April 30- Second Opinion Numero Dos

Went to my other RE appointment today for my 2nd second opinion (so technically it was a THIRD opinion). And I absolutely LOVED him! The crazy thing is of all the reviews I read on him, about half of them were negative stating that he has terrible bedside manner and a God complex. But a friend of mine did IVF through him and swore by him and my TCM recommended him, too, so I thought I'd give him a shot. I am truly glad I did because he was the nicest one yet! 

From the moment my appointment started, Dr. Trolice. was extremely compassionate and thorough. He already had all my paperwork, so he knew why I was there. I gave him a synopsis of what I've been through the past three months and ended with sharing my latest blood test results. The best part was when I told him that I've been going to a TCM for acupuncture and herbs, he not only approved, he also actually goes to the same doctor!! He said, "Dr. Fu is a magician. And I say that with nothing but respect. Anytime I have a pain I go to her and she sticks needles in me and the pain goes away. I usually jump up and say, 'how do you DO that??', but she just tells me to relax. I don't understand how it works, but it does." I asked if it could be the reason why my hormone levels have changed so drastically. He couldn't confirm or deny because there is no medical evidence that it was the cause, but absolutely condoned me going. He spoke of a patient he had that went through two rounds of IVF with no success. The only thing she did differently the third try was go to Dr. Fu for herbs and acupuncture and had success the third try. Again, he couldn't say that was the reason, but he also couldn't say it wasn't. So that made me feel at ease with Dr. T. and that we were on the same wavelength.

Next came the hard part. He was straight with me and said with me not getting my period at all, it doesn't look good. That without it, there are no treatment options. I mentioned the suggestion Dr. B. had the day before with birth control followed by Femera (but didn't tell him I saw a diff Dr the day before). He said fertility drugs wouldn't work on me because they do what my brain is already doing, which is send a signal to my ovaries to produce an egg. We already know my brain is sending the signal because of the high FSH. He went on to discuss other options... you know.... the ever-so-gut-wrenching adoption and donor egg speech. Said that there will come a time where if I still haven't had a period down the road that my husband and I will need to make a decision. Because right now we are in limbo. Waiting. Waiting to see what happens. If my body will work again. But at some point if nothing has changes then it's no longer waiting, it's just wasting time and we'll need to make a decision on how we want to try for a family with the other options. That was certainly a bitter pill to swallow. He said he can see that I am a very mature, level-headed girl that will research and exhaust every possibility. (Boy does he have me pegged!) And that most women come in and start sobbing after two words and cry the whole time without listening. Funny as soon as he said that I felt like I wanted to cry. But I DID that. I've DONE that. It's actually been quite sometime since I've done it again. Of course then I started thinking about why I'm not still breaking down now and I came to this conclusion: For one, I still have my appointment with Dr. Check at the Cooper Institute in Jersey next month. So I feel like it's spare hope to fall back on. And secondly, to cry and sob and let it all out, to me is like saying it's over. That there's no hope. Well I'm not there yet. I haven't given up. And maybe I'm being stubborn and unrealistic but hell, what do I have to lose?? Certainly not the function of my ovaries! Ha! :-/ Yeah...

He ended the talk by suggesting an ultrasound, making sure I was on board with doing one. Absofuckinglutely. So we switched rooms and proceeded with the ultrasound. Endometrial Lining was about 6 mm (which beats the one from three months ago that registered at 2mm) On one ovary he said I had three or four follicles. Ok. Hey! That's better than none! Then he moved to the other side and said, "Well it looks like there's some activity in this one... three follicles... and it looks like you ovulated." ?!?! He immediately wanted me to get my progesterone checked to find out, and that they could do in the office. I asked what that means and if it changes anything. He said if I truly did ovulate that I should get my period soon and explained that even if I did in fact ovulate, it doesn't mean it will happen again or become a regular thing. It COULD happen but he doesn't want me to get my hopes up too high. So I had my blood drawn and was told I'd hear back within a few hours.

Around 5:30 I received an email personally from Dr. T. This is what he wrote:
"Your progesterone was 1.85 which means you are nearing ovulation or have ovulated and nearing your period. Levels below 1 are inconsistent with ovulation and above 3 are consistent with ovulation. In between is equivocal. But I believe this demonstrates a resumption of ovulation at least in the past cycle. The future is variable as we discussed. If you do not have a period then come in this Friday for another blood progesterone level."

