Friday was CD1. I was on the fence about whether or not to chart, go into the clinic etc. My dh and I had a long talk about it. Somehow I talked myself back into giving it another try. We agreed to give it everything. I even had an unused box of repronex that I have been too chicken to try. The fear was not multiples, the fear was lufs. We agreed at this point to just go for it.
Being that today was Monday and it was now CD4, I had to go in for baselines. I had not been to the clinic in two months. I decided to pop in at 7:45 am. They told me they could squeeze me in for a quick US. Well, an hour later, I started to freak out. I told them I had to go to work and that I had to come back later. She said that 10:45 was all clear and I would be all set then.
I get back there at 10:45 and wait, wait, wait. OMG everyone who came in after me went in. Someone even came in at 11:15 with an 11:15 apt and went in before me. They finally take me in around 11:20. I should have been back to school by 11:27. The school clock is a little off so I had another 5 min or so. I knew I would be late.
I finally get the US and OMG there is a HUGE MONSTER CYST. It was over 5cm. It took up the whole screen. I think it was bigger than my uterus. So I waited all day, was going to be late and now I had that sucker staring at me. Now, I am on the bench. I drive back to school like a maniac and of course I am late.
ERGHHH so now I have mixed emotions. I am annoyed that I bothered to go into the clinic today, but glad I found out about the cyst. I really wanted a break, so I was glad to be on the bench, but I was mad that it was not my choice. I went back and forth. 5cm is huge. The nurse was shocked that I was not feeling it.
Then I was mad at myself for being lazy and not going to the clinic the last two months. I did not take my trigger this past moth, bc I was lazy and missed my OPK. It was early so I thought maybe I was normal. Well I guess I am not normal and I still have LUFS. I have to be gratelful that for the past year or so I have been able to treat my lufs with the trigger and the neupogen. I am also wondering how much my lack of neupogen and additon of LDN aggravated my LUFS.
I have had LUFS in the past of 2-3 cm. BUT 5cm is so large that something must have kept feeding it. When I used that language my DH laughed. I guess it goes with my monster theme. It was so black and hollow that I am worried it is still active. I had been taking more B6 this month. In the past, I was taking large amounts of it and it made my LUFS really bad. That was 500. This time I was only taking 25, so who knows.
Does anyone know if it would be bad or good to take a trigger shot now? This month is a bust anyway, so I was just hoping to make it go away faster...................
UGHHHHHHHHHHHHHH
Showing posts with label LUFS. Show all posts
Showing posts with label LUFS. Show all posts
Monday, October 22, 2012
Saturday, January 14, 2012
What a Great Day!
Yesterday I had a great day!
I woke up and had a pos OPK. I love seeing those two blue lines bc they might just be the only ones I ever see. It is also a reassurance that part of my system is working. This happened on CD15 which is great. That is back to my usual. Last month it was much later due to stress. I took my trigger.
Later on that day my dr's office called and made an apt for next week. I was happy to hear back and have something written down. It was Friday, dress down day, and a pay day, so that just made it even better.
My work situation continues to improve. My boss gave me a compliment on something I did. I had to work on something with the teachers that I had an issue with in Sept. I did a great job collaborating and then I came up with a great idea and everyone loved it. I was so happy to hear that. I enjoy working there and I want to be able to move forward.
After school I was just cleaning my room when my cell phone rings and it was my napro Dr. =) I told him that I just made an apt to talk with him next week. =) He is so great. I love the compassion and positive energy in his voice. We spoke about doing the lap surgery. He said that there is a possibility that if he takes away too much tissue I could go into early menopause. Yikes. At this point I am not willing to risk that. Then we talked about how all my napro stats are great. I mentioned the polyps and how I was worried that they may have come back in the past 3 years. He agreed to do the hysteroscopy and also check my tubes. I am so thrilled. I told him that I need to know that my uterus is in top shape before I get into any more medications. The dr that did the last one 3 years ago was not napro so I am excited to have my napro surgeon get a good look and give me his expert opinion.
We also spoke about using nsaids to calm down inflammation. I have heard many people talk about using them. I have always avoided them due to my lufs, since nsaids can make it worse. My Dr said that there is some research that a specific nsaid can help with implantation. He suggested that I only use it post peak after the threat of lufs is over. I also have thick blood, so this will thin it also. I did a google search and found an article on piroxicam and implantation rates The
implantation rate was 12.3 vs. 7.7% (p-value = 0.04) and the clinical
pregnancy rate was 25.5 vs. 10% (p-value = 0.015) in the piroxicam vs.
control groups, respectively.
Even though the article is talking about IVF, we can use this information for non ivf too. It mentioned prostaglandins which is something people like me with endo have issues with. It said that they can increase uterine contractions and decrease
receptivity of embryo and nsaids block prostaglandins. I am going to try this after my procedure.
Friday, December 30, 2011
Christy's Success Story
I met Christy on the Yahoo catholic IF forum. We had a connection since we both had Lufs. She recently got her BFP so I asked her to write her story to encourage others to try napro. Thank you Christy for sharing.
______________________________________________________________________________I got my first period in 8th grade and from that time on, I had 1 or 2 periods a year. When I did get a period, I would bleed for 3 weeks, it was awful! I was terrified in high school because I never knew when to expect my period and when it started it was almost immediately a very heavy flow. Even scarier was that no doctor could give me an explanation for what was happening and why my body wasn't functioning as it should. I started seeing the gyn when I was 16, I cried because I was very modest and couldn't bear being examined by a male doctor, but my mom was really concerned about me and didn't know what else to do. This doctor had delivered all of my siblings and he was apparently a "good Catholic doctor." When I was 18 he shamed and scared me into starting the BCP. He told me I would get cancer otherwise and he told me while my mom was out of the room, "Is your mom gonna give me grief about the BCP because you are Catholic?"
I was on the pill for 2 years and it caused me to gain weight and become depressed and have panic attacks. So I took myself off of it. After graduating from college with a degree in biology/chemistry/philosophy minor, I wanted to pursue bioethics. I still wasn't having regular cycles and getting responses like "you might have a brain tumor or why do you want to have regular periods, are you trying to get pregnant?" from the docs I saw. Eventually I became so jaded I just stop seeing doctors altogether. Until I met Dr Hilgers. A good friend of mine was working for him as a research assistant and told me he was hosting a bioethics conference at the Pope Paul VI Institute. So I went and I love every minute of it. Dr Hilgers kept saying how much research needed to be done and I told him I would love to conduct research for him. After he got a grant he asked me to work for him, so I moved from Cleveland to Omaha and got started. I loved my work, it was fascinating! At the same time, I got trained as a FertilityCare Practitioner and also worked for Dr Hilgers teaching his patients how to chart the Creighton Model. I also started seeing a Practitioner and began charting and made an appointment with Dr Hilgers. He took one look at my chart and said he was 95% sure I had polycystic ovaries. He did some blood test and an ultrasound to confirm. Finally at 25 years old I had a diagnosis!! He started me on progesterone therapy and I have had regular cycles ever since. He also told me that I might have difficulty conceiving when I got married, so I was somewhat prepared for the infertility journey I would face.
My husband and I discussed adoption as an option before we got married to make sure we were on the same page. Having accurate information actually made me feel more empowered and it also made me feel that infertility would be something my husband and I dealt with together, I wasn't going to be alone in it.
