an Allergy and Immune Specialist, and Infectious Disease sometime in the near future to pretty much figure out what is going on and to be a lab rat!
Third, on November 30th I woke up feeling fine. I had breakfast which was 2 pieces of toast and a cup of greek yogurt. After I ate I felt queasy but nothing I couldn't handle. I then went to my Pre-Op for my Laparoscopy and Hysterasalpinogram. Everything was dandy until I got in the car to leave. I felt like I was going to vomit everywhere. Luckily, I didn't get sick until I got home. For the next 4 hours I vomited 9 times. I was so exhausted, weak, and dehydrated I knew I needed help. I couldn't hold anything and I mean anything down! My fever wasn't to terrible at this point. With the advice of a close friend I decided I needed to go the the health center in town to get fluids. My good friend took me to the center. By this point I had no real fever, and they gave me a tablet of Zofran. They decided I needed an IV which wasn't rocket science. I looked like death literally. I was so dehydrated my veins were collapsed and they had to use a newbown IV cath on me. Even that took 10 minutes to put in. After hours of getting fluids I started feeling better. Finally, for the first time in 10 hours I was able to pee. It was great lol. I finally was discharged and went to my merry way with being diagnosed with a stomach virus. I still don't the greatest now but I sure as hell feel better than I did on Friday.
Fourth, yesterday started like a normal day with a follow up appointment for the stomach virus. Well, we weren't trying last month because of the fact I am having the surgery and the uterine x-ray. I started spotting yesterday morning before my appointment and was like this is odd, my period is a week away. So naturally I got all excited because it could have been implantation bleeding. I went to the doctor and we talked about the stomach bug and the spotting. So we did a BHCG, and a thyroid test for Hashimotos Thyroiditis. I was thinking of how wonderful it would be to be pregnant and I could cancel surgery and all of that jazz! Results came in a few hours later..... I am NOT pregnant, my period started a week early which is unusual and we don't know why it happened. Thankfully I don't have Hashimotos Thyroiditis!!! I called my OBGYN to tell him my period started!
Fifth, I may have to cancel surgery because of my period starting a week early. I can't be bleeding with a medium or heavy flow and have the Hysterosalpinogram done. Since I am allergic to the IVP dye they use when not performing surgery the doctor wants to so them at the same time so he can use none iodine dye. I am PISSED!!!! My mother is on here way up here right now to take me to surgery and take care of me after and we won't know until tomorrow night rather or not I am having surgery Friday morning. How the hell am I supposed to know what my uterus is going to do Thursday night or Friday morning. I have no control over it obviously. I am so frustrated I could shoot Bambi!
Anyways, I may or may not have the surgery Friday. Please pray that my lovely period plays nice and allows me to have it on Friday. I am in a lot of pain and don't think I can wait much longer to have stuff removed and burnt off.
Until next time my friends...........
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