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.
Wednesday, March 30, 2011
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, March 11, 2011
Happy Day! CD9
Today is CD9. I went in for US and BW. I have two follicles on my left, 16 and 13. (no stims) This is great news because my left ovary is clean and happy. The right one is a mess. I am getting the intralipid infusion done on Monday. A nurse is coming to my house to set up the IV. It will take about 3 hours. My RI uses Trinity Home Care which is part of Walgreen's pharmacy. This will take about 3 hours. Having a home nurse is great becuase I do not have to take off from work. She is coming at 3:30. This company is great. They were very helpful and prompt. I got set up and then they shipped me the meds and supplies today. Then they called to make sure I got the box becuase ups said they left it at the front office at my job.
They included everything needed from alcohol, gloves, needles, gauze, tape, tubes, etc to start the IV. They even included the pole! (I have not assembled it yet.) Then they also sent me a kit to administer epinephrine in case I have an allergic reaction to the intralipids. Wow! I could not believe all the stuff they sent. I thought I had a lot of supplies with my needles and sharps containers, but this was amazing.
The best part.............drum roll.................................
It was free!!!! I did not believe it until I saw the packing slip. The Dr coded it under immune issues and my insurance covered it. So even though the RI is kind of pricey, I am starting to see that he is worth it, becuase I read that the intralipids can cost a minimum of 200.
So everything looks great so far. My ovary is behaving.I go back on Monday for another US scan.
I just pray that I only need one dose of intralipids to bring down my NK and magic happens.
(Here is a photo of all the supplies. The intralipids are in the fridge.)
Monday, March 7, 2011
CD5 March 2011
So it all begins again. CD3 fell over the weekend so I went in on CD5. I wore my first pair of fun socks today. I got some polar bear socks. It was fun to wear them and it sparked some conversation with the nurse about polar bears. My us looked good. My right ovary is the same as ever-full of gunk but no cysts. Yeah! Right was the active one last month. Then the left one showed some small buds, but no cysts. Yeah! I am hoping that this will be the active ovary this month because it is clean. My BW came back mostly normal. LH 1.75, Progesterone .3, TSH 1.19, FSH 5.2 and Estradiol 168. At first I was very happy about the low FSH bc last month it was 37, but then I read that high E can make it lower. I was unable to find out just how high it would have to be to make a difference, so I am not sure what to think. This might support my theory that my right ovary is in distress so it made my FSH high last month and my left ovary which is happy has a low one. I also have to consider that this was day 5 and not day 3 so maybe my estrogen is okay???? It seems from the us that I have two buds on the left. It is typical for me to get two active follicles on the left. So I was thinking that maybe both of them just started growing???
I really think it was silly to get BW done on me since I am not doing stims, but the RI wanted it and I want to play nice. All the CD3 BW really tells the Dr is an estimate of how you will respond to stims, the reserve you have left, and the quality. None of that really matters to me bc I am going natural and I get what I get.
I go back on Friday to see what's cooking. I am going to do intralipids for the first this month to bring down my NK level. I am not clear on when. I know the nurse said before I trigger, but I am going to email her and ask her for more details.
At this time in my cycle, I am happy. I have been battling cysts for a very long time. It seems that I am on the right path with the Lupron trigger becuase I did not have a cyst at the start of this cycle. (It seems that the HCG trigger caused me to have cysts at the start of my cycle) We will see what Friday brings.
Saturday, March 5, 2011
March is Endometriosis Awareness Month
*Sign the petition to get a stamp made to raise funds to find a cure.
The disease, for which there is no absolute cure, affects nearly 10 million women and girls in the United States alone and another 70 million globally. Endometriosis is a leading cause of female infertility, chronic pelvic pain, immunologic disruption, and pelvic surgery in the United States. In addition, the disease accounts for more than half of the 600,000 hysterectomies performed in the U.S annually.Endometriosis is a reproductive and immunological illness. Mistakenly stigmatized as merely painful periods, Endometriosis is far more than just "killer cramps". It occurs when tissue that lines the uterus is found outside the uterus -- usually in the abdomen on the ovaries, fallopian tubes, and ligaments that support the uterus. It can spread to other organs such as the bladder, liver and intestines. Less commonly they are found in the lung, arm, thigh, diaphragm, and other locations.