A year after we were married, we flew back to Omaha (I had moved back home) and I had an ovarian wedge resection. I recovered very easily from the surgery but Dr Hilgers said that he was concerned about adhesions since my ovaries were pretty "fried" from the many years of untreated severe PCOD. I also had minor endometriosis. He also discovered I was hypothyroid and started me on T3. 2 cycles after that we conceived, but it was a chemical pregnancy. A few cycles after that I started clomid and letrezol and we conceived again, only to lose the baby at 8weeks. I was devastated! 18 months later, we had a repeat Lap and Dr Hilgers lasered some adhesions and minor endometriosis and made sure both tubes were unblocked. We stared back on clomid and letrezol and Dr Hilgers monitored my hormones to see if any medication changes increased them enough for us to start trying to achieve again, with less risk for miscarriage. But nothing raised my hormone levels, they were rock bottom for years. During this time I was on many medications and also getting periovulatory blood draws and post peak blood draws (about 6-8 blood tests a month) and having to ship the blood samples to Dr Hilgers overnight with dry ice. (He was monitoring the quality of ovulation with the blood tests). One time I went to Dicks sporting good store to purchase a small Styrofoam cooler to use to ship the blood sample and the clerk accused me of being a drug dealer! He was a former policeman and apparently people who buy these coolers to ship things with dry ice use them to cure marijuana. I didn't tell him I'm not a drug dealer, I need this to ship my blood because I thought he would freak out even more! After a few years of low hormones on ovulation induction meds, I asked Dr Hilgers if he would do an ultrasound series and he did and discovered I had LUFs. So I tried about 6 months of ultrasounds and HCG trigger dose and no pregnancy. He also treated a uterine infection with 6 months of antibiotics.
In the meantime we discussed adoption with Dr Hilgers and he said he was in full support. We started the process in 2007 (5 years TTC) and adopted our oldest daughter Gianna as a new born in May of 2008. What a miracle (TTC!
Then I had a third and forth surgery. Dr Hilgers didn't have his current adhesion prevention protocol in place when I had my wedge resection, so he was still concerned about adhesions. So I had a third Lap and he lasered extensive adhesions and covered my ovaries in gortex to allow the surface to heal without causing scaring or adhesions, then a week or so later he did another Lap to remove the gortex. The ovaries looked good! About 6 months after that, he discussed cortisol treatment for adrenal fatigue. I was one of his first patients to start this protocol. I suffered from constant severe fatigue and was diagonosed by Dr Hilgers with severe adrenal fatigue. I felt like a new woman on cortisol! I find it truly amazing how tirelessly Dr Hilgers searches for a cure for infertility. At this point, I had been a patient of his for nearly 10 years (ttc 7years) and he never gave up on me, he was always looking to improve my health and make me feel better, besides helping us to conceive. After 9 months on the cortisol and starting synthroid, we found out we were expecting our second daughter Catherine, who was born a happy and healthy progesterone fed baby in May of 2010. After 7 years of infertility! God is so good!
When Catherine was 6 months old we thought about actively trying to achieve again. I knew I had LUFs and Dr Hilgers was looking at a new protocol for that from a doc in Japan. He asked me if I wanted to try it and I said sure! So in June of 2011 we started our 1st cycle of Neupogin and HCG trigger and I ovulated!! But no pregnancy. We continued for a few months and no ovulation, just ovarian cysts. I took a month off and we stared up again. I told myself, I will try this until December and then I am just going to focus on enjoying my 2 girls, my 2 gifts from God. And on the Feast of the Immaculate Conception we found out we are expecting! Wow! I still can't believe it! So far my progesterone levels are good, so that is a good sign of a healthy pregnancy. I can't wait to see my local ob/gyn and say we are expecting again, she thinks Dr Hilgers is a bit of a quack and I love proving her wrong!
Hope my story is helpful. Thanks for posting it.
Christy
Monday, November 7, 2011
CD13 Follie Check Nov 2011
Last week I went in to get my Vit D retested. I had it tested in August and it came back low around 24. It should be around 60. So I started supplements. It takes a few months to get the levels to go up in your system. I hope that I have been taking enough. We will soon find out. I was going to get my folate tested, becuase I have been supplementing that also, but then I read on labcorp's website that you cannot take folic acid for a few days before the test. I am going back in a few days to get that done.
I ordered more neupgoen on Fri and they said it would arrive on Saturday. Well, I forgot about it until late Sat night when it did not arrive. I freaked out and called the late night call service. They said that it was shipped to my office and since nobody was there Fed ex took it back on the truck. I told him that this was shipped on ice. Today it finally arrived at my job and to my happy surprise it was still cold. In fact the ice pack was still partially frozen. I was so relieved becuase I did not want to have to deal with trying to return it etc.
Today is CD 13. I went in to check on my follie. I was not sure what to expect. I have had some CM but not a ton and my OPK seems faint but I am not sure. I requested my new favorite nurse C for the second time. She was great last time, so I thought I would try her again. She came in and immediately went to check her notes from last time and was right up to speed. She said that they went to a seminar about using lupron for a trigger. She remembered that I was taking it. She said that they told her that some women need to also add a tiny amount of HCG to it. I said that stuff makes mine grow and thankfully the lupron works on its own for me. She also said the lupron dosage depends on your weight. I was told to take a certain amount and did not know that the amount was calculated based on weight. Now I have another reason why I love this nurse.
Then she did the US and she really took her time. I love that. I had one nice plump 19mm follie on my left. I am so happy. Then the best part came. I was not expecting her to say this. She starts to tell me that my lining is beautiful. It was 10 (mm I think) I have always been told that it was nice, but she got so excited about it. She said it had a triple layer to it. She is so upbeat and happy that it gives me hope that I can do this. Why not? I have a great lining and a great follie brewing. My CM has not been the best ever but I still have it. I took some mucinex and started making myself drink more water.
I am going to take the neupgen tonight and the lupron trigger tomorrow. Then I will continue with the blood thinners and add neupogen/progesterone post peak.
Oh Man another 2ww is coming soon. I am going to try to remain calm and stay off the radar at work. I do not need any drama.
I ordered more neupgoen on Fri and they said it would arrive on Saturday. Well, I forgot about it until late Sat night when it did not arrive. I freaked out and called the late night call service. They said that it was shipped to my office and since nobody was there Fed ex took it back on the truck. I told him that this was shipped on ice. Today it finally arrived at my job and to my happy surprise it was still cold. In fact the ice pack was still partially frozen. I was so relieved becuase I did not want to have to deal with trying to return it etc.
Today is CD 13. I went in to check on my follie. I was not sure what to expect. I have had some CM but not a ton and my OPK seems faint but I am not sure. I requested my new favorite nurse C for the second time. She was great last time, so I thought I would try her again. She came in and immediately went to check her notes from last time and was right up to speed. She said that they went to a seminar about using lupron for a trigger. She remembered that I was taking it. She said that they told her that some women need to also add a tiny amount of HCG to it. I said that stuff makes mine grow and thankfully the lupron works on its own for me. She also said the lupron dosage depends on your weight. I was told to take a certain amount and did not know that the amount was calculated based on weight. Now I have another reason why I love this nurse.
Then she did the US and she really took her time. I love that. I had one nice plump 19mm follie on my left. I am so happy. Then the best part came. I was not expecting her to say this. She starts to tell me that my lining is beautiful. It was 10 (mm I think) I have always been told that it was nice, but she got so excited about it. She said it had a triple layer to it. She is so upbeat and happy that it gives me hope that I can do this. Why not? I have a great lining and a great follie brewing. My CM has not been the best ever but I still have it. I took some mucinex and started making myself drink more water.
I am going to take the neupgen tonight and the lupron trigger tomorrow. Then I will continue with the blood thinners and add neupogen/progesterone post peak.
Oh Man another 2ww is coming soon. I am going to try to remain calm and stay off the radar at work. I do not need any drama.
Friday, October 28, 2011
My New Favorite Nurse
Today I went in for my CD3 baseline follicle scan. You never know what crazy stuff you will find in there. I got a new nurse. I have been going to my clinic for many years now and all the nurses know me by name. The Dr who owns this clinic closed another one that he owns so he brought those nurses here. We introduced ourselved and made small talk. You have to get to know someone before they probe you right? She was very nice her name was C. She said she has been doing this for 30 years. Good, I thought, she has experience.
Then I had to give her my right ovary's history. It has some crazy things that are always there, some of the nurses have had trouble with it. She takes a look and knows what I am talking about. Yeah. I had a large 45 mm cyst from August and it was still there, but it now has an irregular shape and seems to be shrinking. She said that sometimes when they are large they take a while to go away. It was ok bc it was on my right and that one does not really work anyway.
