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.
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More Information:( I will continue to add more as I find new information and links)

Articles on LUFS

34 comments:

  1. WOW! Now I understand why you are so thrilled about the lupron shot!!! CONGRATULATIONS!!!! And thank you for the info.

    I am a Reproductive Immunology patient with Dr Kwak Kim currently almost 11weeks pregnant and I am so happy you are finding your answers!! Lots of prayers coming your way! Thanks again!

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  2. This is so informative. I really appreciate you spelling this all out. How did your chart indicate possible LUF? Just curious what your biomarkers showed? I am asking b/c I was dx with immature follicles. 2 rounds of US showed them both premature rupturing at 1.82 and 1.87. My Md says thats too small and looking for 2.2-2.5. I am now taking low dose of femara again. But like you all my opk's are positive and I just do not know what the deal is hormonally that that keep popping prematurely!!

    Again, this was SO helpful.

    O, and I have researched ALL over the internet this: When you prematurely rupture..do you still release an egg (ovulate). I can not find that anywhere. I will ask my napro Md. Do you happen to know the answer?

    Again, SO HAPPY FOR YOU!!!!!

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    1. Everything usually looks normal with LUFS, only when you go get an ultrasound after your trigger shot (which is supposed to release the egg), you find out the egg didn't release from the follicle.

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  3. My chart showed a continuous CM pattern. I used to have over 10! I had to use yellow stamps. This month was my best ever. I only had 6 days of cm. I am also curious about your premature release. I would say that 18.2 and 18.7 were mature. Most Drs look for 17 to 20. I was always told my take my trigger after it reached 17. So hmm that is interesting. Is he seeing something on your US to make him think they are not mature? I am sorry that I do not have more info on this topic.

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  4. I didnt know that lots of yellow stamps can indicate that. Interesting- I did read that about the maturity- some Md's look for anything over 1.8cm/18mm. But I guess I have to believe her b/c i havent had one bfp yet. I just want fat follies!!! thanks again for your help.

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  5. Thank you for the information first hand! It's hard to find. I diagnosed myself with NSAID induced LUFS after finding articles in medical journals. I'd been taking a strong NSAID for a few years for an autoimmune joint disorder and had tried to get pregnant with regular cycles for 2 years with no luck. All tests came back normal and showed ovulation but I had cysts every cycle, some that developed into large cysts and ruptured. I stopped taking the NSAID on my own and got pregnant the very next cycle. Unfortunately that pregnancy ended at 12 weeks but we'll try again in a month or so. I was amazed that such common drugs as NSAIDs can cause LUFS (temporary and reversible in those cases) but there is so little information given to women about it.
    Thanks again for sharing your story! I hope the hits continue so more people are aware of LUFS, temporary or not!

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  6. AprilA, I think this is my problem, too. I've been taking aspirin for migraines for a few months now. I get regular hormone profiles/cycles, but no ovulation. It's driving me crazy. I had eliminated all of the 'fun' out of my lifestyle, (alcohol, coffee, etc), but still was not ovulating. The only thing I didn't change was the aspirin. But the more I read about LUFS, the more it makes sense to me because that's the only thing left that might impact it. I take about 2 - 4 aspirin a day for chronic migraine. I hope quitting the aspirin helps.

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  7. Update:A woman on the yahoo forum reported that Dr. Hilgers is now trying neupogen for LUFS. He is having great success. Although I was not the one who suggested it to him, I am glad that I found this article and spoke to AV who brought it to his attention. This is exciting news.

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  8. Wow! This is such great information! I am not sure how I missed this post. I am currently a PPVI patient with LUFS. I am in recovery after my laparotomy two weeks ago but look forward to starting treatment with my next cycle. Thank you for all of this detail.

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  9. Just wondering how much pycnogenol and co-enzyme Q10 should be taken is it once a day??
    I have normal BBT charts also and on CD11 an ultrasound sound showed a dominant follicle, using OPK's also but I never ovulated when tested for progesterone 7dpo

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  10. Thanks for all the info on LUFS! I too have 7-9 days of Fertile CM every cycle and I use Yellow Stamps. My Peak is usually between Day 20-23. I am wondering if I have LUFS because of my late Peak Days and long mucus patch. I always thought that I ovulated because of my BBT charts and positive OPKs. This cycle on Clomid I had a 23mm follicle on CD 13 but I peaked only on CD 17 and got a BBT spike on CD 18. I was wondering if my follicle could have turned into a unruptured cyst. I am thinking of asking my NaPro dr for an U/S series.