This misplaced tissue develops into growths or lesions which respond to the menstrual cycle in the same way that the tissue of the uterine lining does: The blood and tissue shed from endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from the lesions, and inflammation. It can cause pain, infertility, scar tissue formation, adhesions, and bowel problems.
Yet, despite being one of the most highly prevalent and costly diseases of our time, Endometriosis continues to be mistakenly treated as an insignificant, obscure ailment. Awareness is largely lacking among the lay and medical communities alike. Is Endometriosis curable?
There is currently no absolute cure for Endometriosis, but there are several methods of treatment, which may alleviate some of the pain and symptoms associated with it. You can have surgery to cut it out. Make sure that you see a dr who specializes in the removal of endometriosis. Many drs do not go deep enough and then it comes back. A surgeon trained in Napro Technology has expert training in the proper removal of endometriosis.
The amount of pain associated with the disease is not related to the extent or size of the implants. Some women with Endo have no symptoms, others have debilitating pain and even infertility. Some fairly common signs that may lead you to suspect Endo can be found here http://hope2endure.org/endo-faq
How is it diagnosed?
The only way a positive diagnosis of Endo can be made currently is via surgery, either a laparoscopy or the more invasive laparotomy, where biopsies are taken from suspected sites. It can also be visualized during surgery if the surgeon knows what to look for. Ultrasounds, MRIs, CT Scans and other diagnostic tests are not conclusive. The ERC does not support “medical diagnoses,” such as administering GnRH therapy prior to a surgical diagnosis.
The only way a positive diagnosis of Endo can be made currently is via surgery, either a laparoscopy or the more invasive laparotomy, where biopsies are taken from suspected sites. It can also be visualized during surgery if the surgeon knows what to look for. Ultrasounds, MRIs, CT Scans and other diagnostic tests are not conclusive. The ERC does not support “medical diagnoses,” such as administering GnRH therapy prior to a surgical diagnosis.
Why does endometriosis cause infertility?
Some women also have an immune response that will cause infertility. This can cause implantation failure and poor egg quality. You will need to see a reproductive immunologist to get tested and treated.
There is no current manner of preventing Endometriosis, and it is not a disease which is “contracted” or “caused” by anything the patient did – nor is it contagious. It is, however, highly suspected to be genetic.
http://www.theendoclub.com/theendodiet.htm
http://relieveendometriosis.com/foods-to-avoid-on-an-endometriosis-diet/
http://www.endo-resolved.com/order.html
Links:
http://www.endometriosisassn.org/donate_research.html
http://hope2endure.org/
http://www.endofound.org/
http://www.endometriosis.ca/
http://www.endometriosisfoundation.org/
http://en.wikipedia.org/wiki/Endometriosis
http://www.endometriosis.org/
The World Endometriosis Society Produced it's first educational video
*If you have been diagnosed with endometriosis, please consider participating in the research study.
It took me 5 minutes at home.Wednesday, March 2, 2011
Trying to Stay Positive
Well, this has been a tough week. I POAS and got BFN and now AF is getting near. I did not really expect anything after my RI told me I had elevated NK, but that doesn't make it hurt any less. In fact this time, I took it really hard that my body was rejecting my baby....
Then there is all the drama with the economy. I am a teacher and it's now getting really tough for schools. The Governor is trying to make huge cuts that will force schools to close or lay off tons of teachers. It is so sad. Last year the president said we had to have higher standards and more testing. Now we get less money which means less teachers and larger classes. So we have to do a better job with less resources and a higher case load.
So I started to spiral and get really sad.
Then there is all the drama with the economy. I am a teacher and it's now getting really tough for schools. The Governor is trying to make huge cuts that will force schools to close or lay off tons of teachers. It is so sad. Last year the president said we had to have higher standards and more testing. Now we get less money which means less teachers and larger classes. So we have to do a better job with less resources and a higher case load.
So I started to spiral and get really sad.
I had to step back and try to stay positive......so I made a list...
- I got some new fun socks today with roses on them to wear at my next US apt.
- My dh is wonderful and tried to make me feel better today while I freaked out at work.
- Everyone around me is getting a nasty stomach bug and due to my elevated NK I won't get it.
- I am going to try some new treatment this month that may finally be the thing that works.
- I have some wonderful blog buddies to share in my pain and my joy.