Monday, March 3, 2014

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.

15 comments:

  1. I am sorry you have another LUF! I also went in for the p+4 u/s last Friday...BIG FAT LUF. Actually 2 of them...which is really weird. I wasn't even on clomid last cycle, so why 2 follicles? Who knows. I really hope you see some results with the neupogen - is that the same as lupron? How did you get on it? Did you approach your doc?

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    1. Ughhh! I'm so sorry you're dealing with this too! I think I had 2 LUFS a couple cycles ago too. I'm not on clomid because apparently I hyper-respond to even sub-therapeutic doses. Neupogen is very different from Lupron from what I understand. Neupogen is most commonly used in conjuction with chemotherapy to increase white blood cells and lower the risk of infection. Apparently, it can help 'soften' the follicle and increase the liklihood it will rupture. The blog I linked to above has a lot of great info on the topic. Are you being treated by PPVI? Have you used Lupron before? I got Neupogen because PPVI does use it but I think it's a last resort. They kept prescribing just an HCG trigger and it never worked. Sometime last summer an amazing lady in the facebook group offered her leftover Neupogen injections to whomever wanted them. I had previously ruled out the treatment because it costs about $1,000 a shot and my insurance provides 0 coverage for anything meant only to treat infertility. We waited awhile to move forward with the Neupogen bc my doc thought that if she removed scar tissue from my last surgeries the LUFS might resolve. I had surgery for this purpose in October and we haven't seen an improvement so in January she decided I should start the Neupogen.

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    2. Sorry I am only just now seeing the reply comment! Yes, I am being treated at the PPVI and have been a patient there since May 2007 (longgg time now). We discovered LUF in June 2012 (fairly recently) since I had gotten married in October 2011 and they were looking for reasons we weren't conceiving. I have never used Lupron or Neupogen. Basically I am just desperate for SOMETHING to cure the LUFS. I did the HCG trigger once this past November...didn't work. What facebook group are you referring to? Knowing that Neupogen costs $1,000 and that it probably won't be covered by insurance, it's out of the question for us. We are saving for a down payment/adoption but only have enough set aside to meet our HSA deductible (which I anticipate doing this year with what covered treatments/meds are available). I am thinking about approaching our doc about one more surgery...my last one was June 2012 and at 18 months post surgery with LUFS, our chance of conceiving is like 30% and going down. I think I have scar tissue since I always have pain. AND during that last surgery Dr. Keefe said my ovaries were covered in scar tissue (I am guessing that was a result of my Dec 2008 ovarian wedge resection). She removed what scar tissue she could but every cycle they've done an U/S series since that surgery, a big fat LUF is present. I am just at the end of my rope with medical treatment and want the PPVI to come out and just say "everything we do for you is experimental" and we don't really know what causes LUF/how to cure it. Then I feel like I could accept this, and move on peacefully knowing I tried my best. The one thing I could do I guess is follow a crazy strict anti-inflammatory diet...but the idea of giving up all caffeine, sugar, most meats, dairy, etc. is overwhelming. I'm already gluten intolerant and that is a stretch. To take my morning coffee and cheese would set me over the edge I think. Have you tried this diet? Maybe if someone showed actual positive results with fertility I would really give it a try. Well that was a ramble. We should probably email next time! LOL

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  2. Bummer :( I'm sorry. Napro has done a lot for so many people. Thinking of you.

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    1. Yes, major bummer! Thank you for your thoughts:-). I really am grateful for Napro. I can't imagine how insane I would feel right now if we didn't have a reason for what was happening!

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  3. UGH! I am so sorry you're dealing with LUFS. Patiently Waiting and I both had them and discovered them at the same time. I wasn't being treated by PPVI, and even though my doctor in PA consulted with Hilgers, she didn't have a recommendation for me to try the neupogen. I had 4 straight months of LUFS as shown through consecutive ultrasounds, and the HCG didn't work for me at all. I think I tried 2 months of the HCG. (It's been a few years.) Of course, at the end of month 4, we adopted and decided to post-pone any further treatment.

    I really really hope and pray that it may be a solution for you!

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    1. How wonderful you were called to adoption and both on the same page! We are beginning the process but my DH is still tentative. The Neupogen protocol is still pretty experimental I think. I think the blogger linked above may have even had something to do with getting Dr. Hilgers to look into it. HCG has thus far been completely useless for me (except for making the LUFS bigger). I'll keep you posted on the Neupogen maybe it could help you one day too!

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  4. I've always been curious about LUFS. Thanks for sharing! This was a really informative post. I'm very happy you are working with the best docs out there now for LUFS. I hope docs start to learn more about LUFS so that no one is made to feel like their medical issue is "made up" or "non-existant" as you did. So sorry for that.

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  5. I'm so sorry, that sounds unbelievably frustrating. =( I'm glad you have others to talk to about LUFS who have experienced that too (well, not "glad" but you know what I mean). Praying you find something that works!

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  6. That is a lot of great information in one place! The unfortunate fact is that fertility is such a complex area of health that some fraction of people are going to have problems that haven't yet been well studied yet. I think that makes it even worse when there aren't solid answers to why the treatments aren't working and what you should do next. I hope and pray that they come up with some solid ideas.

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  7. Thanks so much for sharing your story. I too have dealt with LUFs for several years. Have struggled to find information on them, and feel a little better knowing I'm not the only one. PPVI has been wonderful, though no miracle cure yet. Am to the point now that I don't need an ultrasound, can tell the doc even before she looks that there's a big fat LUF there. Thank goodness for IM progesterone!

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    1. I am so sorry you're dealing with this issue too! Thank you for reaching out. It's wonderful you're getting help at PPVI. I am not sure if you saw this in my more recent posts but I ovulated with the help of Cytotec ( a VERY inexpensive drug) prescribed by PPVI. I'll be trying round 2 of it this month. I'm glad I'm not the only one that can feel the stupid fat LUFs every month. It is crazy. It literally feels like something inside your ovary is trying to explode and can't. Yes, thank goodness for IM progesterone! I'll pray you are cured of this sooner rather than later!

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  8. is this true @Jess, my wife has LUFS and the journey has been arduous. We just had IVF at a diff hosp. and the Dr noticed a cyst at the start of stimulation phase but he went ahead wt it. Now we are almost thru wt d 2WW and she has bn bleeding since 9DPT of 3 blastocyst.. I think the blood work is a formality now though i believe in miracles. I have bn on the internet to find info on LUFS rx cos from my experiece , HCG is useless!

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