Aaaaargh. So frustrating!!! Of COURSE my numbers have to be all complicated by being in between. Could have ovulated or could be soon. I feel like so many things have been "this or that." ...Could be hot flashes or it could be hormones coming back. ...Could be estrogen increasing or could be from the DHEA. I just want some kind of definitive answer on something, ya know?!? Grrrrr. But ok... I guess I can try to take it as a good thing. It "looks" like I "may" have ovulated. All I can do is wait for Aunt Flo, but I'm certainly not holding my breath...

**By the way... anyone in the Orlando area (or who doesn't mind traveling) and needs to see an AMAZING RE, I highly recommend Dr. Trolice at Fertilty CARE. State of the Art facility, incredible Dr with tons of awards and they even offer FREE IVF with all subsequent IVF treatments if the first one doesn't take! Definitely worth checking out! http://www.myfertilitycare.com/**

April 29- Second Opinion Appt. #1

This morning I had my first official second opinion appointment. I went in with all my previous test results and a list of questions to ask and get answered. I was the first person in there and had all my paperwork filled out already. Waited about 40 min to see the Dr. but saw the Nurse Practitioner while I was waiting. 

Dr. B. seemed like a nice guy. When he first sat down he asked me for a little bit of a background as to what's been going on. I filled him in and mentioned that I have been going to a TCM for acupuncture and herbs and he immediately jumped in to tell me he doesn't believe in "that stuff." (Which truly baffles me because while Western Med. Drs might not understand Eastern Medicine, it IS how they practice medicine on the other side of the world so how can they can just completely discredit it makes no sense to me!). So anyway, that put me off right away, but I was still going to hear all he had to say. Right after he stated his disbelief in herbs and acupuncture, I mentioned that it's what I've been doing for the past 3 months since my diagnosis and then asked if I he looked at my recent lab results. He said not yet and then flipped to that page. His eyes flew open and he said, "wow. That's quite a jump! I mean really, that's something else. I can't imagine what would have caused such a drastic change." And instantly followed it with, "..but it's definitely not from the herbs and acupuncture. If there was something that truly worked like that, we'd all be using it in fertility clinics." Yeah okay... So he has no idea what would cause the change yet he's definitely sure it wasn't the herbs! LOL. Anyway, he said my recent numbers aren't terribly bad, but that my E2 being higher it artificially suppresses the FSH.

He went over the options with me (which I am honestly just delighted that I now have potential options!) of procedures I could try. He said since insurance doesn't covert infertility in FL, he wouldn't recommend starting with IVF unless we def want to jump right in with the big guns. He suggested we first try to get my body to have a period by taking a month of birth control pills. Then, when if stop the pills I would call them the day I start my bleed and come in on day 3 and start Femera. He said then I could decide if I wanted to try naturally or do an IUI. That naturally I'd have a 10-15% chance of conceiving and the IUI bumps it up to 20% (at $600 a pop). I didn't realize an IUI only gives you a 20% chance. Now it makes sense why I always see so many signatures in the forum that say "failed IUI."

Through the rest of the talk, he kept mentioning how his office has an 80% success rate, which I know isn't true because no place has that high of a success rate, so I'm not sure how he was counting. He also kept throwing in that he is a Christian doctor, which for me isn't exactly a selling point. Religious beliefs don't make or break a doctor. A good RE is a good RE.

So I thanked him and went on my way. As I said, he was nice, but not what I was looking for. But that's ok... I still have other options to check out...

April 26- Second Opinion (...and Third and Fourth and...)

Now that I've had this crazy shift in my hormone levels I want to see if this changes anything as far as my prognosis is concerned. Before, when my numbers came back showing that I was post-menopausal, I was told there was nothing that could be done and given the dreaded Donor Egg speech. But with my numbers being in the normal range it would appear my only issue is the whole Diminished Ovarian Reserve thing, which while that is still an issue it is a lot more promising when it comes to getting pregnant. I have a friend who had the same AMH as me (0.16) - and I am actually still waiting to get my updated result back on that to see if there is any change - and she got pregnant with her first round of IVF. She's due in a month! Her doctor had the "all it takes is one good egg" philosophy, so I am determined to find a doctor like that for myself. The only issue that concerns me is I still haven't gotten my period, so I don't know if that still disqualifies me for any kind of treatment. According to my latest batch of test results, my FSH/LH/E2 all came back with numbers in the follicular level range, which would mean my body is in the follicular phase. Which would also mean I was totally off in thinking I had ovulated a few weeks ago. I'm baffled and apparently am even more clueless as to what my body is doing than I thought!

