So, we just got back from K’s ultrasound appointment and well, we got interesting news. She does have 2 kidneys, one is a pelvic kidney that is sitting next to her right ovary. Her other ovary is hidden behind a 3 cm fibroid. The MRI confirmed a unicornuate uterus. The RE basically said that retrieving eggs from her ovaries would be very risky because of the placement of her kidney. The risk of perforating her kidney or a ureter would be much higher for her. She described the symptoms of a perforated ureter as “urine leaking out of your vagina.” The RE also said “don’t worry it can be fixed, we just insert a stint and in a few months everything is back to normal!” At this point, my internal expression was similar to this:
The RE went on to say that one option for retrieval would be to go in laparoscopically but since this is not covered by insurance and we are talking general anesthesia, that’s not happening. The RE felt that going in vaginally and abdominally both would not work because of her anatomy and the fibroid. She felt that even with removing the fibroid the risk of perforating her ureter or her kidney would be too high so neither of those are good options. She said that if K was dead set on carrying a pregnancy then she would recommend donor eggs because of all of the risks involved retrieving hers. Basically, her eggs are not retrievable.
So, we have closed the book on using K’s eggs or uterus on our journey to make a baby. She has always been very firmly against the idea of being pregnant which given all of this feels quite serendipitous, as none of her parts are very serviceable for making or carrying babies.
That leaves my antiquated parts. We talked a little about a timeline and what will happen next. On CD 1 I will repeat an ultrasound and more labs then begin birth control and 21 days of testosterone gel. The RE said this would hopefully increase my follicle count and the number of mature high quality eggs retrieved. I will also do human growth hormone once a follicle of 10mm is seen on ultrasound. And she recommended a micro FLARE protocol to hopefully get a better result at retrieval.
Fingers crossed this one works. I can’t even think about how I will feel if it doesn’t so I’m just going to press forward with the hope that our results will be much better this time around. I have about a month to figure out where we will get the rest of the money for the cycle. I’m pretty sure we can do it without putting anything on the credit cards, but I suppose that’s always an option.
K is getting her post-clomid challenge ultrasound tomorrow morning. Her arms are seriously bruised from all of the blood draws and the IV for the MRI contrast. They had to draw off of a vein on the front of her *bicep*. :O I didn’t even know that was possible. Her MRI showed that she has 2 kidneys which is a relief. One is in the wrong spot, but hey, at least it’s there doing it’s job (presumably). No confirmation yet on the unicornuate uterus or news on other findings if any from the MRI.
We will know more about how her body responds to stims and whether there are more follicles in there that can’t be seen after her ultrasound tomorrow and hopefully we can form some sort of tentative plan. I’m getting antsy to try again. I should be starting a new cycle in about 10 days so if we are moving forward with retrieving my eggs I want to hurry and get things into place so I don’t miss this cycle.
Anywho, hopefully we get some good news and a plan tomorrow morning. Fingers crossed.
As you know, K and I have been pursuing multiple fertility options (another ER for me, RIVF, and donor embryos) at this point in an effort to get more data about which option will offer us the best chance for success. We really thought K would have better fertility than I do because of age and family history. It turns out that her situation is far more complex than my ovaries past their prime and a dusty ol’ uterus.
Previously, we discovered that K had an AFC of 1 as well as a fibroid. This information was complicated when her AMH came back at 2.6… conflicting results weren’t giving us the data we were after. The RE suggested that K pursue a clomid challenge since imaging was difficult with the fibroid blocking the view of her ovary and the clomid challenge would help us learn more about how she might respond to stims. The saline ultrasound showed that she most likely had a unicornuate uterus but the RE couldn’t be 100% sure because of the fibroid. She mentioned at that time that she may only have one kidney due to the UU deformity.
My SO just went in this week to have the initial ultrasound and bloodwork in order to start the clomid challenge. This time, the RE felt that the kidney on the other side was in the wrong place, calling it a “pelvic kidney.” Because of all of these issues K now has to go get a MRI of her abdomen to see what the heck is going on in there.