Then she goes to the left. It was a clean slate. YEAH. That means no new cyst!!! Hoorah this is a big deal for me. Then she wins me over and becomes my favorite. She took her time to really check me out. A lot of the nurses do not bother and they just rush. She started to look at my antral follicle count. None of the nurses had ever bothered to count them before. She counts then and tells me the number. I asked her what is normal. She says that it varies so I got worried. I asked her what she thought about mine and she said it was "nice" NICE NICE NICE OH YEAH. I was so excited to hear someone say that my ovary looked nice. I got so excited that I feel hopeful again.
We talked about LUFS and she knew what it was. WOW Nobody knows what that is outside of Napro. I used to request S but now I am going to request C. She seemed to understand me and did not judge me.
I am so excited to have a new favorite nurse......=)
Since I got the BFN I have been thinking about what went wrong. I know that sometimes it takes a normal person a few months, but I am not normal so I worry. I have the lufs under control, the NK under control. I started the blood thinners so now I am wondering if I am taking enough. I go to the Dr for a CBC next week. I am going to try to get a test done to check if I am getting enough. If that is fine, then the last piece must be my uterus. I tested low for uterine embryo protection cells so I may have to find another treatment to address that. I thought the neupogen would cover it but I am not sure. My only other thought is that 3 years ago I had uterine polyps removed and maybe they came back.
Then I had to give her my right ovary's history. It has some crazy things that are always there, some of the nurses have had trouble with it. She takes a look and knows what I am talking about. Yeah. I had a large 45 mm cyst from August and it was still there, but it now has an irregular shape and seems to be shrinking. She said that sometimes when they are large they take a while to go away. It was ok bc it was on my right and that one does not really work anyway.
Then she goes to the left. It was a clean slate. YEAH. That means no new cyst!!! Hoorah this is a big deal for me. Then she wins me over and becomes my favorite. She took her time to really check me out. A lot of the nurses do not bother and they just rush. She started to look at my antral follicle count. None of the nurses had ever bothered to count them before. She counts then and tells me the number. I asked her what is normal. She says that it varies so I got worried. I asked her what she thought about mine and she said it was "nice" NICE NICE NICE OH YEAH. I was so excited to hear someone say that my ovary looked nice. I got so excited that I feel hopeful again.
We talked about LUFS and she knew what it was. WOW Nobody knows what that is outside of Napro. I used to request S but now I am going to request C. She seemed to understand me and did not judge me.
I am so excited to have a new favorite nurse......=)
Since I got the BFN I have been thinking about what went wrong. I know that sometimes it takes a normal person a few months, but I am not normal so I worry. I have the lufs under control, the NK under control. I started the blood thinners so now I am wondering if I am taking enough. I go to the Dr for a CBC next week. I am going to try to get a test done to check if I am getting enough. If that is fine, then the last piece must be my uterus. I tested low for uterine embryo protection cells so I may have to find another treatment to address that. I thought the neupogen would cover it but I am not sure. My only other thought is that 3 years ago I had uterine polyps removed and maybe they came back.
Wednesday, July 6, 2011
Every Difficulty is an Opportunity in Disguise
Well AF showed so last month was a bust. To be honest I was kind of numb to it. Maybe bc I was already so sad a week or so back. This month was my right ovary. This ovary had been asleep since January. This ovary is covered with endo so I never expect that one to work. I was surprised that it took a turn. Since starting the new meds my lufs has been under control. So I have to remember how I suffered with it for a whole year with no hope of it ever getting treated. Now it is finally working.
At the time, I was crushed. But now looking back it was the right decision. Because he would not prescribe it, I sought out a dr who would. I found Dr JB who is a reproductive immunologist, something I had never heard of. He ran tests and I found out I had immune issues. He also helped me to treat my LUFS. Then I thought ok, now this is it. I had suffered for 6 months when I could not get the neupogen and it finally paid off. Then he doubled his fees. He would only speak to me briefly and made me feel uncomfortable to ask questions. I was again upset bc I could not afford him and he was causing stress.
I looked for my options. I found KP who has a phd in immunology. She is wonderful. She is really easy to talk to. She answers all of your questions. I just got my consultation packet from her and I am really impressed. She put together a large packet of information.She explains possible issues and lists possible tests to check for it. She is very thorough. There are many tests in there that Dr. JB never mentioned. It is clear that she is very knowledgeable on the subject. I am very impressed at the time she took to put together this packet.
Dr. JB charged me 1,000 to consult. He ran some tests and then spoke to me for about 15 min. He said he would send me a report. He never did. Then when I pressed him, he sent me a rush job email.
So it is clear to me now, that I was meant to meet KP all along. I had to go through some difficulties to get this opportunity in disguise. If Dr KB had simply done what I wanted, I may have never gotten to this place.
Now I have to speak with Dr. KB to discuss KP's plan and get his approval. Hopefully this will be my final step.
Every difficulty is an opportunity in disguise
This is something that I found on the Internet and it is something I remind myself when I am having trouble. This is also a way of reminding us that God has a master plan for us and sometimes we have to take the scenic route. It helps me to remain patient and let go of the thought that I am in control, when I am really not. Last winter I was at the end of my road, after a year of lufs, there were no new meds available left to try. Then I found the article from Japan about using neupogen. I was so happy, but then my napro Dr was not comfortable using it.At the time, I was crushed. But now looking back it was the right decision. Because he would not prescribe it, I sought out a dr who would. I found Dr JB who is a reproductive immunologist, something I had never heard of. He ran tests and I found out I had immune issues. He also helped me to treat my LUFS. Then I thought ok, now this is it. I had suffered for 6 months when I could not get the neupogen and it finally paid off. Then he doubled his fees. He would only speak to me briefly and made me feel uncomfortable to ask questions. I was again upset bc I could not afford him and he was causing stress.
I looked for my options. I found KP who has a phd in immunology. She is wonderful. She is really easy to talk to. She answers all of your questions. I just got my consultation packet from her and I am really impressed. She put together a large packet of information.She explains possible issues and lists possible tests to check for it. She is very thorough. There are many tests in there that Dr. JB never mentioned. It is clear that she is very knowledgeable on the subject. I am very impressed at the time she took to put together this packet.
Dr. JB charged me 1,000 to consult. He ran some tests and then spoke to me for about 15 min. He said he would send me a report. He never did. Then when I pressed him, he sent me a rush job email.
So it is clear to me now, that I was meant to meet KP all along. I had to go through some difficulties to get this opportunity in disguise. If Dr KB had simply done what I wanted, I may have never gotten to this place.
Now I have to speak with Dr. KB to discuss KP's plan and get his approval. Hopefully this will be my final step.
Monday, April 18, 2011
Update to LUFS Strikes Back
First, I want to thank all of the women who left comments on the last post. It is so hard deal with all of the ups and downs. All of you out there who cheer me on, keep me going. I am so lucky to have support.
I went in today for another US. I dreaded going and seeing that follicle mock me. I cried in the car on the way there just thinking about how big it will be. In the past when I had a lufs cycle I never got another US a week later.
I got myself together and went in to my apt. I have been bold enough to request the nice nurse. Why not? I am tired of getting stuck with the mean one who judges me. So I started asking and they always say yes. The nice nurse came in. She was the one who scanned me on Thursday. So we spoke about what crazy thing will be in there today...Then she said with excitement. "It's gone!"
Yipee!!!! Woohoo!!! I was so happy. So it decided to pop after all. It took its sweet time. So now I have no idea when it popped. Sometime between Thursday and today. My chart is all wacky. I have been taking progesterone suppositories since Thursday night. So now I am concerned whether or not that medicine kills sperm. I never thought about it before, bc you take it 3 days after your peak day when you are in the clear.
