New here: kind of

estherjvb

I introduced myself on here back in November I think with ttc for over a year.  At the time we had no diagnosis and no indicator of a potential problem other than my sisters struggles with miscarriage.  I had what we thought was a large hemorrhagic cyst on my right ovary but it was supposedly not a factor.  I felt awkward continuing to post and respond when I didn’t seem to have any real issue other than time and we were seeing an RE in January.

im back now with a diagnosis and seeking support and advice, I feel like now I have a reason/right to be here, if that makes sense, and before I was an interloper.  So...here we go and I understand if you want to give me the boot so to speak for silence.

Diagnosis:  the cyst is an Endometrioma and I have Endometriosis and a hydrosalpinx on my right Fallopian tube.  She did not indicate what stage though considering the size of the cyst along with the hydrosalpinx I understand it to be stage 4.  She recommended me to a surgeon and wants to remove the right Fallopian tube along with the cyst, which could involve removing the entire ovary depending on how it goes.  For treatment she suggests IVF as I will have only one Fallopian tube, and potentially only one ovary.  RE indicated left tube looked fine in the HSG and left ovary is healthy with a normal ovarian reserve,  but left tube may not function, the cilia may not work, due to endometriosis (any thoughts on this?). DH of course seems to have super sperm so he has no problems and is in the 80th percentile on motility and quantity.  Morphology is normal 😑.  

Just reaching out to to see if anyone had any experience with hydrosalpinx and endometriosis?  RE indicated my odds at natural conception are very low, I’m a mess right now and feel like it’s over since we don’t have ivf coverage and thus it’s not an option. 

mirabelle33

@estherjvb Welcome back There's no need to apologize for stepping away until you had a more concrete diagnosis. Board participation fluctuates and in fact I'm currently taking a break from participating, but happened to see this and thought I would comment since I think I'm the only one around with a similar diagnosis.

First, I'm so sorry that you are facing what you are facing. It is scary and overwhelming to get that diagnosis so take whatever time you need to process it all. I'm going to run through my story and then I have a follow-up question for you.

I had an HSG done in September of 2017 that came back completely normal. We proceeded to do 4 rounds of Clomid and then 3 rounds of injectables + trigger + TI with my OB. Needless to say, all of those cycles ended in BFN. During the ultrasound for the last cycle, there was a small cyst (12mm) on my right ovary that was suspected to be endometriosis. This was the first mention of endometriosis since starting ttc. We decided to stop treatment and go for a pelvic MRI that showed the cyst on the right had disappeared but there was a new one on the left of the same size that *might* be endometriosis. There was also a section of a ligament that *might* have endometriosis as well. So basically the results were inconclusive, but did not show evidence of any severe endo. We also decided to switch to an RE at this point and based on the results, she was suspicious of endo, but could not confirm it without surgery. We went through more tests with her and my AMH came back very, very low, meaning I have Diminished Ovarian Reserve (DOR). She gave us two options at that point: surgery to look for and "correct" any endo and then to try IUI or go straight to IVF. She said that for IVF you do not need the tubes (she never said this directly, but I suspect she thinks my tubes are damaged by the endo). We chose to go straight to IVF. The testing we had was at the end of May and for several reasons we had to wait to start IVF until the end of September. During the time that we were waiting, the cyst on my left ovary grew significantly and at the baseline ultrasound for our first IVF cycle, it measured 45mm. My doctor then confirmed endometriosis and said she was "sure" I had it. However, she also didn't see any reason to cancel IVF and continued with the cycle. It ultimately didn't work, but I don't necessarily think it was because of the Endometrioma (we managed to make 1 good (looking) quality embryo at Day 3, which was considered a success with my DOR). At our follow-up appointment we asked about surgery to deal with the cyst and she did not think it was a good option. The surgery risks damaging the ovary even more and would likely remove some of my remaining eggs. She thought we should do another IVF cycle as soon as possible, which we're currently in the middle of (and the Endometrioma is still there at 45mm). If this cycles fails, we'll probably bring up the surgery question again, but I don't know if her answer will change.

So in my case, we were able to avoid surgery and go straight to IVF and the Endometrioma doesn't seem to be causing any major issues. I don't get many eggs from my left ovary, but who's to say whether it's because of the cyst or my low ovarian reserve (or both). I know you said that IVF isn't an option for you, but if that ever changes, the Endometrioma alone should not harm your potential for success. Otherwise, it sounds like surgery to remove the endo from your tubes so that you can try an IUI is your best option. I cannot speak to the hydrosalpinx, but I assume that definitely requires surgery? The tube may or may not need to be removed, but if it is removed, you can definitely still get pregnant with only one (healthy) tube, though it may take a bit longer.

