Newbie...need advice please

spotsanddots · February 2017

Hi everyone.

I am new to posting online, though I have been reading through this site for awhile.

A little background, I am 35, DH is 34. We are on our 10th cycle TTC. Given my age, after 7 cycles we made an appointment with our OBGYN. He completed a Saline HSG. Tubes were clear, nothing noted abnormal. He referred us to see an endocrinologist.

Last month we made our appointment with the RE. During this time he looked over our HSG, asked me about 50 questions, then completed an internal ultrasound. I was on CD 13, the observed I had 1 follicle mature and noted I would ovulate within 12 hours. He also quipped, I see some endometriosis in your uterus (it was like someone saying, "Oh it's sunny today").

When we were finished, he took us back into his office and laid out our options: 1. Wait and hope that it happens naturally. 2. IUI with oral meds (clomid). 3. IUI with injections. 4. IVF. He noted on our own, I had <1% chance of achieving pregnancy.

Of course, being Type A, my mind flies into overdrive, and I am asking a million questions:
Why less than 1%?
Will the endometriosis affect achieving pregnancy?
Which option would be the best for us?
And the most important...what next?

He took time to review the options, the pros, the cons, what our insurance would and would not cover. Etc. It felt good having some answers, some options. At the same time, that <1% chance felt like a punch in the gut.

After some discussion, DH and I decide on IUI, as our insurance will cover that, but it will not cover IVF. I inquire if injections is the best route, clomid, natural? Doc says, relax (I want to throat punch everyone who tells me to "relax"), we have to wait for blood work on CD 3, once we get the results from labs, he promises to call me and go over options...make a plan....ok great...so we wait.

Blood work is completed, my phone rings...it's the medical assistant, not the doc. She reports all levels are in the "normal" range (nothing about this feels normal, ya know?). Ok...great...now what??? Doc said he would call with a plan.
She laughs. Oh that doc, he's a fibber!

Wait. What?

She informs me that he doesn't call with results, med assistants do. Then from there we wait, call back on CD 1, we will make an appointment for you to come in and sit down with doc to hash out a plan.

Did I mention I am Type A?

Why do we wait until then? Why not make a plan now? I am asking a million questions on the phone. She goes from bubbly and friendly to annoyed with me (lots of sighing and mmmmmhmmming). Basically my question is: Is there a need to wait until CD 1 to create a "plan"? She tells me that's just how it's done. I ask why, she hasn't an answer.

Ok, I press on. Why would we wait until then when ALL infertility meds have to be preapproved through my insurance. And my insurance is SLLLLLLLLLOOOOOOWWWWWEEEEEERRRRRR than the darn TWW. Why not lay out a plan now, get everything preapproved before CD 1 so when it rolls around we can be ready???

She sighs (for the 13th time) and tells me, "if it will make you feel better, I will schedule you with the doctor to discuss your options again."

Ugh. No. I know my options, what I need is a plan! I ask her if she understands what I am saying, she replies, "mmmmhmmm". I ask if I make sense (because seriously, this whole thing has me feeling straight out nuts), she tells me, "yep, makes total sense to be proactive."

Sigh.

So I make the appointment (for tomorrow) to go in and talk with the doctor. Meanwhile, I am googling for answers as to why they would wait until CD 1 (because she obviously had no clue). The answer is: baseline ultrasound. On CD 1 the doc does a baseline ultrasound to count how many potential eggs we will be working with.

Ok, that makes sense.

So, my questions for you ladies...should I keep the appointment with my doctor tomorrow so we can hash out a plan, or should I cancel and wait until CD 1?

Thanks in advance, I know this was long to read. I just feel so...I don't know...lost?

JamieH2000 · February 2017

The waiting is the worst! One thing I have learned through this journey is that it's really all up to us. The doctors give options but a lot of this is based on what we want to do. So if you and your husband have decided which option you want to do, you probably don't need the appt. the nurses could go ahead and start submitting the pre approvals now too. But it never hurts to talk to the doctor too. If you don't want to make the trip in, maybe they could do a phone consult? Then you can get your questions answered too

spotsanddots · February 2017

Thanks for responding. I really don't mind going to the appointment, I suppose I'm afraid of being made out to be silly or crazy for wanting to lay out a plan.

