Luteinized Unruptured Follicle Syndrome (LUFS)

April 2014 Update: I ovulated with the help of Cytotec prescribed by PPVI. See my timeline for more information. 

I took my HCG trigger shot about 48 hours ago, 36 hours following my 2nd Neupogen injection. I won't be able to have an ultrasound until Thursday since we're out of town. It is becoming glaringly obvious that I have yet another LUF. The pain and discomfort are unmistakable.

I was first diagnosed with an LUF in October 2011, only a few months after we started TTC. My family practice doctor ordered an US and shockingly the radiologist identified the cyst on my ovary as an LUF (shocking because most medical professionals don't know what they are). My family practice doctor didn't have much input to offer (she'd never heard of them).

I did hours of research online and found very little information. I found a handful of medical journal articles but they were from as far back as the 1980s which told me not much research was being done on this issue anymore.

In December of 2011, we went to an Reproductive Endocrinologist for evaluation. I assumed they would easily be able to tell me whether or not I ovulated based on ultrasounds and blood work. Boy was I wrong. Apparently only the Napro ultrasound series does this. The RE was just making sure my hormones rose as they should and checking to see how many follicles I had in a given cycle. The trouble with LUFS is that hormones and ultrasounds usually look pretty normal- the problem doesn't occur until after the time of assumed ovulation so it commonly goes undetected.

When we met with RE to review our test results, she told me nothing was wrong. I showed her the stack of medical journal articles I had printed out. They talked about LUFS and said 80% of women with LUFS have endometriosis. She told me LUFS wasn't real.

I look back on that experience and I feel infuriated for the many women who seek this doctor's care (and so many other's like her) who don't know there are other options, who have to tolerate the status quo and never have the actual cause of their infertility identified.

I have never felt tempted to even consider IVF but my understanding is that IVF wouldn't even be an option for us since my eggs are never released. For some reason, I find that incredibly depressing that even using illicit means we'd never be able to have biological children. It just feels like a new level of hopelessness. Of course, the other way of looking at it is that we are beyond blessed by Napro- maybe even more than the average couple. Napro is literally the only means of treating this problem. No one else has a clue what to do.

During my research the most helpful page I found happened to be a fellow Catholic IF blogger's post. I have her permission to share it with you here:

Thursday, March 17, 2011

(LUFS) Luteinized Unruptured Follicle Syndrome


Dr. Hilgers is now using Neupogen to treat LUFS and is having success.

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.


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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.


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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.

LUFS- Simone's Journey