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  1. #1
    Poenym
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    Endo and ovarian function

    Hi everyone,

    I'm trying to piece this all together, including the stuff I've read on here...
    I've known I have endometriosis for about 6 years, and had a lap in October to remove 4 endometriomas, was given a stage IV diagnosis -which, from what I'm reading, might actually be good news (though the knife-stabbing pain in my right ovary for hours last night that left me curled up and whimpering, not so much).

    My IF issues are compounded by the fact that I'm a lesbian, so anything I do is already assisted. I've had two IUIs - one pre-surgery, one post. Since my surgery, my cycles have gotten *very* short (post surgery cycles: 34 days, 14 days, 23 days but controlled by BCP, 15 days, 19 days, 16 days).

    So, this past cycle we monitored the cycle... and I had a 14mm follicle on day 4, which I'm told is too early. It grew 11mm in two days, which I'm told is too fast. Two more grew from 12 to 22 and 25 in one day (also too fast), leaving me with a 22, 25, and 31 at day 7 of my cycle... and my LH was only 7ish at that point. We triggered, did an IUI, and I had a 7 day luteal phase.

    Argh.

    So, asking the questions of my RE, I'm getting "your ovarian function doesn't look good. Your FSH levels are fine, but your estrogen is too high too early in your cycle, and the follicles are growing too early and too fast, then getting too large without an LH surge. I don't think you're ovulating on your own at all. I am not sure you have quality eggs." Asking for more, she essentially says "the endometriosis has caused damage..." I asked about the luteal phase and was just told "we'll give you progesterone next cycle."

    I feel like there's stuff missing here, but I'm not really sure what to ask for. I get the immunology side of endometriosis (at least some), but also know that's less likely my problem, given stage IV. At this point, we need four more IUI cycles before insurance will cover IVF, and she says it's not going to work without monitoring/trigger (another $600 a cycle out of pocket, on top of the 1K we were already spending for sperm and the IUI itself). My tubes aren't blocked - we've tested for that.

    I've read a good chunk of what people have said. Should I be asking my PCP for a referral to an RI? Should I be asking me RE for immunological testing? Is there something that will help improve my ovarian function/quality of eggs, given that there's reason to believe endo eggs aren't so good?

    I'd love to hear what has worked for other people. At this point I'm slated for one more natural cycle, then a clomid cycle, then two FSH cycles, then IVF (which insurance will then cover). I'm paying for monitoring, so I would love to know if there's something more I should be asking them to monitor...

    Then I'd love to hear more about longer term solutions to endo pain. My lap was in October, and I felt better until now - so 4 months - and this period has been the worst in years. That said, I cannot take ibuprofen while TTC, so that contributes, but I was nearly ready to go to the ER last night, I was in that much pain. I started having pain in my upper abdomen during my period about a year ago - that went away with the lap, but is back again now. Makes eating difficult. This is so frustrating...

    Thanks for any BTDT, advice, etc.


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  3. #2
    BC-Faith32
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    Poenym-- Hi and welcome to Fertile Thoughts. I am so sorry you are going through such an ordeal in TTC. You have definitely come to the right spot. In addition, I urge you to join one of the IUI boards and the support and information there will be immense. One thing I did not notice in your post is what is your age? That is an important factor in TTC and egg quality. Also, I am not familiar with insurance that will make you do x amounts of IUI before funding IVF, but I am sure that is the requirement for some insurance. Including monitoring fees, donor fees, etc. how much OOP will you be for 1 IUI? and then multiply by 4, I am wondering if you may be better off considering paying for an IVF instead. Before that, though, I absolutely recommend getting a second opinion. Have someone else look to see if all the appropriate labs have been drawn to determine your hormone levels when it comes to egg reserve, etc. I, personally, would not proceed with another IUI before having a second opinion. Do you mind me asking what state you live in? Fertility Authority (our sister company) can set you up with a second opinion as a complimentary service. Please let me know your thoughts and also your age, etc.