mandasd · February 2017

Due to your age, I would skip the clomid and just go IUI with injectables. I would try one round and see how you stimulate. If you indeed have endometriosis, you'll likely have to do IVF. But I would at least try a round of IUI. Keep us posted!

laurad75 · February 2017

Yep. Waiting. TTC is all about waiting whether it's natural, medicated, treatment, etc. and waiting for CD 1 is the usual routine.

bpietronicco · February 2017

I had to wait until the start of a cycle and I spent that cycle getting all the baseline testing and then came up with a plan as we approached the next cycle- on cycle day 1 I called and they scheduled me for day 2 or 3 labs and from there the nurse would call in the afternoon with the next steps. I feel very blessed with my RE, but it is definitely a lot of waiting.

Polythene Pam · February 2017

It's so much waiting. I was on a 4 month waitlist to even get into my clinic, then he wanted more testing, then a month before he could see me to go over said testing. If it were me I'd never turn down a chance to actually talk to the doc! Just go with a list of questions so you fully know what the plan is. Also it seems like while they know best, we may have to be an advocate too. my RE and I didn't agree on treatment at first (he's known to be conservative) so I'm glad I spoke up on what my husband and I wanted to do. Best of luck!

spotsanddots · February 2017

Thanks for replying.
IUI with injections is the route I was leaning towards too.

I had my labs drawn on Day 3 already (this cycle), checked FSH, AMH, etc, all good. It took 3 days to get the AMH because it had to be sent to Boston? I dunno. That's what our nurse said took the longest. So, by the time the labs were in, I was on CD 5, and according to her it was too late to start this cycle.

I get that. I just wanted to lay out a plan so when AF shows up we are ready to roll. You know? I'm trying to prevent any hang ups (primarily with my insurance company).

I will keep you all posted. Again, many thanks.

spotsanddots · February 2017

Polythene Pam said:

It's so much waiting. I was on a 4 month waitlist to even get into my clinic, then he wanted more testing, then a month before he could see me to go over said testing. If it were me I'd never turn down a chance to actually talk to the doc! Just go with a list of questions so you fully know what the plan is. Also it seems like while they know best, we may have to be an advocate too. my RE and I didn't agree on treatment at first (he's known to be conservative) so I'm glad I spoke up on what my husband and I wanted to do. Best of luck!

Grrr!!! That is so long to wait! I guess I am very lucky, I can typically get in by the next day at my RE; but you are right, I have to advocate for myself. I am going to go and get a plan put in place. I am going to tell him how I feel!
Thanks! And fingers crossed this morning.

funkykey · February 2017

Welcome @spotsanddots - I'm kind of Type A too, so I understand where you're coming from.

I hope you find support on these boards.

Obviously, different people chose different treatment approaches to IF, but I think it's safe to say that the older you are, the more aggressive you may want to be, especially I'd you'd like to have more than one child. If I were 25 I might not jump to IVF so quickly, but for us now, if our next 2 IUIs fail, we will move to IVF shortly thereafter. As you probably know, though IVF has the highest success rates, it is also - by far - the most invasive, expensive treatment option... That's why we didn't jump to it first.

With our IUIs, we're not doing injections, though sometimes I wish we were. I ovulate fine and OPKs work for me, even though they are so tricky and stressful.

Also, as pp have said, the waiting is the worst. It's endless- from TWW to being benched for a cyst. I went to a baby shower this weekend for a friend who started trying way after me, and all I could think was: "already?!" It's very hard not to feel that life is passing you by.

Best of luck to you! Keep on doing your research- knowledge is power!

cakeforbreakfast · February 2017

I'd be wary of a doctor who makes claims about your having less than 1% chance of becoming pregnant before he had even done the FSH, AMH, or follicle count through cycle monitoring.

spotsanddots · February 2017

@cakeforbreakfast I know. When I inquired about that number he said it's due to my age and a narrow cervical opening.