Now this raises some questions about my timing. I had told My DH since Thurs to make sure we BD this weekend just in case. But, now I am not sure if the sperm even had a chance.....hmmmmm always adding new thoughts to this puzzle. I have to talk to my nurse to see if she still wants me to get the HPT in one week or wait, since it may not be a true two weeks after...... Even if the progesterone killed off any chance, I am still just so pleased that it popped. You don't know how hard it has been to continue month after month. I spent a whole year dealing with this, and I am finally making some progress..... YEAH back in the game....
So now I have another issue to discuss with my Dr. at the end of the cycle. If I do not have a rupture, do I hold off of the progesterone and then get another US days later????
I went in today for another US. I dreaded going and seeing that follicle mock me. I cried in the car on the way there just thinking about how big it will be. In the past when I had a lufs cycle I never got another US a week later.
I got myself together and went in to my apt. I have been bold enough to request the nice nurse. Why not? I am tired of getting stuck with the mean one who judges me. So I started asking and they always say yes. The nice nurse came in. She was the one who scanned me on Thursday. So we spoke about what crazy thing will be in there today...Then she said with excitement. "It's gone!"
Yipee!!!! Woohoo!!! I was so happy. So it decided to pop after all. It took its sweet time. So now I have no idea when it popped. Sometime between Thursday and today. My chart is all wacky. I have been taking progesterone suppositories since Thursday night. So now I am concerned whether or not that medicine kills sperm. I never thought about it before, bc you take it 3 days after your peak day when you are in the clear.
Now this raises some questions about my timing. I had told My DH since Thurs to make sure we BD this weekend just in case. But, now I am not sure if the sperm even had a chance.....hmmmmm always adding new thoughts to this puzzle. I have to talk to my nurse to see if she still wants me to get the HPT in one week or wait, since it may not be a true two weeks after...... Even if the progesterone killed off any chance, I am still just so pleased that it popped. You don't know how hard it has been to continue month after month. I spent a whole year dealing with this, and I am finally making some progress..... YEAH back in the game....
So now I have another issue to discuss with my Dr. at the end of the cycle. If I do not have a rupture, do I hold off of the progesterone and then get another US days later????
Saturday, April 16, 2011
LUFS Strikes Back
The last two months have been glorious. I was LUFS free. Here is a link to info on LUFS if you are not familiar. I had started seeing a new Dr, started some new supplements and magically it was gone. I thought I had finally moved passed this challenge. I had spent the whole past year trying to find a treatment.
So this month everything was going the same as the last two.On Monday I had some tests done. My follicle reached 27 mm, my LH was over 40 and my progesterone was 1. These were all indicators that I was actually surging on my own. I took the trigger anyway to get an extra boost. The next day I went in and my levels still looked great. My progesterone rose to 3. Then I went in on Thursday, 3 days past trigger, with confidence that I ruptured again. Well to my surprise my LUFS came back. The follicle had grown to 37mm with no sign of any fluid escaping. UGHHHHH The nurse doing my US was in shock. She could not believe it either.
I was so upset. It felt like I got punched in the gut. Here I thought I had moved passed LUFS and was working to treat my immune issues. I wanted to scream, cry, give up. Then I started to think back about what I did differently this month. What did I do? What did I eat? I started to blame myself for not being strict enough. I had actually relaxed a little bc I thought the LUFS was gone. I had some cheese, chocolate, ice cream. I painted my nails, wore perfume. etc. I started to drive myself crazy. That is when I remembered the big change this month. I took femara for the first time. My follicle was much larger than it had been the past two months. I am hoping that it was the Femara bc I can stop that. I know in the past I read about clomid causing LUFS, but there is not too much out there on Femara.
I called the nurse to ask if I should take another trigger or continue to take my estrogen pills etc. She spoke to the Dr and called me back. She said sometimes the follicle opens up and the egg comes out but then the follicle seals back up, so she wants me to continue the estrogen just in case. I had spoken to the Dr about LUFS in January, I know that he does not really think it happens. She said sometimes, well for an entire year, I had the same issue so I know that it is LUFS and not what she said. There was no fluid released and the follicle was perfectly round and it grew 10mm since the trigger. I was really surprised that it grew so fast, that is about 3mm a day. I go back on Monday for p+7 estrogen and Progesterone. She wants me to add an US. So we will see if it got any bigger or not. The estrogen will also be another indicator of whether the follicle ruptured or not.
I guess I just have to ride this one out. I have about a week and a half to go. I do not have hope for this cycle. Maybe a miracle will happen. I get to speak to the Dr myself at the end of the cycle. I will have to ask about the Femara. At this point, I do not think I will take it next month to test my theory and see if I have LUFS or not. My DH was really great and supportive. He kept telling me that at least I am still moving in a forward direction. I wanted to give up and he talked me out of it.
At least I have the sock swap to look forward to. Read about it here. Today is the last day to sign up. Then this weekend I will organize all the match ups and send out the letters. I am also participating so I am excited to get my pair. My vacation starts today. I get the next week off from school.
So this month everything was going the same as the last two.On Monday I had some tests done. My follicle reached 27 mm, my LH was over 40 and my progesterone was 1. These were all indicators that I was actually surging on my own. I took the trigger anyway to get an extra boost. The next day I went in and my levels still looked great. My progesterone rose to 3. Then I went in on Thursday, 3 days past trigger, with confidence that I ruptured again. Well to my surprise my LUFS came back. The follicle had grown to 37mm with no sign of any fluid escaping. UGHHHHH The nurse doing my US was in shock. She could not believe it either.
I was so upset. It felt like I got punched in the gut. Here I thought I had moved passed LUFS and was working to treat my immune issues. I wanted to scream, cry, give up. Then I started to think back about what I did differently this month. What did I do? What did I eat? I started to blame myself for not being strict enough. I had actually relaxed a little bc I thought the LUFS was gone. I had some cheese, chocolate, ice cream. I painted my nails, wore perfume. etc. I started to drive myself crazy. That is when I remembered the big change this month. I took femara for the first time. My follicle was much larger than it had been the past two months. I am hoping that it was the Femara bc I can stop that. I know in the past I read about clomid causing LUFS, but there is not too much out there on Femara.
I called the nurse to ask if I should take another trigger or continue to take my estrogen pills etc. She spoke to the Dr and called me back. She said sometimes the follicle opens up and the egg comes out but then the follicle seals back up, so she wants me to continue the estrogen just in case. I had spoken to the Dr about LUFS in January, I know that he does not really think it happens. She said sometimes, well for an entire year, I had the same issue so I know that it is LUFS and not what she said. There was no fluid released and the follicle was perfectly round and it grew 10mm since the trigger. I was really surprised that it grew so fast, that is about 3mm a day. I go back on Monday for p+7 estrogen and Progesterone. She wants me to add an US. So we will see if it got any bigger or not. The estrogen will also be another indicator of whether the follicle ruptured or not.
I guess I just have to ride this one out. I have about a week and a half to go. I do not have hope for this cycle. Maybe a miracle will happen. I get to speak to the Dr myself at the end of the cycle. I will have to ask about the Femara. At this point, I do not think I will take it next month to test my theory and see if I have LUFS or not. My DH was really great and supportive. He kept telling me that at least I am still moving in a forward direction. I wanted to give up and he talked me out of it.
At least I have the sock swap to look forward to. Read about it here. Today is the last day to sign up. Then this weekend I will organize all the match ups and send out the letters. I am also participating so I am excited to get my pair. My vacation starts today. I get the next week off from school.
Wednesday, March 30, 2011
New Plan for April
I spoke to the reproductive immunologist today. I had a phone consult scheduled for 1:30, but they were swamped when I called so the apt kept getting pushed back. I finally spoke to the Dr around 5:00! I have to admit that while it was annoying I never got angry. How could I get mad at the Dr who made a miracle breakthrough with my case???? He kept apologizing and said he had a crazy day. I can only imagine the number of patients he has locally in addition to the long distance ones like me. I am just so thrilled that he took me on in January without a waiting list.