So of course I immediately began Googling the crap out of this, looking up anything I could find pertaining to the different phases of the menstrual cycle and particularly the follicular phase.
Basically everything I found pointed to women who aren't ovulating are stuck in the follicular phase (anovulatory cycle). You can actually menstruate in an anovulatory cycle, but it doesn't necessarily mean you ovulated. In my case I haven't been menstruating so it's considered amenorrhea. Also, having an elevated E2 can falsely drop your FSH, and the combo is indicative of DOR. Most of which I already knew.

So I'll be bringing my new numbers to different REs this week. One Monday and one on Tues. My hope is to find someone who is on board with incorporating Eastern Meds (the herbs and acupuncture I'm doing) and to see if anything has changed as far as there being options for me now that my numbers aren't post-menopausal.

I'll keep you posted...

April 20- OMG OMG OMG ?!?!?

Ok so I got a call from the RE I saw the other day at 9am this morning, A SATURDAY. He called to tell me that my test results came back and he wanted to let me know what they were. I had just walked in to the grocery store when he called so I had nowhere to even sit down. He then proceeded to read off my test results and my mind was officially blown...

 Labwork- April 19                        
  FSH: 12.4                                       
  LH:  8                                           
  E2: 149                                         

Initial Labwork- Jan 20
  FSH: 133
  LH: 75
  E2: <20

I was absolutely shaking in the store. He told me not to get too excited because it could be a fluke and to definitely get retested next month. However, he did say according to my numbers it looks like my body made a follicle this month and that we would have been able to see had we done an ultrasound. That is really irking me because he didn't bother doing an ultrasound the other day!! So I don't know what to make of any of this. I didn't expect it AT ALL. I was in such shock that I totally forgot to ask what my AMH was!! (I know that is one number that most likley won't change, but I still want to see. I just didn't even think of it until the second I hung up. I tried calling back immediately, but got voicemail. I'll probably have to wait until after the weekend now. But at least I got the other numbers! I raced home and on my way I called my mom with the news. She instantly started crying. (happy tears) But I told her what the Dr. told me... don't get too excited just yet. When I called my pop he got all choked up, too. I got home and told the hubs. He picked me up and hugged me tight. We both talked about how crazy it seems and he started to worry that maybe the Dr. read the wrong file, which got me wondering the same thing! He did bring up a good point that I didn't even think of... with my numbers being in the "normal" range, if I don't get my period this time would the Dr. now be able to give me the progesterone pills that induces a period? Definitely something I have to look into...

So of course I started looking up the test ranges and what they mean to try to piece things together myself for the time being. A few key things I found regarding my most recent numbers:

FSH- often used as a gauge of ovarian reserve. In general, under 6 is excellent, 6-9 is good, 9-10 fair, 10-13 diminished reserve, 13+ very hard to stimulate.

Estradiol (E2)- normal range 25-75pg/ml- Estradiol suppresses FSH. If your FSH levels are normal but your estradiol levels are high, this indicates that the estradiol is artificially suppressing FSH levels. High levels of estradiol indicate that you might have a problem with your ovarian reserve. Either of these things could mean that you will have more trouble getting pregnant, more trouble ovulating (even with treatment) and reduced success with IVF. Estrogen-replacement therapy might be used in combination with clomiphene (Clomid) to help improve cervical mucus or uterine lining to make the body more hospitable to pregnancy. IVF treatment with lupron flare protocol or assisted hatching to try to compensate for poor quality and/or quantity of ovarian reserve. Because high estradiol levels indicate poor ovarian reserve and poor response to fertility medications, you and your fertility doctor may ultimately need to discuss whether IVF with your own eggs is a viable option for you and your partner. 

So even though I didn't get my AMH back yet, both the FSH and E2 still confirm the status of my diminished ovarian reserve issue hasn't changed. (which I know it can't anyway).

BUT on the bright side, my hormone levels are a hell of a lot better than they were 3 months ago! In January my FSH was POST-Menopausal and my E2 was nonexistent. Now my body is clearly producing estrogen again! I call that a win, even if they aren't the best stats ever. And I DO believe it has everything to do with all the alternative therapies I am doing. 