The next closest RE is 1.5 hours away. DH and I have decided to attempt a few IUIs with this doctor, but if we have to move on to IVF (I'm praying we don't), I will go to another RE.

adirat · February 2017

Hi @spotsanddots -- I realize I am a little late to this but I wanted to flag one other thing for you. If you have endometriosis large enough to see on an ultrasound, inside your uterus, you should follow up about whether the doctor thinks that is concerning for pregnancy outcomes. *TW - loss* Having intrauterine endometriosis or fibroids can prevent a baby from growing safely to full term. You may not be in this situation, but if your doctor saw the endometriosis and never said anything about risks, you should make sure to ask. It would be awful to get to 30 weeks and discover there's a problem then.

mandmplus1 · February 2017

IUI is also covered by my insurance and like you I was so worried about all the pre-approvals with the insurance needed because even though it's covered everything needed approved in advance. The IUI needed to be approved on my medical insurance and I used injectibles and that needed pre approval through my prescription plan. I proactively contacted my medical and prescription insurance to get the necessary paperwork sent to the doctor and thankfully they filled it out and sent it in. If your insurance is anything like mine then waiting until CD1 to start any pre approval process would make me nervous and would most likely result in a delay until the next cycle because of how long it took. Maybe you can get the ball rolling?

manders85-2 · February 2017

Hi @spotsanddots and welcome! So I am a fellow type-A person. Worse yet, my job is healthcare redesigning. I literally get paid to help practices and clinics become more efficient and patient-friendly. So needless to say, all of the 'mistakes' and crappy service these places provide bothers me not only personally but professionally too.
Your message and recounting of your initial experience and the questions you had just made me cringe and partially out of extreme empathy because I've had those same things happen to me too. I think you need to advocate for yourself by asking good questions, going in early for an appt with the doc before Day 1 for the plan, questions, get insurance approval etc, so you feel more at ease and in the know.
You know, one of my struggles as a type-A person is wondering if my 'worrying' or over-planning is causing undue stress and maybe that's why we're having trouble? It's such an awful and unfair thought to have because it makes me feel responsible and guilty for our current infertility struggles and does nothing to actually combat my stress. I don't bring that up to suggest this is, in fact, the problem. Please don't get me wrong. I bring this up because I think for type-Aers, having questions and getting answers is what does make us calm and less stressed and can help us let go more. My personal method with my RE is advocating for ourselves and then once I do and they answer our questions/concerns, I try to sit back and let their plan take over. I do the research, I message-board, don't get me wrong, but I do try to say to myself, over and over, "i'm in good hands, I trust them." Of course trusting them is completely personal preference for you and you should go elsewhere if you can't get to that 'trusting place.' So listen to yourself and choose the best Doctor/Nurse/RE office that makes you feel like you can take your hands off the wheel just a little bit. This process is too hard, too time-consuming, too-expensive to not feel like you're in at least decent hands.
As for advocating for yourself, I agree with @JamieH2000 that it's up to us. Doctors may diagnose the meds or have the data or tell us our diagnosis, but for the plan, we should advocate for what we want and then leave the treatment up to them. That's my two cents.
Oh and by the way, I'm speaking as someone who had a nurse 'mess up' when I came in for my second U/S after clomid. My second said my follies were too small, they gave me estrace. My follicles stopped growing and we had to cancel the cycle. Turns out afterwards they said they shouldn't have given estrace for anything under 16 mm. One Nurse I worked with said, "oh no, we shouldn't have done that. Have they talked to you about compensation?!" I was so relieved/angry to find that out because we had spent 1K out of pocket the previous month for nothing, just 8 days of clomid and 6 u/s. (no infertility coverage for my insurance)

Anyway, I advocated for myself, wrote them a letter (so it'd be in writing) and sent on the patient portal. I did get a response back from the nurse the following Monday who said she spoke to my RE and we got two U/S comp'd for our trouble. So you never know, your advocating can work for you and hopefully this round works with our two free U/S!

spotsanddots · February 2017

Thanks ladies so much for responding!
@Manders85...yes! This is exactly how I feel! You nailed it.

So I had my meeting my with RE yesterday. He flabbergasted me.

We sit down to review my blood work and he notes that my FSH is 8.93, which he grades as acceptable. He states he would worry if it was over 10.

Then he reviews my AMH at 3.88 categorizing it in the excellent range. He notes that because the AMH is so good it will counterbalance the slightly elevated FSH.

Ok, I ask...so now what?

He tells me oral letrazole.

Wait...what? That wasn't even a med he reviewed during our consult. He reviewed clomid plus IUI or injections plus IUI. Now he mentions letrazole.

He says to call on CD 1 and come in for an US. They will write a script for the letrazole, and I'll take it on CD 5-9. Then, I have the option of either using OPKs and BD the old fashioned way, OR I can come on on CD 14 and trigger, then BD the old fashioned way.