I am finally going to get my Natural Killer cell level retested. He is calling in the service and I should be able to get it drawn this week or next. He is keeping the same dosage of intralipids as last month. I asked him about starting Femara because I am concerned about my gunky right ovary. I mentioned that I do not want to have to worry about waiting for the left one to take a turn. He said that he thought I did not want to do any meds. I was very happy that he thought that. We had our last conversation about not doing IVF and going natural so I can see why he thought I wanted no meds at all.
I explained that for the past year I had unruptured follicles backing up in my ovaries so I did not want to make it worse. But now, that issue seems to be resolved and I want to get more aggressive. He said that the Lupron trigger from last month probably had some residual effect. He wants me to continue taking the lupron trigger when I can. He said to hold onto the lupron becuase there is a shortage of it. I have about a year's worth of triggers in one bottle, so I am all set.
He said that Femara would make everything stronger and give me a better chance. I am so excited to try this. To be honest I would love to get twins and then be done and not have to worry about struggling to have a second child. I never took this before. I started out years ago with clomid and I hated its side effects. I have read that many women like Femara, so who knows?
I stopped the progesterone last night, so it will take a few days before AF arrives.
I am finally going to get my Natural Killer cell level retested. He is calling in the service and I should be able to get it drawn this week or next. He is keeping the same dosage of intralipids as last month. I asked him about starting Femara because I am concerned about my gunky right ovary. I mentioned that I do not want to have to worry about waiting for the left one to take a turn. He said that he thought I did not want to do any meds. I was very happy that he thought that. We had our last conversation about not doing IVF and going natural so I can see why he thought I wanted no meds at all.
I explained that for the past year I had unruptured follicles backing up in my ovaries so I did not want to make it worse. But now, that issue seems to be resolved and I want to get more aggressive. He said that the Lupron trigger from last month probably had some residual effect. He wants me to continue taking the lupron trigger when I can. He said to hold onto the lupron becuase there is a shortage of it. I have about a year's worth of triggers in one bottle, so I am all set.
He said that Femara would make everything stronger and give me a better chance. I am so excited to try this. To be honest I would love to get twins and then be done and not have to worry about struggling to have a second child. I never took this before. I started out years ago with clomid and I hated its side effects. I have read that many women like Femara, so who knows?
I stopped the progesterone last night, so it will take a few days before AF arrives.
Tuesday, March 29, 2011
Test Day 3/29
Today was test day. I cheated and did some home tests the past couple days. I started with 10DPO to try and catch something early. I have read about many women getting a faint positive early. Mine was bright white from 10dpo to 15dpo. I never even got a hint of anything. The nurse wanted me to get a blood test to confirm. At first I did not want to bother. If the home test was clearly negative, then why waste my time? I consulted some people and emailed the nurse. She said she definitely wanted the BT becuase she said the home tests are not always accurate. I went in for the test and it was negative. At least now I get my results on the computer. I used to dread getting the phone call.
I am bummed, but not devastated. I had the best month ever. I ovulated on my own for the first time in a year. This is a turning point for me. Something had a positive effect on me. This new Dr is working miracles. I have to keep in mind that even with a perfect cycle there is still a small chance. When you find a new issue to tackle, the clock resets. I have only been dealing with the NK cells for one month. I am still not even sure what my NK levels are now that I had the treatment. It may take a few more until the numbers get into the safe zone. I am happy to be making progress and I have to keep that in mind.
I have a phone consult with the Dr tomorrow to see what the plan is. I am wondering what he is going to adjust.
I am bummed, but not devastated. I had the best month ever. I ovulated on my own for the first time in a year. This is a turning point for me. Something had a positive effect on me. This new Dr is working miracles. I have to keep in mind that even with a perfect cycle there is still a small chance. When you find a new issue to tackle, the clock resets. I have only been dealing with the NK cells for one month. I am still not even sure what my NK levels are now that I had the treatment. It may take a few more until the numbers get into the safe zone. I am happy to be making progress and I have to keep that in mind.
I have a phone consult with the Dr tomorrow to see what the plan is. I am wondering what he is going to adjust.
Monday, March 21, 2011
One Week Down, One More to Go
So here I am again. The half way point of the 2WW. This is the first time in a long time that I actually have hope that it might work. I am now getting nervous and starting to doubt myself. I got my p+7 blood results today. Not bad, but not great. My Estrogen was 39 and my progesterone was 3.6 The good news is that my estrogen came down. There were months in the past where it was near 300 which was a sign that I did not rupture. I saw the US so I know that I ruptured this time on my own and a low score like 39 means a rupture also. I was hoping that my progesterone would be higher. It went up which is a good sign, but I thought it would be better. I have been taking supplements so I am not worried about the low level. I did not take it last night bc I had my test today. I took one this morning after my test. It is hard bc I have no idea if the intralipids worked or not. I am not going to get my NK level retested until the end of the cycle.
I have one more week to wait. When you try something new for the first time, the 2ww is tough.
I have one more week to wait. When you try something new for the first time, the 2ww is tough.
Thursday, March 17, 2011
(LUFS) Luteinized Unruptured Follicle Syndrome
Dr. Hilgers is now using Neupogen to treat LUFS and is having success.
When I check my blog stats, I get many search hits for LUFS. The other day one of my readers asked me for more information on it so I decided to post it here. It took me two years before I was diagnosed with LUFS It is very tricky get a diagnosis because all the usual tests could come back normal. Most REs do not even look for it becuase they think they can bypass everything with IVF.
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What is it?
In Luteinized Unruptured Follicle Syndrome, the egg develops within the follicle quite normally and then the follicle turns into the corpus luteum. Even though all hormonal changes take place reasonably normally, the follicle never ruptures and the egg is never released from the ovary. The LH surge is responsible for "leuteinization." Failure to rupture does not mean failure make the transition from an estrogen producing follicle to a progesterone producing unruptured follicle (LUF).
Ovulation and luteinization can be mutually exclusive events. For example, drugs that suppress activity of cyclooxygenase prevent ovulation without affecting luteinization of the follicular wall or circulatory profiles of progesterone characteristic of an otherwise normal luteal phase; The "luteinized unruptured follicle syndrome" is due to a chronic follicular inflammatory response (ie., failure of PGF2a to terminate the preovulatory hyperemic reaction induced by proinflammatory agents, such as histamine).
Taken from http://www.uwyo.edu/wjm/repro/ovarian.htm
What about tests for ovulation?
Most drs check ovulation by measuring the hormones that are being produced during the menstrual cycle. They do not determine whether the actual release of the egg from the ovary has taken place. They make the assumption that if the hormones are being produced in proper amounts then ovulation has occurred. The hormones and the physical release are two separate acts. Since the hormones are being produced, the basal body temperature chart will show a rise; measurement of blood hormone levels will be "normal"; and if an endometrial biopsy is done, it will show that "ovulation" has taken place. However, the follicle will not rupture and there will not be any significant increase in fluid in the pelvis when an ultrasound is done.
======================================================================
My personal experience:
I had a regular 28 cycle, with a positive opk every month that matched up with basal body temp charts. As far as I could tell I was ovulating every month. All my other tests came back normal. The RE labeled me as having unexplained infertility. I tried ovulation drugs for months and then moved on to the shots. I used ovidrel as a trigger. I always had a cyst the next cycle after. One of the nurses said that maybe I was not ovulating. I asked the RE. He said he was 100% sure I was ovulating because I was taking a trigger. I asked him to do an US after the trigger to prove it and he refused. I asked him why I had a cysts every single month and he said my cysts were due to POF.
Then I started Napro. When my dr looked at my Creighton charts and due to continued CM he said it is possible that I have LUFS. My napro Dr tracked my follicle growth with an US. I could see that follicle did not rupture. It would continue to grow past 20mm after I get my LH surge. I tried HCG triggers but they never worked. After I took the trigger, my follicle would actually grow larger. If I got blood work done, or use an OPK it still appeared that I ovulated, even though I know I did not.