LH- Follicular Phase: 1.68–15 IU/L 

This must be why the Dr. said he thinks I produced a follicle this month since my LH was an 8. So at least that's gotta be good news! Especially since it was 75 before and "High LH levels and high FSH levels are consistent with primary ovarian failure (ovaries themselves fail to work)." 

Also, I had been worried about taking the DHEA lately because all last week I was breaking out on my face and back. My TCM said it was either my hormone levels rising or the DHEA causing me to produce too much testosterone. Well I got my DHEA levels checked and it was 9, very low, which means it WAS my hormone levels coming back that caused the breakouts! (I never thought I'd be happy about zits! LOL) The RE said I could continue taking the DHEA since my levels were low, so I will keep on doing my 75mg per day.

My plan of action now is to find a different place in town to go to (yet again) and bring my two sets of numbers with me. Reason being, while this second Dr. was nice, it wasn't a very high-end facility and I just don't like that he didn't give me a full work up. So I am on the hunt again for a bigger facility and a Dr. who will treat me as if I am a new patient and give me a full workup and hopefully now I'll actually have some kind of treatment option. I may be jumping the gun, but it's definitely worth a shot!

April 18- Trying A Different RE

Today I went to check out a different RE in town. One that the Fertility Authority recommended to me. I didn't go in with any high expectations or thoughts that the Dr. would tell me the first RE was crazy and I'm really fine. I know I'm not. Numbers don't lie and I still haven't gotten a period, so I definitely didn't walk into the clinic with any sort of delusions that I'd get a different prognosis. The purpose for my visit, really, was to just get rechecked to see if all the alternative supplements and treatments are doing anything. Even if it is only a little bit, I'd be okay with that.

So I went to meet with the Dr. at this other fertility clinic. I was a little concerned that I had called FOUR times in the weeks prior to coming to ask that they email me the forms to fill out so I could have them completed before my appointment. Each time the same receptionist answered and told me she would email them right away and even read my email address off to me to ensure it was correct. Never got sent. So I would up having to fill out the forms when I arrived at the facility. The office was a bit outdated and the receptionist seemed a bit disorganized. But whatevs, my desk is always cluttered with paper at work so I can't judge. Anyway, I went through my story and gave him my previous test results and he talked with me for a while. I told him about my experience with the last RE being so final and negative and that I only had two visits at that clinic before having the POF bomb dropped on me. He said that Drs tend to think in definites. That they know of disorders and conditions and what treatments follow them, but with POF there is no treatment so all they have are statistics and studies to go by. And that if the prognosis isn't good they feel the need to shake the patient into the reality of the situation, not necessarily taking into consideration that patients' need to feel hope. He went on to say some of the same things that the other RE had said and that "only 10% of women with POF get pregnant and it's not because of any Dr. or supplement or alternative treatment... that there is no rhyme or reason it just happens." Which I don't buy that. Because all the people who have written to say they did all these alternative things after being told they had no chance went on to get pregnant naturally. I don't think that's a coincidence. But it's not "medical" so Drs don't really know much about it. They only live in their little bubble of scientific facts and FDA approved blankityblanks. As we continued talking, I was wondering when he was going to take me back to another room to do the ultrasound. He never did. I guess he saw me as just another person with not much of a chance. In fact, when I was first telling my story he stopped me and said, "oh that's right, we talked on the phone earlier this week, right?" Wrong. I had never spoken with him. So he must get lots of patients like me looking for second opinions and a little hope. He did say he had an article for me to read, then opened up his filing cabinet to look for it (which I also thought seemed a bit outdated, but hey, not THAT important in the grand scheme of things). He did throw in the usual catch phrase given to POFers... the dreaded "when you're ready to give up there is always the Donor Egg option." Yeah, not there yet.

Before long we were rapping up the conversation. He told me I still technically had a year before having to get my numbers checked again but I quickly said I want them checked anyway to see if anything I am doing is working. (To which he reminded me that he didn't believe any of those things make a difference). So he wrote me two different scripts to take to a lab whenever I wanted I wanted and said he would be happy to let me know the results over the phone.Then he actually said, "oh and if you liked today's appointment today there is a place on my website for patient testimonials... but if you didn't like the appointment, don't write anything." Really?? LOL Wow. 

So tomorrow I will get my labwork done and see where things stand. Nervous. But I just gotta know if there is even a slight change since the first set of tests...