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  11. Wow congratulation Great Post KEEP IT UP
    With regards
    Sammy
    Home Check Ovulation Kit
    You can find me by searching on Google HOME CHECK or check my profile

    ReplyDelete
  12. Hi there
    Thank you for all the interesting info. Do any of you know if NaProDoctors are good with immunological issues? I think I might have those because I've been in NaPro for quite a while and still not pregnant all though things look pretty okay with my cycles now. I found some big shot IVF/immunology doctor in NY and thought about contacting him but honestly I'd much rather be helped by NaPro than a usual IVF doctor.
    Amber

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  13. Great Post KEEP IT UP
    I've been using OVULATION PREDICTOR for a long time and I still get butterflies when that little smiley shows his face. :) I got one from the internet by searching on Google HOME CHECK OVULATION TEST KIT it was great!

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  14. Is there any Treatement center in India, could you please sugest me whom to contact?

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  15. you can try ayurveda treatment also in india
    dr.lintojohn@yahoo.in

    ReplyDelete
  16. I just got diagnosed with LUFS with Napro... This post is super helpful!

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  17. Also, are there things one can do natually to help with LUFS? Special diet? This is all new ground for me. I would love to talk more about this because some of the descritpions above are out of my understanding like what is "LH" and a "LH" surge?

    Personally, I started with PCOS and Endo. I had surgery with Napro June 2012. I was on clomid and hcg injections for like 5 months after. Everything is all back to normal with great cycles but nothing was happening. 2 weeks ago I was told I have LUFS, they are not sure if it is a side effect because of the Clomid or if this is just me. This coming cycle I am doing no meds to see... Any help you got for me would be great!

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    1. How did they diagnose you with LUFS? Did you get US done every month after the surgery or just two weeks ago?
      You can get LUFS once in awhile or have it all the time like me. So I agree that you need to try a few cycles without the medication to see if that caused it or not. THe HCG injections made it worse for me. They caused the follicle to continue to grow.
      Ovulation is like dominoes. Your body produces FSH to stimulate the follicle to grow. As the follicle grows it creates estrogen. Once the estrogen level gets high enough it stimulates LH. LH is Luteinizing hormone. A LH surge is when your LH is at its highest level and is supposed to make your follicle pop. THat is why it can be misleading if a DR just tests your hormones. All the hormones could be in order, but the actual follicle may not pop. As for a natural remedy, I don't have anything specific that I found.

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    2. Thanks for your answers. The Dr. said to go without anything for awhile to see what is going on. I am just hoping that it was a side effect of the medicine... Thanks again :)

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  18. OMG - I am so glad to have found this! I have been banging my head off a brick wall for years, DH and I are about to start IVF. When we began trying I had strange opk results - 28 day cycle, but no real positive opk until around day 22, giving me a very short luteal phase. Day 21 progesterone tests would come back 'equivocal'. After months of waiting, we finally got referred to a fertility clinic and their ultrasounds showed that although I have a normal cycle of 28 days, with fertile signs mid-cycle and a mature follicle by day 15, the follicle simply does not rupture. By the time it does, there's no fertile mucus left and then my period turns up 6-7 days later as my progesterone levels aren't high enough, even if by some miracle the egg was fertilised. Triggering with HCG solves the issue for me, but to add a complication, I have a blocked left tube (which wasn't diagnosed until after three triggered cycles, all ovulating on the left...) and a 'lazy' right ovary which only does it's stuff once every 8-10 cycles. So i said, "Can I have clomid to stimulate ovulation, making it more likely I'll ovulate on the right, then triggering so the follicle ruptures?" The answer? "No." They aren't interested in helping me get around the issues, even though one of the doctors we've seen said it would probably work - so we're jumping to IVF. But it took me so long to be taken seriously - I knew there was something wrong with my opk's, my charts, everything, but even when ultrasounds confirmed it it was MONTHS before anyone took me seriously! They'd see a mature follicle on day 15 and say, "Come back tomorrow, it will have ruptured," and I'd be like, "No it won't. Not until next week," and no one would believe me - not until it had happened six times in a row. But you're right, there's just no interest in this as a condition or a phenomenon, since you can just get round it with IVF. I'd much rather try some clomid/pregnyl cycles first (it's way cheaper too) but they're not interested.
    Good luck in your quest!