I spent a year trying to find something to cure my LUFS. The only treatment available was to use a HCG trigger. I did this and it never made them rupture. When I realized that my only treatment option was not working, I spent hours on the internet researching and came across an article from Japan that uses G-CSF to treat LUFS. I tried to get my dr to give it to me. He was not comfortable since it raises your white blood cells. I went back to the internet and tried to find a dr who would. I came across a specialty known as Reproductive Immunology. I found a dr who uses G-csf in his practice. He ran some immune tests on me and found out that I have elevated natural killer cells. He said this can cause implantation failure and unruptured follicles. He told me to take fish oil and pycnogenol. He suggested I take Lupron as a trigger.
The first time I used the Lupron trigger it worked!!!! I could not believe it. The next month, I went in for my US and saw that my follicle had ruptured on its own before I even took the trigger.
It is frustrating becuase there has not been a lot of research on LUFS so most doctors are not aware. Of all the research I have done, I mostly found articles on horses. The only main article I found on humans was from Japan. Most Drs do not take the time to properly diagnose ovulation disorders and many women are labeled as unexplained. REs just want to bypass every problem with IVF. There seems to be a connection between LUFS and endometriosis. There is now some new research on treating both of these with immune treatments. Napro Technology Drs are also trained to identify and treat LUFS.
======================================================================
Anovulation in Disguise:
- LUFS (Lutenized Unruptured Follicle Syndrome)
- Trapped Egg Syndrome
- Hemorrhagic Anovulatory Follicle Syndrome".
When I check my blog stats, I get many search hits for LUFS. The other day one of my readers asked me for more information on it so I decided to post it here. It took me two years before I was diagnosed with LUFS It is very tricky get a diagnosis because all the usual tests could come back normal. Most REs do not even look for it becuase they think they can bypass everything with IVF.
======================================================================
What is it?
In Luteinized Unruptured Follicle Syndrome, the egg develops within the follicle quite normally and then the follicle turns into the corpus luteum. Even though all hormonal changes take place reasonably normally, the follicle never ruptures and the egg is never released from the ovary. The LH surge is responsible for "leuteinization." Failure to rupture does not mean failure make the transition from an estrogen producing follicle to a progesterone producing unruptured follicle (LUF).
Ovulation and luteinization can be mutually exclusive events. For example, drugs that suppress activity of cyclooxygenase prevent ovulation without affecting luteinization of the follicular wall or circulatory profiles of progesterone characteristic of an otherwise normal luteal phase; The "luteinized unruptured follicle syndrome" is due to a chronic follicular inflammatory response (ie., failure of PGF2a to terminate the preovulatory hyperemic reaction induced by proinflammatory agents, such as histamine).
Taken from http://www.uwyo.edu/wjm/repro/ovarian.htm
What about tests for ovulation?
Most drs check ovulation by measuring the hormones that are being produced during the menstrual cycle. They do not determine whether the actual release of the egg from the ovary has taken place. They make the assumption that if the hormones are being produced in proper amounts then ovulation has occurred. The hormones and the physical release are two separate acts. Since the hormones are being produced, the basal body temperature chart will show a rise; measurement of blood hormone levels will be "normal"; and if an endometrial biopsy is done, it will show that "ovulation" has taken place. However, the follicle will not rupture and there will not be any significant increase in fluid in the pelvis when an ultrasound is done.
======================================================================
My personal experience:
I had a regular 28 cycle, with a positive opk every month that matched up with basal body temp charts. As far as I could tell I was ovulating every month. All my other tests came back normal. The RE labeled me as having unexplained infertility. I tried ovulation drugs for months and then moved on to the shots. I used ovidrel as a trigger. I always had a cyst the next cycle after. One of the nurses said that maybe I was not ovulating. I asked the RE. He said he was 100% sure I was ovulating because I was taking a trigger. I asked him to do an US after the trigger to prove it and he refused. I asked him why I had a cysts every single month and he said my cysts were due to POF.
Then I started Napro. When my dr looked at my Creighton charts and due to continued CM he said it is possible that I have LUFS. My napro Dr tracked my follicle growth with an US. I could see that follicle did not rupture. It would continue to grow past 20mm after I get my LH surge. I tried HCG triggers but they never worked. After I took the trigger, my follicle would actually grow larger. If I got blood work done, or use an OPK it still appeared that I ovulated, even though I know I did not.
I spent a year trying to find something to cure my LUFS. The only treatment available was to use a HCG trigger. I did this and it never made them rupture. When I realized that my only treatment option was not working, I spent hours on the internet researching and came across an article from Japan that uses G-CSF to treat LUFS. I tried to get my dr to give it to me. He was not comfortable since it raises your white blood cells. I went back to the internet and tried to find a dr who would. I came across a specialty known as Reproductive Immunology. I found a dr who uses G-csf in his practice. He ran some immune tests on me and found out that I have elevated natural killer cells. He said this can cause implantation failure and unruptured follicles. He told me to take fish oil and pycnogenol. He suggested I take Lupron as a trigger.
The first time I used the Lupron trigger it worked!!!! I could not believe it. The next month, I went in for my US and saw that my follicle had ruptured on its own before I even took the trigger.
It is frustrating becuase there has not been a lot of research on LUFS so most doctors are not aware. Of all the research I have done, I mostly found articles on horses. The only main article I found on humans was from Japan. Most Drs do not take the time to properly diagnose ovulation disorders and many women are labeled as unexplained. REs just want to bypass every problem with IVF. There seems to be a connection between LUFS and endometriosis. There is now some new research on treating both of these with immune treatments. Napro Technology Drs are also trained to identify and treat LUFS.
======================================================================
More Information:( I will continue to add more as I find new information and links)
Articles on LUFS:
Tuesday, March 15, 2011
First Dose of Intralipids
Yesterday was a very eventful day. It was CD12. I went in to do the usual BW and US and check on my follies. On Friday, I had 16 and 13 on my left. So by my math the larger one would be perfect and maybe the smaller one would catch up. I had a positive opk on Sunday and again on Monday. I have had many positive OPK and then nothing happened so I was not worried. I went in and to my happy surprise they were both gone. I would have never believed it if I hadn't seen it with my own eyes. When I got my blood test results, my estrogen and LH went down and my progesterone went up. I am in total shock.....I finally ovulated on my own!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I told DH that I want a congratulations on your ovulation cake...
Wow, so something is making my ovaries pay attention. Last month the lupron trigger worked and this month I had a release without a trigger....................could it be the fish oil, the pycnogenol, or the co-Q10???? Is is like a game of clue.
Later on that day, I had my first dose of intralipids. This is a food source and not really a medication. It is oil that is supposed to calm down my over active immune system. A nurse came to my home and started an IV. Her technique was great. I did not feel a thing. I have had many IVs put in and they can be very painful. It has to drip slowly so it does not get stuck. It took 3.5 hours. The nurse was very nice. We talked the whole time.
She checked my vitals to make sure I was not having a bad reaction. Everything went smoothly.
After she left, I noticed that I had some spotting. I freaked out bc I have never ever had any type of mid cycle spotting. Then I thought I had a reaction to the intralipids. It was still there this morning, so I called the nurse. She said that sometimes when you ovulate you can have some spotting. It is gone now, so that sounds reasonable. I also Googled it, so I am not worried anymore.
I am waiting for my instructions, but I assume that I will start the progesterone tomorrow. Then I have to wait for the P+7 blood draw and get my NK cells retested to see if the intralipids made a difference.
Wow, so something is making my ovaries pay attention. Last month the lupron trigger worked and this month I had a release without a trigger....................could it be the fish oil, the pycnogenol, or the co-Q10???? Is is like a game of clue.
Later on that day, I had my first dose of intralipids. This is a food source and not really a medication. It is oil that is supposed to calm down my over active immune system. A nurse came to my home and started an IV. Her technique was great. I did not feel a thing. I have had many IVs put in and they can be very painful. It has to drip slowly so it does not get stuck. It took 3.5 hours. The nurse was very nice. We talked the whole time.
