So much has been going on lately since I started seeing my new doctor, let’s just call him Dr. B. He does specialize in Endometriosis. He does believe in many immune illnesses (though not NK cells) and did some pretty thorough testing.
Just as a recap, here’s what we know:
– I DEFINITELY have PCOS (was a maybe before) and some ovulation issues. The majority of the time I have regular cycles and it looks like I ovulate but my eggs are probably immature or don’t actually get spit out which is why trying on our own probably never works
– My cardiovascular results were starting to get out of whack from the PCOS
– My Endometriosis grew back like wildfire from my lap exactly 2 years ago (though my last doc only lasers and he does laser, cauterization and excision depending on what he finds, which I didn’t know anything about before and now I know more and know it’s good.)
– I DEFINITELY have antiphospholipid antibodies and they are high and I would definitely need to be on Lovenox/ Heparin/ whatevs (which was a “maybe”/ borderline in the past and conservative docs were unwilling to try) if I were ever to get pregnant
– I may have Adenomyosis but it they think it’s not probable any more
– I had some fibroids which were removed
– I am deficient in Vitamin D. 6.5 years of treatment, no one bothered to check.
– MTHFR (but the ‘not bad’ type. I should choose my folic acid wisely and be on baby aspirin at minimum.)
So I met with primary care doctor and my Endometriosis doctor post lap.
The good news is that they don’t think my cardiovascular risks are that bad at all. We will watch them and I need to make sure I get Omega 3’s and exercise but not dire.
I definitely need to be on once daily baby aspirin. For the rest of my life. For my clotting disorders. If I ever get pregnant, I immediately need to be put on Heparin. And I need to be on Vitamin D supplement. And I also need to start on Metformin which should help with my weight loss and probably my cycles too. (Plus, I was on it before and if helped my egg quality immensely.)
So the Endometriosis…he said it was just everywhere very very messy. And long term, I really might be looking at hysterectomy. As its going to keep coming back. I can try with diet/ weight loss/ exercise to keep it at bay (and maybe herbs stuff) but there’s no guarantees with any of it. Even excision which people swear by with Endo., I saw some research on it and it still comes back in up to 40% of cases within 5 years and maybe more after that… and I will likely not hit menopause until close to 50 which is 15 years away.
Which leaves me with two options on how to handle my cramps/ bleeding, etc…
1) Try and get pregnant again as I am the most fertile I can possibly be after a lap. If I get pregnant it will help me feel better potentially. If I don’t, I might need another laproscopy. The added bonus is being on fertility drugs can help my cycles stay less wonky from the PCOS.
2) go on a drug to put me in menopause which is very risky given my clotting disorders and the fact I have osteoporosis in my family (it causes bone loss.)
So I think we might TTC again after all which I know, I know, is not what I truly desire or what I’ve yo yoed deciding about it before.
I am only going to do Letrazole(Femara, I did get pregnant on it… twice.) so even if I don’t get pregnant- which frankly I’m not super hopeful of- it still won’t be bad for me. Besides which we may as well do it while we wait to move ahead with adoption this summer. It doesn’t change anything there for me, it’s not one or the other. If it doesn’t work, we move on to adoption. The worst case is I end up with another lap or having to try the risky meds, which may happen regardless.
It’s just really strange but my knee jerk reaction is “they all say to me they think I can get pregnant but it doesn’t feel true.” This is the third doc who said “I honestly 100% believe you can get pregnant.” It’s just hard to believe after our history. But when they keep saying it maybe its true? He’s also the 3rd doc to say they don’t think IVF is necessary for my case. Even though the last two did miss some things, why do they all seem so convinced?
I asked “why is this any different?” And they said I’ve never been treated for EVERYTHING at the same time. I never did any IUI or IVF post lap when my uterus was clear. When I have taken ovarian drugs I did get pregnant but didn’t stay so which could have been one of three things- 1) clotting disorder for which I wasn’t being treated 2) endometriosis as it hasn’t been diagnosed back then- causing issues with implantation or 3) my PCOS was not allowing me to actually ovulate as I wasn’t on metformin/ correct meds. I’ve taken care if 1, 2, and 3 before but never at the same time. For example- my perfect IVF cycle #3 great embryos, got pregnant, ectopic- a common occurrence when you have endo that has not been cleaned out of you. Or my first pregnancy went along great until 6 weeks and then stopped and I saw what passed and it was a very normal looking embryo. Maybe that was the clotting disorder?
So in a way maybe they are right. Maybe it’s that I haven’t had anyone treat all of this stuff at the same time?
It’s just hard for me to believe… After all I’ve been through that it kind of is “bad luck” in a way. But it’s not just that, it’s docs who didn’t look hard enough either. Or scared docs who discussed me taking heparin before years ago and then decided against it.
It will be interesting to try again as I am not excited or believing in it, so I do think my stress will be lower. I think there’s a chance but not a high one. But I do think its now or never. And at worst it doesn’t work and we adopt on the same timeline we were thinking anyways. (And doing it this way costs me just copays, luckily since we are on a budget and I don’t want to take any $ away from a second adoption.)
It’s been a lot to think about and Pete and I talked a lot and are on board. I feel bad as one of the primary reasons I want it to work is cost. I just feel like I am kicked in the stomach thinking about another $25,000+ adoption. Not that it’s not worth it, believe me. But it’s just so much $ that could be used to make our lives better economically, better schools, debt free, etc. But if we must, we must. And if it were free, there would be no choice in my heart of hearts, I would go with adoption.
So wish me luck. I am keeping this all very secret. I don’t want to tell people or make it a big deal. Because it really might end up being nothing but something we try before I move on with my uterus and decide to do with it… I want to just keep it more low key this time around. Even if the unlikely pregnancy did happen, I am not sure I could bear everyone I know asking my questions about it. I am pretty chill about it actually as I feel it’s up to fate and accepted- finally- that this is all out of my control. What will be, will be. And as long as I don’t have to chose between TTC and adoption or spend tons of money, it doesn’t really seem to hurt anything. It may even help my symptoms in a weird way. It’s up to the fates to decide how a child will come to us. And unlike our first 7 years of trying, I know now that it’s not impossible to become parents even when it may feel like it.
(Ps- the stats, in a case like ours… don’t bear out on IVF being any more likely to work than IUI. On a given month, statistically IVF may be more likely to work, but if we are patient, not more likely overall. Plus any $ we would spend on an IVF would make adoption impossible. Pluss.. emotionally I just cannot do another IVF. The docs I’ve seen have felt my body reacts very poorly to IVF as they need to put me on minimal stims and get so few eggs as my body goes haywire that it may just not be worth it. My current doc thinks I don’t need it. Imagine that?)