    I look forward to hearing from you soon
    Me-35 (endo 2002), DH-41 (perfect)
    DS (adopted 2004)
    Many IUI- bfn

    IVF#1-4 (2 bfn's 2 chemical's)
    IVF#5 13 ret, 12 mat, 11 fert, 8 biopsy'd = 6 normal frozen for FET
    May 13 FET-BFP- m/c @ 6 weeks
    Sept 13- FET in Oct. cancelled due to surprise BFP!!
    EDD 5/25/2014 (c-section sch. 5/8/14) It's a BOY


  4. #3
    Poenym
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    I'm 34, and we have really no reason to believe I have egg reserve issues (FSH was 1.9 on day 4 last cycle). Fees per cycle right now with everything included is about 1500 - so 4 cycles is still about half of the cost of IVF (and one of them might work!).

    I live in Massachusetts, and I've been pretty happy with my doctor up until last cycle (but she was out of town for most of the cycle, so that's a big part of why I'm feeling that way right now). I'm not terribly good at figuring out how to ask for second opinions, or even sure I really want one... this clinic is really well respected and my OBGYN wanted me to see them for the endo years ago before we were even thinking of starting a family (before I even met my wife!) - she says they're the people to see. Also not sure how to get insurance to pay for that second opinion - and at this point I need them to pay for everything I can get them to!

    That said, my bloodwork and ultrasound for day 4 THIS cycle were VERY different than day 4 last cycle. My estradiol was 24 (rather than around 300!). I had about 10 follies on each side, the leading were 8mm and 9mm, normal for day 4. So... maybe ovarian function is coming back rather than going away...


  5. #4
    BC-Faith32
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    That is a great E2 level for day 4 and your antral follicle count is good too! I think this IUI has a good chance then. Please look over on our infertility boards for an IUI cycle group that will be the same month as yours. Best of luck to you!
    Me-35 (endo 2002), DH-41 (perfect)
    DS (adopted 2004)
    Many IUI- bfn

    IVF#1-4 (2 bfn's 2 chemical's)
    IVF#5 13 ret, 12 mat, 11 fert, 8 biopsy'd = 6 normal frozen for FET
    May 13 FET-BFP- m/c @ 6 weeks
    Sept 13- FET in Oct. cancelled due to surprise BFP!!
    EDD 5/25/2014 (c-section sch. 5/8/14) It's a BOY


  6. #5
    Poenym
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    Quote Originally Posted by BC-Faith32 View Post
    That is a great E2 level for day 4 and your antral follicle count is good too! I think this IUI has a good chance then. Please look over on our infertility boards for an IUI cycle group that will be the same month as yours. Best of luck to you!
    Thanks, Faith. It was very different from what I expected. Last cycle was the first cycle we've monitored, but the fourth short one, so I figured we just saw what has been happening and I expected the pattern would continue. I bet my doc thinks the same way. I was happily surprised at how this cycle looks so far. Trying really hard NOT to get all hopeful and instead to just believe that my ovarian function may be improving. Maybe it took them longer than usual to heal from the lap...


  7. #6
    Poenym
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    Hi everyone,

    Just an update - had my 3rd u/s this morning and things STILL look normal for this cycle. I'm not on any meds, so we're looking for one follicle - two days ago it looked like the right ovary was in the lead at around 11 (compared to 10.5 on the left). Today it looks like the left won - which is great, since my right ovary has a lot more problems with endo. Everything's still normal...

    I guess what I'm trying to pass on is to not give up... my doc told me ovarian function was shot from the endo, and then the very next cycle things look normal. I'm wondering if they just took longer than expected to heal from October's lap... but either way, there's hope!


  8. #7
    Doodliegirl
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    Hi there - I wish had some answers for you... I just wanted to give some support. I am also a lesbian with endo and had surgery in January after 5 failed IUI's. Since then I had one failed IVF and am trying for #2 now. I actually have the opposite problem from you in that I am responding too slowly to stims- after 12 days I only have 2 follicles... In any case, I wish you the best of luck! From what I have read the progesterone should help you!


  9. #8
    Poenym
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    Thankds, Doodliegirl. I hope in the end there were more follicles and a good retrieval - let us know?

    I thought I'd update this thread for me as well, given that there have been significant changes since the original (no, no success yet).

    Last cycle was normal, unmedicated until the trigger, one healthy follicle, triggered on day 14, used crinone and had a 13 day luteal phase. Hormone levels looked normal throughout, follicle growth was slow and steady. I wonder if part of why it didn't work is that I ovulated on the same side as my endometrioma (the one we didn't get all of in the surgery, and it is definitely still there). I had pain all cycle - I think my right ovary has healed to my side wall, so whenever anything is going on over there (follicle, corpus luteum, etc.) I get pain. My thighs also ached all cycle, likely for the same reason.