She checked my vitals to make sure I was not having a bad reaction. Everything went smoothly.
After she left, I noticed that I had some spotting. I freaked out bc I have never ever had any type of mid cycle spotting. Then I thought I had a reaction to the intralipids. It was still there this morning, so I called the nurse. She said that sometimes when you ovulate you can have some spotting. It is gone now, so that sounds reasonable. I also Googled it, so I am not worried anymore.
I am waiting for my instructions, but I assume that I will start the progesterone tomorrow. Then I have to wait for the P+7 blood draw and get my NK cells retested to see if the intralipids made a difference.
Friday, February 25, 2011
Cycle Review and Update on Supplements
Cycle Review:
Spoke to my wonderful napro Dr today. (Dr KB) for my cycle review. I had so much to tell him about my adventures with the RI. I was also excited to tell him about my progress. This is the first time in a year that my follicle ruptured thanks to the lupron trigger. When I told him, I was finally able to accept success (You get so used to constant disappointment that you build up a wall to protect yourself. I was scared to admit that this worked, becuase it may not work again next month and I didn't want to get my hopes up and get crushed.) It was nice to be able to celebrate a small victory with someone who understands how hard it was to get to this point.
Then we spoke about my immune tests and how I was diagnosed with elevated killer cells. He mentioned
Low-dose naltrexone. He said that Dr. Hilgers uses it to treat women with Endo. There is another Dr. in Ireland who also has success with it. He did not know exactly what it did, but he said that it interacts with the immune system. He suggested that I go ahead with the RI and do the intralipids first to see what that does. This will also give me time to do some research to see if this would be an option for the future.
When I Googled it, it was very hard to make a decision. Some sites said it raised NK cells, some said it lowered them, and one said it would stop them at first but if you continue to take it then it would raise them. It seems that LDN is used for many auto immune conditions, so it may be hard to tell.
I checked Dr.Beers book and could not find any mention of it. I also posted on my forums to see if someone knows more than me. I am excited becuase I am now making some progress and I am trying the intralipids for the first time next month.
Update on Supplements:
Today is the one month mark of my new supplements. Last month, I was afraid of how my GI tract would handle them. I am happy to report that nothing bad happened. I have been taking a tablespoon of fish oil every night. It is not too bad, it tastes like lemon. (I opted for one spoonful versus four pills.) The only pill I did not take was the resveratrol becuase when I did some research, it mentioned affecting your estrogen and not to take it if you are sensitive to it. When you have endometriosis and fibroids you stay away from excess estrogen.
.
Spoke to my wonderful napro Dr today. (Dr KB) for my cycle review. I had so much to tell him about my adventures with the RI. I was also excited to tell him about my progress. This is the first time in a year that my follicle ruptured thanks to the lupron trigger. When I told him, I was finally able to accept success (You get so used to constant disappointment that you build up a wall to protect yourself. I was scared to admit that this worked, becuase it may not work again next month and I didn't want to get my hopes up and get crushed.) It was nice to be able to celebrate a small victory with someone who understands how hard it was to get to this point.
Then we spoke about my immune tests and how I was diagnosed with elevated killer cells. He mentioned
Low-dose naltrexone. He said that Dr. Hilgers uses it to treat women with Endo. There is another Dr. in Ireland who also has success with it. He did not know exactly what it did, but he said that it interacts with the immune system. He suggested that I go ahead with the RI and do the intralipids first to see what that does. This will also give me time to do some research to see if this would be an option for the future.
When I Googled it, it was very hard to make a decision. Some sites said it raised NK cells, some said it lowered them, and one said it would stop them at first but if you continue to take it then it would raise them. It seems that LDN is used for many auto immune conditions, so it may be hard to tell.
I checked Dr.Beers book and could not find any mention of it. I also posted on my forums to see if someone knows more than me. I am excited becuase I am now making some progress and I am trying the intralipids for the first time next month.
Update on Supplements:
Today is the one month mark of my new supplements. Last month, I was afraid of how my GI tract would handle them. I am happy to report that nothing bad happened. I have been taking a tablespoon of fish oil every night. It is not too bad, it tastes like lemon. (I opted for one spoonful versus four pills.) The only pill I did not take was the resveratrol becuase when I did some research, it mentioned affecting your estrogen and not to take it if you are sensitive to it. When you have endometriosis and fibroids you stay away from excess estrogen.
.
Friday, February 18, 2011
Possible victory
Wow, the past three days have been tough. I called my local RE today and asked about intralipids. The nurse was very nice and explained to me the breakdown of the cost. She said that they charge $100 to do the IV and the meds usually cost about $100. So it would be $200 for the month. There would be no extra Dr monitoring fee. (The RI wants to charge me 200 plus meds, and would not tell me the cost of the meds.)
She said that sometimes the insurance will cover it, but I should expect to pay in full to be safe becuase they will bill insurance and then I have to pay the left over. They only want me to pay per month and not 3 up front like the RI wanted. Okay, so this felt reasonable and I felt like she was giving me proper attention. I asked her about blood tests to follow up and she said they did not do them. The nice nurse also said to start next month since I was already post peak and I should take the meds a few days before peak. I agreed especially since I am paying a lot I want to do this right. Later today the pharmacy called me and said it was partially funded by insurance (they called the insurance and checked) so the cost of the meds is now down to 67. They are shipping the meds to the RE. I will not know if they will pay for the iv until after I get it done.
I have to see what I want to do about the blood tests. Do I really need them??? I am still waiting to hear back from my napro Dr, bc I am going to ask him if will write me a prescription for the blood tests. If not, I will have to contact the RI and see what kind of price deal I can make to just do the blood tests and not have him order the meds.My logic is she said it was 200 to order meds, liability, and the blood tests, so I should be able to knock that price down some more to only do blood work
So the possible victory....
I went in for my P+3 US to confirm that my follicle ruptured. Well it was my lucky day bc they asked me which nurse I wanted and my favorite nice nurse J was there. She does not judge me and she takes her time and explains everything. She said my lining looked great and luteal. I think my follicle ruptured which would be a huge victory. My ovary is covered in junk and I have a large pocket of fluid so it was really hard for her to say 100%. But, I did not see the obvious follicle. Usually I go in and it has grown and will mock me. In fact she said she saw a possible corpus luteum.......Woah!!!!! I have never heard those words before. This is all due to the lupron trigger. This was my first time taking it so I cannot say that it is really working until it happens again. I will take my happy thoughts bc I really needed some today. So if this is true then it will be a huge victory bc I have only had one other possible rupture in a year. I have to remember that I still have to address my new challenge which is the killer cells. BTW: The lupron only cost me $5.00 and it has 14 uses in one bottle....so that will be a great money saver.......
She said that sometimes the insurance will cover it, but I should expect to pay in full to be safe becuase they will bill insurance and then I have to pay the left over. They only want me to pay per month and not 3 up front like the RI wanted. Okay, so this felt reasonable and I felt like she was giving me proper attention. I asked her about blood tests to follow up and she said they did not do them. The nice nurse also said to start next month since I was already post peak and I should take the meds a few days before peak. I agreed especially since I am paying a lot I want to do this right. Later today the pharmacy called me and said it was partially funded by insurance (they called the insurance and checked) so the cost of the meds is now down to 67. They are shipping the meds to the RE. I will not know if they will pay for the iv until after I get it done.
I have to see what I want to do about the blood tests. Do I really need them??? I am still waiting to hear back from my napro Dr, bc I am going to ask him if will write me a prescription for the blood tests. If not, I will have to contact the RI and see what kind of price deal I can make to just do the blood tests and not have him order the meds.My logic is she said it was 200 to order meds, liability, and the blood tests, so I should be able to knock that price down some more to only do blood work
So the possible victory....