Ok, so my question is, have you had your AMH tested? You mentioned your doctor said your ovarian reserve was normal in the left ovary, but I'm assuming that's based on a count of your follicles at the beginning of a cycle (AFC) and not on your AMH level (this doesn't differentiate between ovaries)? If you haven't already, I would definitely encourage you to have your AMH tested before agreeing to let a surgeon cut in to your ovary (or potentially both). Like I said, this can do more damage and remove some of your remaining ovarian reserve. I believe there are newer options out there like burning or draining the cyst that are less damaging, but you would need to do your homework and make sure you chose a good surgeon who specializes in endo. It doesn't sound right to me that they would have to remove the ovary just because of the Endometrioma, but again I don't know about hydrosalpinx so maybe that makes it more complicated. I would ask your RE some follow-up questions about all of this and also see what she thinks about doing IUI after surgery. One other thing you might ask about is an MRI since the HSG doesn't show everything (like I said mine was completely normal). I have a friend who had an MRI that showed very severe endo and she did have surgery that was successful in removing it, including from her ovaries, although she hasn't become pregnant yet (she also has PCOS).

Anyway, I hope this was helpful and not too overwhelming. I know it's hard, but try not to worry and don't be afraid to ask your doctor more questions and to have questions for the surgeon as well. Good luck and feel free to DM me at any time if you need to. Xo

ETA: add something

chiblackhawkie

Welcome back! Sorry to hear about your struggles.

I have endometriosis - a mild case, but they were able to scrape most of it off during a laparoscopy surgery when they were in there to remove a cyst. It'll obviously grow back, but we're hopeful before then to get pregnant through IUI or, if needed, IVF.

The struggle is real, and you should never feel bad about posting/lurking. We're all hurting and just want to support each other through this difficult path we've all been put on.

sincethelastday

Just want to say welcome back, @estherjvb, and so sorry to hear about this newish diagnosis. I wish I could say something more helpful, but just wanted to repeat that you were very welcome here before and are now as well! I felt a very similar way when I first joined because I hadn’t started treatment yet, but as the ladies on here at the time reassured me (looking at you @mirabelle33 *wink*) regardless of where we all are with our IF journey, this is the place to be and I’m glad you’ve joined us again!

inthewoods23

@estherjvb I think I joined this group shortly before DH had an appointment with a urologist so we didn't know what was going on but I really enjoyed the support in that uncertain time for us. 🙂

estherjvb

I’m not sure if she did an AMH.  I need to ask as somehow in all the craziness I got my hubbies lab work back but not mine.  The ovarian reserve she cited was from a blood test though.  I do know that, and she said she counted ten healthy follicles on the left with this last ultrasound.  She made an offhand comment about my reserve being normal, used the number 34,  it I do t remember in what context, and that that was in the left side alone since the right wasn’t functioning.  I have no idea how they can tell this from blood?!

In the initial ultrasound she indicated the cyst was large, 5cm, right on the edge of needing surgical removal, but that if surgery was needed to correct anything else they saw in the HSG they may as well remove it while in there.  I have had the cyst for over a year now, it fluctuates in size, at its largest 7cm and now 5.  The potential of removing the ovary was due to the size of the cyst.  She indicated she thought it was an Endometrioma and not hemmoraghic since it hadn’t resolved.  I guess I expected endometriosis to have more lesions.  My uterus looks perfectly normal with a normal lining

she told me they remove the Fallopian tube with hydrosalpinx since there is evidence that the fluid in the tube leaks toxins into the uterus and prevents implantation.  That many women conceive with one ovary after removal, but that my chances were lower since the Endo may negatively impact the lefts functioning.  I’m was hopeful that as there seem to be no other adhesions besides the cyst that my left would be able to manage alone.

mirabelle33

@estherjvb Typically there are 3 tests to determine ovarian reserve:

1) AFC - a count of the resting follicles on your ovaries at the beginning of your cycle (day 2-5)

2) AMH - a blood test that can be done at any time in your cycle

3) FSH - also a blood test, but must be done at the beginning of your cycle (day 2-5)

You really need all three to give an accurate picture of your ovarian reserve. It sounds like your doctor made the comment based on your AFC on the left ovary and what I'm guessing was your FSH level. The problem with FSH is that it fluctuates from cycle to cycle so you can't depend on it alone. The first time I had it done it was in the normal range and the second time it was just under what is considered "high." When you get your lab results back, check and see if she tested your AMH. If not, I would recommend asking to have it done in order to have the complete picture.

The thing about endo is that there isn't really a test that can see it all. The HSG and even an MRI won't show everything, which is why surgery is usually recommended and the only real way to diagnosis it with certainty. The HSG is very good for showing a hydrosalpinx, but I don't think it will tell you much about the extent of your endo. This is probably why she made the comment about removing what they find when they go in to correct the hydrosalpinx. It sounds like surgery is appropriate in your case, but I would still recommend having a complete picture of your ovarian reserve before doing it. There's always reason to hope and we've had women graduate that had surgery for endo and there are many women on TB that have conceived with just one tube.