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  19. Anonymous from April 18, 2013, before you do IVF, try to find a NaProTECHNOLOGY doc near you at www.fertilitycare.org (click on "Find a Medical Consultant" on the Left bar) first. Medical NaPro docs will definitely try clomid for you if it's appropriate, and if they find more problems which the REs may have missed, they might refer you to a Surgical NaPro doc who will address those too. Don't give up on finding a supportive doc! They're out there! God bless!

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  20. Simone what dose did you use for Lupron as a ovulation triger? Thank you in advance for your answer.

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    1. Hello,
      I know it goes by weight and I do not know the formula. I weigh 130 pounds. I got one bottle that came with a 14 day kit and and I used the dose that the box also said was for one day. So it was not a lot. I had a blood test the next day and my LH was very high around 40.

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  21. If it is not too personal to ask, do you still ovulate on your own or do you need Lupron occasionally?

    My Napro doctor is using Neupogen right now to help me ovulate. So far it is not working. It supposed to raise the white cell count etc.

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    1. Hello,
      It seems that my LUFS is a permanent thing. Most of the time I need lupron or I won't ovulate. The neupogen is supposed to soften the follicle so you still need to use a trigger with it. The lupron is a trigger on its own.

      Delete
  22. Omg I think I may have this. Almost-monthly cysts that get huge (big enough to make me tender externally) and burst a week before my period. The timing is what made me wonder if my eggs weren't bursting at "ovulation" but rather growing to huge size and painfully bursting a week later. Unfortunately, the treatment for this painful bursting is high powered NSAID. But I only take them as needed when it bursts, and had the cysts for over a year before I finally got meds, so I'm sure NSAIDS aren't the "cause" for me. I'm just starting tests, but I've been trying and charting for 6 years, so I feel that I know my symptoms pretty darn well.

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  23. Just done TVS, and the gynea said that MAYBE i got LUFS. Normal cycle, ovulation sickness 13/14 days before next menstrual cycle, +ve OPK when i felt the sickness..sooo sad. we waited for 1 and half year after married with full of hope. And now we know the possible cause. Will follow up by D13 with gynea. if the size of the egg (is it the size of egg? 2.8cm. still confuse..) is still the same, might be +ve for LUFS..one and only in my family with the difficulty to get baby..sobsss!!wish me luck mommies!!

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  24. I just wanted to say thank you for your amazing site. I too have LUFs and I'm trying to get to the bottom of it. Like you it was only NaPro that found it. In fact I am going to do a cycle of IVF as nothing else has seemed to work - including herbs and tocotrienol vitamin E which is being used with some success by a doctor in Nigeria the NaPro network (not tried Lupron as my NaPro consultant is not qualified to prescribe it).

    However even with IVF having LUFs is not easy to treat as the presence of the cysts into the next cycle means you can't start stimulation until they have gone... We'll see what happens but for now a massive thank you for your incredible research, and very clear communication of what you have found, its a real gift to those of us on this path. I hope that the baby you long for reaches you soon.

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  26. The book 'Making Babies' by Sami David says the following about LUFS:

    “Chinese medicine considers LUFS a result of stagnation. Stuck women are the type most likely to have it.
    Taking an herbal formula containing Zao Jiao Ci (gleditsia spine) for about five days during the follicular phase is very effective in helping the follicle rupture. In my (Jill’s) experience, this herb is nearly miraculous in getting follicles to pop (and in reducing ovarian cysts, a process that amounts to much the same thing). Conventional medicine doesn’t have anything like it. Acupuncture is also useful in prompting ovulation.”

    Excerpt From: Jill Blakeway. “Making Babies.” iBooks.

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    1. This sounds very interesting ! Should this be taken as a tea ? Or capsules ? Should it be taken on its own or combined with other herbs ? If combined, combined with what ?

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  27. you have no idea how happy i am to read this write-up... i've done my own research on LUFS, ovarian drilling, and more. if i am not pregnant this cycle, my doctor will do the ovarian drilling. if i still am unsuccessful because of LUFS, i will most certainly find a Napro doctor. THANK YOU AND CONGRATS!!!

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  28. Thanks so much for writing this and sharing your research! I've been struggling with this for years. Sounds like I'm on the right track, working with my Napro doc. Hoping for painless cycles!

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