In the meantime her labs came back and her calcium level is high. This concerned me immediately because she doesn’t take calcium supplements. I googled and the top hit was for hyperparathyroidism. Ok, not good but treatable. Then I started to wonder if her unique anatomy might have something to do with the levels and it turns out that hypercalcemia (high blood calcium) can be associated with kidney defects. Soooooooooo… this is turning out to be quite the rabbit hole, y’all. I’m feeling worried for her because this is a lot of news and given the calcium issues, probably even more poking and prodding is in her future as I’m sure there will be follow ups to figure out why her calcium is high.
I’m sorta used to the medicalized life after having a chronic illness and now fertility shenanigans. She on the other hand is the type who never goes to the doctor or has health problems. I remember when that was me and how distressing it was when it all changed. This was NOT what we expected when we considered trying reciprocal at ALL (then again, pretty much nothing on this journey has been what we expected). At this point, I think it’s pretty clear that reciprocal is out at least for a good long while until she sorts out all of these health problems we inadvertently uncovered—not that I even care, I just want her to be ok. I feel sad for her that she has to go through all of this.
K is moving forward with the clomid challenge so maybe we will get lucky and finally have some good news. Regardless I think the next step is most likely egg retrieval for me if we can make the timing work. Though we feel more confident about the possibility of donor embryos I don’t think either of us are ready to close the chapter yet on making our own baby. I’m still trying to work up the courage to face possibly having another disappointing retrieval but for now I’m just taking my supplements and trying not to feel too anxious and worried about it.
Has anyone else dealt with a unicornuate uterus and accompanying complications?
Being here alone has given me a lot of time to reflect. K and I have had many talks about how this about my grandfather news affects our future plans. I grew up in a highly dysfunctional family. It took me a lot of years to get my head on straight and a lot of extra work just to get to level ground with my peers. My 20’s were spent busting my ass working jobs while attending school with very little, if any family support. All that to say: I struggled. Massively. I think the stress of it all is what literally gave me MS. Looking back I don’t know how I did it, especially after being diagnosed during grad school.
My struggle to get ahead, to level the playing field came with a price. I missed out on important things with my family like spending time with them, being with them when they needed support and getting closure for myself over my aunt’s and grandmother’s passing. I don’t know what will happen with my grandfather. I hope he is the ridiculously small percentage of people who will beat his cancer and go on living. But I know that even if he does, his cancer marks the end of an era. His life won’t be the same and mine won’t either. I’m finally in a place in my life where I can be here with him and give him the support he needs as well as get the closure I need with whatever happens.
As such, K and I have talked about moving here. Her new job (offer accepted today!) can be fully remote. We can rent our house for now. Just this morning I was reflecting on how grateful I am to have K, who is willing to drop everything and support me in being here for my grandfather. I am lucky. I love her so much.
I don’t know where that leaves us with fertility treatments. IVF was so emotional and ultimately ended in disappointment and heartbreak, I’m not sure I can go through that again right now. I want to. I’m not getting any younger and my egg quality is not getting any better. I had hoped that if we were going to pursue it that we could move forward with egg retrieval this next cycle. That way, the egg retrieval won’t interfere with spending time with him over the summer. We need about $7000 before we can do another cycle though, so I’m just not sure. We had discussed embryo adoption but had tabled that discussion somewhat as we both felt that we should try one more retrieval first. I am not sure I could handle having no embryos at the end of the retrieval though which is a completely plausible outcome.
It’s been a day of reflection, in part because I keep waking up at 5 am– still clearly on east coast time! But the things that stand out to me the most are that I am glad to be here. I am so thankful to have K and I’m more open to embryo adoption instead of pursuing another retrieval. Clarity is good.
K got her AMH back about a week ago and just like everything else, the results have left us feeling confused. Her AMH was 2.6. Go figure. One visible follicle (apparently, I was wrong about her having 2 in my last update–she only had one) and her AMH is 2.6. I don’t know what that means in terms of whether reciprocal is a good option. I don’t think we will pursue it though. K still seems on the fence and I don’t want her to feel pushed into anything. We are just going to go and talk to our RE about what the best plan is for us given all of the factors.