ETA: the reason I push so hard for AMH is that I had a doctor tell me that my ovarian reserve was fine based on my FSH alone (it came back normal when she tested it). She also refused to test my AMH (probably because she knew my AFC was not good, but I was too naive at the time to realize this). When I finally had my AMH tested, it was very, very, very low. I don't necessarily think you will have the same experience as me and your AFC is higher in one ovary than mine is in two. I just would hate for you to go through a surgery where they are removing something from an ovary or even the ovary itself without having the full picture of your ovarian reserve

estherjvb

Thanks for the info.  And this exactly why I posted; I want to make sure I’m not making poor choices out of ignorance.  I’m guessing the test was actually the AMH due to what you said as the blood was drawn on the first consult appointment that was scheduled without any consideration of timing in my cycle.  I will check to make sure though (should have while I was there, sigh).    I am nervous about surgery for all the reasons you mentioned, but there is a part of me relieved to have her suggest it.  The cyst had been incredibly painful for over a year.  It would be nice to be done with the constant pain.  On top of the constant period like ache on the right a new pain that feels like a really bad muscle cramp on my right side has and if I move or bend a certain way it tugs and stabs sharply.  At least my pain tolerance has built up....

ive been doing more reading on hydrosalpinx though and am getting my hopes up, probably irrationally so, that the HSG could have helped.  There have been cases where the fluid in the HSG cleared out the tube and the hydrosalpinx resolved to have some conceive naturally 6 months after the test before surgery to remove it.  Sigh...just an excuse to track, and hope, and act irrational some more really.

thanks for the feedback and the help.  I really appreciate it.  Best wishes on the current round of IVF.

mirabelle33

@estherjvb That would be great if it's already been tested and was in a normal range. I'll keep my fingers crossed that this is the case! I think most REs do include it in their initial round of testing. I'm so sorry to hear you're in so much pain from the cyst. I only get twinges of pain from mine every now and then, but I'm more "aware" of it during certain times of the month or just before and after the egg retrieval during IVF. There are definitely times when I wish they would recommend surgery to drain it at least and to see what else is going on with the endo, but so far they keep saying it won't make any difference (and it always has the possibility of coming back). I have heard of the HSG clearing out blocked tubes and leading to pregnancy shortly thereafter. I don't know about resolving a hydrosalpinx, but that would be amazing if it worked! What is your next step? Will you meet with a surgeon? I imagine they will be able to answer more of your questions and hopefully give you some more reassurance! Xo

estherjvb

Probably just getting my hopes up, but we have to have something right?  I do worry my insurance will refuse the surgery claiming it’s not medically necessary.

I have my surgery consultation scheduled for February 21st.  I’m hoping to schedule surgery over spring break so I don’t have to take time off work.  We'll see what happens.  

How far far are you in your current IVF cycle?  I’ll admit I’m fairly ignorant of the timing and process having not undergone it.  Just read a lot about how difficult the hormones and injections are to cope with.  Not to mention the ridiculous cost.  One of my students is from Japan and her mother told me IVF in Japan is $6000 a round 😳.  Too bad the plane ticket would eat up the cost difference ☹️

estherjvb

Thanks for the support 

mirabelle33

I'll be thinking about you on the 21st and hope it all goes well! Don't be afraid to have a list of questions with you to refer to and also a place to write down the answers. Good luck!!

Don't worry - I don't think most people have any idea what happens in an IVF cycle unless they're involved with it themselves. So far we're hanging in there and making our way through it step by step. You never really know if you'll make it to the next step until you do!

estherjvb

Got test results back, she did test AMH, it was at 3.56ng/ml.  I’m 33, so it seems this is on the normal to high range.  High enough to indicate PCOS?  She said it was normal, didn’t indicate any thing else, but maybe trying not to hit me with too much at once...

inthewoods23

@estherjvb My AMH was around 4.5 and they claimed that as normal. I'm not sure where the line is that indicates PCOS because I thought anything above 4 was!

sincethelastday

@estherjvb -I’m kinda confused with the whole AMH thing and when it’s considered too high. My result was 5.7 and my RE claimed that it was all good and normal. I’ve tried googling for a concrete answer and haven’t really found one. Either way, that sounds positive that your RE doesn’t seem concerned with that number! 

inthewoods23

@sincethelastday one source I looked at, or a video I watched, it said that AMH is above 20 or something when you're in your teens and even higher when you're a child. Maybe between 3-4 is average for ages 20-40 or something so by being a little above 4 that's kind of... better?

sincethelastday

@inthewoods23 - here’s hoping! Thanks for the info!