    This cycle I took 100mg of clomid on days 3-7. I responded really well - I'm on day 12 now and have a 23.5, 20.5, 19.5, and 14.5. Luckily, only the top three there count, so my doc won't cancel the cycle. My hormone levels have remained normal throughout the cycle. I didn't get a baseline FSH level this cycle, but the highest it ever went when we were testing was 6.73 (on day 8, first day we tested it) so I think my FSH levels are still really fine. In fact, I got the most growth on the day my FSH came back only 3.3 (it had been 5.57 the day before). My E2 is normal too. My LH is, if anything, a little low - they calculated what my surge would be this cycle based on day 3 and day 7 levels and came up with 10.2. (I was doing a clinical trial related to LH surges, so they were extra careful about it this time around). 10.2 is so low! This explains why I wasn't getting positive OPKs. I have yet to ask my doctor if that's TOO low or indicates a problem, but given that at this point we are monitoring and using a trigger every month, I think it's not an issue.

    Oh, and my last AF was not that painful, either. Go figure.

    Anyway - I talked to my doc about what she had said about my ovaries being in decline due to the endo. I asked if it's possible they were just still healing, and she says yes, it's possible, there could have been some inflammation getting things messed up. Here I am, 12 days into my cycle, looking at the second normal one in a row, trying to do everything right to help these eggs along... anyway, IUI #4 is Wednesday, then starting crinone again.

    Wish me luck - but for those wondering about endo and ovarian function, at this point mine seem to be functioning much better.


  10. #9
    Poenym
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    Cool Update

    I thought I'd update this thread, since I know when I search on stuff like this and read other people's threads, I really wish this kind of update existed.

    <pregnancy mentioned>
    This cycle worked. =)

    Two cycles after my doctor gives me doom and gloom about ovarian function, I have two normal cycles in a row, the second with clomid, and the second one worked. She was talking to me about maybe needing to consider egg donation, and here I am.

    For those who want more details:
    -At 12dpo, I had a luteal phase dip in my basal, then it went up the next two days quite a bit. I also had the tiniest amount of spotting - would've missed it if I weren't paying so close attention. And my symptoms started that day - started to have sore breasts, got a little more sensitive to smells.

    -At 13dpo, I had a negative HPT.

    -At 14dpo, I had a positive blood serum test (low, though - 25).

    -At 15dpo, I had mild nausea ALL day.

    -At 16dpo, my blood serum test was 77. Next one is 19dpo (tomorrow).

    Also, I know I have an endometrioma on my right ovary, and that it's around 5cm, or at least was during my follicle scans this cycle. My doctor said we need to keep an eye on it - but that was before the positive test, so I need to check in with her on what that means now that I'm actually pregnant. (I'm actually pregnant! I cannot believe it...). My lead follicle was on that side (23.5) as was my smallest (14.5). The other two were on the other side - 21.5 and 19.5. Sizes are larger than usual due to clomid - and those are sizes on day of trigger.

    Also, fyi, this was my fourth try. My first try was pre-surgery, and after that try we discovered 4 endlometriomas, so that likely would've made it very unlikely. My second was at the end of those really short cycles, had only a 7 day luteal phase, so was obviously going to be a bust. My third was fine, and this one too. So, really, I've had only two good tries. And, as I required donor sperm, these were the ONLY tries.

    So - pregnancy in only 4 tries, in only 2 really viable tries, with stage IV endometriosis and an endometrioma on an ovary that still produced follicles.

    It can happen.

    Good luck, everyone.


  11. #10
    BC-Faith32
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    Amazing news!!! I am sooo happy for you
    Me-35 (endo 2002), DH-41 (perfect)
    DS (adopted 2004)
    Many IUI- bfn

    IVF#1-4 (2 bfn's 2 chemical's)
    IVF#5 13 ret, 12 mat, 11 fert, 8 biopsy'd = 6 normal frozen for FET
    May 13 FET-BFP- m/c @ 6 weeks
    Sept 13- FET in Oct. cancelled due to surprise BFP!!
    EDD 5/25/2014 (c-section sch. 5/8/14) It's a BOY


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