In other news, I just found out that my grandpa has cancer. He had an entire lung removed about 2 months ago. They recently did a PET scan and found more cancer in his other lung. For various reasons, I just found out about all of this today. Thinking about planning IVF feels completely irrelevant at this point. So who knows. It’s hard not to think that I just should give up on having a baby. Seems like nothing is falling into place. In fact, things are falling out of place, support is eroding. Time and money and emotions are now actively focused somewhere else. For the record I am not sad about that. I am sad that my child, if there ever is one will not ever know this man. I’m sad that my grandpa will never know his great grandchild, if there ever is one. I am sad that I am losing the one of the last pillars of support I had in my family.
From the information I have gathered about the situation, he has somewhere between 2 and 12 months left to live. So I am trying to sort out a leave to go be with him for as much of that as possible. Luckily I work in the schools and have the summers off. Unluckily, K and I just bought spendy flights to Taiwan for June since we had no idea that he was even sick. We can’t get a refund and I’m pretty sure that even if we did go we wouldn’t enjoy it. It’s just been a really shitty day. And I’m so not in the headspace for our appointment tomorrow. And ironically enough, we really *did* install rain gutters today. Must have somehow known the shit storm was coming.
****If anyone still reads this, you are a saint. I know I literally haven’t had anything good to say in months. I have no explanation except failing at getting pregnant for over a year really sucks, especially when other things are falling apart around you too. Thanks for reading my Daria-like version of TTC.
K and I chose to table further talk of reciprocal after she said she didn’t want to go through with it last week because of the fibroid they found previously and the RE not being sure that the eggs on her left ovary could even be retrieved. I feel like I’ve been walking a fine line between being objective about our chances and trying to focus our discussion on our best chances while giving K enough space to make decisions independently, while also giving myself space to grieve her decision without burdening her with my feelings. It’s been really hard. I want whatever decision we come to to feel right to both of us. And I want to be sure that K knows I respect her decision no matter what. The situation has been complex to say the least.
A few days ago, K texted me that she had made an appointment for a saline ultrasound with our local RE for today (Friday). It was a surprise since we had not had much discussion about getting a second opinion since last week. We got home from the appointment just a little bit ago. I truly do not think there has been a single step of this process that has not had some crazy twist or turn. Today was of course, no exception. To recap, K is 33. She has a family history of excellent fertility with her mom and her sister both giving birth at 40 after becoming pregnant with no intervention or planning at all.
Guess what y’all: her AFC was 2. She is 33 and has 2 follicles. If you don’t know what this means I’ll explain. Average AFC for a woman her age is 10-20. A low AFC is problematic because stim meds for IVF can’t recruit follicles that aren’t already there. So, her response to stim meds is likely poor. Her AMH has been drawn but we won’t get the results until next week. The RE said she was “concerned about her fertility.” And called the lack of antral follicles a “yellow flag.” She also has a unicornate uterus and possibly no fallopian tube on the left. Basically, we are probably better off doing more retrievals with my eggs, since K basically doesn’t have any.
It honestly feels like we just aren’t supposed to have a kid. This is so ludicrous.
Well, K and I have gone back and forth about whether we should transfer or not and I don’t feel good about it at all. I need something to shift but I don’t know what. I think overall I’m hopeless about this process. The bad news just keeps coming. Basically, I’m old and my eggs are bad. I asked the RE what his thoughts were on our chances of success getting pregnant and he thought we have about a 10% chance each cycle. 10 fucking percent. I’m not technically infertile but with those kind of odds I may as well be.
K and I discussed reciprocal and the short of it is she isn’t willing. Logically I respect her decision but emotionally, that choice could not make me feel any more alone in this process. Or that the struggle, the discomfort and the loss of dignity that I have experienced over the last year mean nothing. If we had endless funds that we could throw at multiple egg retrieval cycles then ok, sure, let’s keep going and see how much we can push my ovaries.
I don’t enjoy this process. I would not choose it if there was another way but I would go through retrievals as many times as needed if the money was there. It’s not. We have money for one more retrieval. We need the sure thing and that’s using K’s eggs. But she is not comfortable so what can I do? And so I am sitting in the living room fighting back more tears while she is in the bedroom trying to get me to come watch a movie with her but I can’t be upset and I can’t ask for her support. So right now I am avoiding her instead. This process feels like ever intensifying levels of heartbreak.