I know I looked like he knocked me down. So I asked about IUI. He said not necessary yet...

Again...wait...what? Last month you told me I had less than 1% without IUI or IVF.

He responds that was before he looked at my labs, and my labs plus DHs amazing sperm analysis means we need to backtrack and start with meds with good old fashioned baby making. He notes that will the meds my chances of conception are about 12%. If after 2 months we still need his services, we will go the IUI route.

Did I mention I will be 36 in 2 months?

I left there stunned. On the very first meeting he painted a picture for us of IUI and IVF and noted this were our options. I was fully prepared for IUI. Now we've slammed on the brakes.

I am VERY VERY VERY happy that he is pleased with my levels. That's exciting. I just wish that he would have waited to lay down a plan or quote numbers until AFTER he collected my blood work. Hearing that my labs changed his plans threw me for a loop.

In regards to the endo, I asked about it. He waived it off. Called it insignificant and not to worry.

So, DH and I decided we will give it 2 rounds with meds. If at the end of the 2 cycles we aren't happy, I'll switch docs and make the hour and half drive.

cakeforbreakfast · February 2017

Yeah, another doc is a good idea because he never should have given you odds of conception without blood work results.
As for your numbers, they are lovely

. Have you used OPKs yet? And for him to still be giving odds is ridiculous, and 12% at that is just plain strange.

liljoy-2 · February 2017

Yeah, RE gave me odds of 1pct before the blood work. Turns out he was right, we have lots of issues after 2IVFs

spotsanddots · February 2017

@cakeforbreakfast Yes, I've used OPKs and temped for the last 7 cycles.

@bestofjoy I'm very sorry you're going through that.

[Deleted User] · February 2017

OP - we are in a different situation as far as specifics, but I will second the, "second opinion," PPs. We left our first specialist pretty devastated...and the second specialist feeling much more optimistic! Not to mention, with a bit of a different <i>DIAGNOSIS</i>, even. I mean, really? So it never hurts. ;) would be worth it to feel 100% confident in your gameplan going forward. (((Hugs)))

Annie034 · February 2017

I agree on the second opinion. We spent almost a year with our RE who told us we would need to do IVF/ICSI. She referred us to a urologist and when we came back told us donor sperm was our only option. We saw another doctor and his first question was "Why haven't you done IVF yet?". We started with him and had our egg retrieval yesterday with good fertilization numbers. I know we still have a long road ahead of us - but we wouldn't even be here had we not gotten a second opinion.

LoveDontCostAThing · February 2017

Hey, I'm sorry that your dr. is being frustrating...and I think he is! I agree about getting another opinion. I also agree that it might be worth looking more into the endo. Endo can prevent/ make implantation more difficult (depending where it is.) I had a few polyps...one dr. said polyps don't matter...and another dr. (in the same practice by the way) said I needed them removed, and made me freeze my embryos to have a laparoscopy...so I did...they said the one polyp was in an area where implantation occurs. Also, they said they found "a small patch of endo" and removed it...and "cleaned up my uterus"...lol. But if they can see the endo on the ultrasound (they couldn't see mine because it was small, but they could see the polyps)...I would suggest getting another opinion. My feeling was that I could have not listened to the second dr. about the laparoscopy, but I wanted to do everything I possibly could to make this work. Sorry for the long rant!! Good luck

spotsanddots · February 2017

Thanks ladies!
Sometimes I wonder if I'm being neurotic, it's nice to hear my concerns are valid.

DH and I have researched other doctors, we are prepared to seek a second opinion.

LoveDontCostAThing · February 2017

I am totally neurotic lol...I drive my husband nuts will all my googling...we said we should name out future child "Google." I also bring a list of questions anytime I meet with the dr. to make the most of the meeting. I think all concerns are valid and should be taken seriously...this is a big deal, and if not covered by insurance, a huge expense. I do like my one dr.'s approach (the one who convinced my to get the polyps removed and laparoscopy.) She said that she cannot treat patients unless she has a full picture and that a laparoscopy is a full picture. You can't see everything or even much from an ultrasound. Feel free to message me if you want details about the procedure!

rainbowwishes5 · February 2017

Welcome! I totally get the idea of NEEDING a plan!!!! Type A here too. It's a curse! Lol good luck with everything

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