I went in for my P+3 US to confirm that my follicle ruptured. Well it was my lucky day bc they asked me which nurse I wanted and my favorite nice nurse J was there. She does not judge me and she takes her time and explains everything. She said my lining looked great and luteal. I think my follicle ruptured which would be a huge victory. My ovary is covered in junk and I have a large pocket of fluid so it was really hard for her to say 100%. But, I did not see the obvious follicle. Usually I go in and it has grown and will mock me. In fact she said she saw a possible corpus luteum.......Woah!!!!! I have never heard those words before. This is all due to the lupron trigger. This was my first time taking it so I cannot say that it is really working until it happens again. I will take my happy thoughts bc I really needed some today. So if this is true then it will be a huge victory bc I have only had one other possible rupture in a year. I have to remember that I still have to address my new challenge which is the killer cells. BTW: The lupron only cost me $5.00 and it has 14 uses in one bottle....so that will be a great money saver.......
Tuesday, December 28, 2010
What a rollercoaster ride!
Oh man where to start? My life is one huge roller coaster. Yesterday I went in for my P+7 bw. I did not take any triggers this month, so I know that it would not be ideal. WHen I got the results my heart sank. I usally have progesterone around 15. This time is was 3.5 OUCH REALLY? The only other time it near that level was August when I also did not take the trigger. So maybe the triggers actually did something? but then I never got pregnant so they did not do enough. My estrogen was also really low 25!!! SO I got really depressed and did the two things I do when I get bad news. I eat junk and then I spend all day doing Internet research. Yesterday I found nothing and gave up. Today I sat here for about 3 hours straight-no lie and finally found something good! Oh man so now my pulse is racing and I am up again.....I am used to being up and down so I try to enjoy the up before I crash again.
I found a yahoo forum based on reproductive immunology. There were many posts about using G-csf! This is the drug from that study in Japan that said it can cure LUFS, the one my Dr is too chicken to try. So I started to read all the posts. Most of the interest was using the drug to prevent implantaion failure, but there was a huge interest. At first everyone lamented over the fact that no dr would use this drug. Then there was a woman who found a dr, used the treatment, and got pregenat!!!!!!!!!!!!!!!!!! Holy Cow. This Dr is in NYC. I checked out his webpage. The only downside is that he does do IVF, but I won't do that with him. I just want his to give me the drug that might cure me..........
So now I am trying to calm down and not be too impulsive. My current Dr who I love and have been with this whole year has been dragging his heels. Do I contact this new Dr first or wait to see what my current dr says? Oh man. I cannot wait....
I am so excited!!!!!!!!!!!
I found a yahoo forum based on reproductive immunology. There were many posts about using G-csf! This is the drug from that study in Japan that said it can cure LUFS, the one my Dr is too chicken to try. So I started to read all the posts. Most of the interest was using the drug to prevent implantaion failure, but there was a huge interest. At first everyone lamented over the fact that no dr would use this drug. Then there was a woman who found a dr, used the treatment, and got pregenat!!!!!!!!!!!!!!!!!! Holy Cow. This Dr is in NYC. I checked out his webpage. The only downside is that he does do IVF, but I won't do that with him. I just want his to give me the drug that might cure me..........
So now I am trying to calm down and not be too impulsive. My current Dr who I love and have been with this whole year has been dragging his heels. Do I contact this new Dr first or wait to see what my current dr says? Oh man. I cannot wait....
I am so excited!!!!!!!!!!!
Saturday, November 6, 2010
Possible Treatment for LUFS
I have LUFS, which is Luteinized Unruptured Follicle Syndrome. With this condition, I have normal 28 cycles. I have normal BBT rises. I get a positive OPK. I even get a progesterone level over 15, at 7DPO. It all makes it look like I am normal. BUT I do not actually ovulate. My follicle does not pop.This is why the RE told me there was nothing wrong with me and IVF was the only way to go.
I came across this LUFS treatment Article on the internet. It was written two years ago by a DR. in Japan. Here is my summary on it becuase the article is very complicated to read. Right before ovulation there is an increase in some type of white blood cells. This reacts with the follicle wall. It makes it thinner, so that when you get the LH surge it will pop open. This makes complete sense for me. I can grow a normal follicle on my own, but they never pop. THis medicine is supposed to increase your white blood cells to provide the missing reaction.
I was very excited to have an option to pursue becuase it seems that everything else has failed. I emailed the Dr in Japan and he emailed me back the next day. He is still doing the research and now has a 90% success rate. I asked my Dr about it. He said that he never heard of it before. He is going to call the Dr in Japan and ask him about the research and then he will consider treating me with it....... I am so excited that I may finally have a real treatment after 3.5 years of infertility........
I am pasting the response from the Dr in Japan below...
__________________________________________________________________________________
Thank you very much for your interest in my research!
If your LUFS is not caused by severe adhesion of around ovaries due to endometriosis, pelvic surgeries, etc, the treatment using G-CSF is effective at the rate of more than 90 %. The number of our clinical trial reached to 70 cycles and the effective rate is more than 90%.
We will publish the new paper in English regarding our clinical trial, when the numbers of the cycle reach to 100 cycles.
G-CSF is widely used in the field of cancer treatment to increase the number of Granulocytes. In the USA, it is marketed by Amgen with the brand name Neupogen (filgrastim), although we are using another type of G-CSF, lenograstim. There are no differences between them.
In our country, we can use any drug for any purpose, if patient gives her doctor an informed consent.
I don't know the situation in the USA. If the situation is the same, you can receive G-CSF treatment by your doctor.
Until today, we have no side effects of G-CSF in our clinical trial.
If your doctor has more questions, I am willing to answer his questions.
Thank you again for your interest!
with best regards,
Yours sincerely,
********************************************
Satoru Makinoda, M.D.
Professor and Chairman
Department of Obstetrics and Gynecology
Kanazawa Medical University
Uchinada
920-0293 Japan
E-mail:mak@kanazawa-med.ac.jp
Tel.:+81-76-218-8142
Fax.:+81-76-286-2629
********************************************
I came across this LUFS treatment Article on the internet. It was written two years ago by a DR. in Japan. Here is my summary on it becuase the article is very complicated to read. Right before ovulation there is an increase in some type of white blood cells. This reacts with the follicle wall. It makes it thinner, so that when you get the LH surge it will pop open. This makes complete sense for me. I can grow a normal follicle on my own, but they never pop. THis medicine is supposed to increase your white blood cells to provide the missing reaction.
I was very excited to have an option to pursue becuase it seems that everything else has failed. I emailed the Dr in Japan and he emailed me back the next day. He is still doing the research and now has a 90% success rate. I asked my Dr about it. He said that he never heard of it before. He is going to call the Dr in Japan and ask him about the research and then he will consider treating me with it....... I am so excited that I may finally have a real treatment after 3.5 years of infertility........
I am pasting the response from the Dr in Japan below...
__________________________________________________________________________________
Thank you very much for your interest in my research!
If your LUFS is not caused by severe adhesion of around ovaries due to endometriosis, pelvic surgeries, etc, the treatment using G-CSF is effective at the rate of more than 90 %. The number of our clinical trial reached to 70 cycles and the effective rate is more than 90%.
We will publish the new paper in English regarding our clinical trial, when the numbers of the cycle reach to 100 cycles.
G-CSF is widely used in the field of cancer treatment to increase the number of Granulocytes. In the USA, it is marketed by Amgen with the brand name Neupogen (filgrastim), although we are using another type of G-CSF, lenograstim. There are no differences between them.
In our country, we can use any drug for any purpose, if patient gives her doctor an informed consent.
I don't know the situation in the USA. If the situation is the same, you can receive G-CSF treatment by your doctor.
Until today, we have no side effects of G-CSF in our clinical trial.
If your doctor has more questions, I am willing to answer his questions.
Thank you again for your interest!
with best regards,
Yours sincerely,
********************************************
Satoru Makinoda, M.D.
Professor and Chairman
Department of Obstetrics and Gynecology
Kanazawa Medical University
Uchinada
920-0293 Japan
E-mail:mak@kanazawa-med.ac.jp
Tel.:+81-76-218-8142
Fax.:+81-76-286-2629
********************************************
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