April 13- Here we gO again...

Ok... So in the oh so fun adventures of checking cervical mucus (now I see why people just go with writing CM! Less of an ick mental image). But as of yesterday it was back to stretchy egg white status (mmm breakfast anyone?). And here's the kicker... It was pretty much exactly 28 days ago that this happened the first time! Which if you recall, was followed by major boob hurtage. So there HAS to be something to this, right? If not, that's an awfully big coincidence. It would appear my body is TRYING like the Little Engine That Could to start working again. My husband refers to it like a car trying to start. Each time the engine revs a little more and hopefully it will eventually turn over.

So, needless to say it was go time with the Hubs- or as it is said on the forums, BD (which I learned stands for Baby Dance)- and of course 86'd the lube just in case.

This Thurs. is my appointment with the new RE to get my numbers rechecked and see if anything has changed. I will definitely run all this by him and see what he thinks. In the meantime we'll just have to spend the next few days practicing the horizontal lambada and hope for the ovulation fairy to sprinkle some baby dust my way. Or hey, at least a visit from dear old Aunt Flo!

April 6- The Big nO

Well... Aunt Flo never paid me a visit. So I guess that means I didn't ovulate. I'd like to think the changes in cervical mucus and ridiculously sore breasts at least means SOMETHING is going on with my hormones.

What did come is a very bad case of the flu. I've never had the flu, and I can assure you I never want it again. Whole body hurts. Feel like death and look like a Walker. If I start grunting and trying to chew on my husband, he's been instructed to shoot me.

Not sure if I should reschedule my new Dr visit on Wednesday. With me being so sick I don't want it to effect my blood work. I don't know if it would have on hormones, but I did read it alters thyroid levels so maybe I should hold off. Which REALLY sucks. :-(

April 3- For My Readers...

First, I want to say I am absolutely amazed to see there are people all over the world from the U.K. all the way to Australia reading my blog. Wow. It's unreal. But as much as I think that is so unbelievably awesome, I want my readers to know that the number one reason I am writing this is so that other women with POF (or any infertility issues for that matter) know they are not alone. There is a whole world out there filled with others who are struggling through the same nightmare. So when I write, it's not just for me to share my experiences through all this... I would love to hear from you, too! My goal is to make this a place for us to share success stories, give comfort, provoke a smile, brainstorm ideas, and foster a little positivity with all this depressing shit, damn it! ;-)

So go ahead share your story, take a load off. And we can all be here with oodles of support, encouragement and hope for each other.

Ok I sound like a Hallmark card.
I'm such a sap!

Big hugs to you all. <3

April 2- Doctor Double Whammy

Wow, so today I got calls from TWO different Dr.'s offices!...The first one stemmed from The Fertility Authority who contacted me from one of my fertility forum posts. We have been writing back and forth the past few weeks and her goal has been to find me a local Dr. who would be willing to give me a second opinion. Now, when I say second opinion it is not that I think a different doctor is going to tell me I don't have POF... I am just looking to find someone who doesn't consider me a lost cause after two visits and one blood test like the last Dr. did. So after a few weeks of searching, My contact at The Fertility Authority found what they think will be a good match! What is really cool about it is she actually called the office for me and explained my situation to see if they would take me as a patient. She explained that the office was very sweet on the phone and that they pride themselves on giving compassionate care. Definitely what I am looking for. So I got it all set up and I have an appointment for next Wednesday morning at 8am!

I am really nervous about it though. Like butterflies in my stomach. Not the idea of meeting a new Dr. or the process behind it. What I fear is my numbers. While I want to be retested to see if all these alternative treatments and supplements are working, I'm absolutely terrified that they aren't. Don't get me wrong, it's only been a little over two months so I'm not expecting miracles. Hell, I'd honestly be happy if it only showed a slight change. It's the thought of there being NO change or, dare I say it, if the numbers are somehow even worse... that's what gives me palpitations.
But I need to bite the bullet and see where I stand. And maybe this new Dr. will at least want to TRY to work with me and not drop me like a hot potato.

So shortly after all this I got a phone call. Remember the Dr. in NJ I wrote to who specializes in High FSH and reproductive hormone disorders? (Dr. Check at the Cooper Institute) Well his office called to tell me he got my letter and would like to accept me as a patient!! If all else fails I feel like this might be the one place that can help me, as they specialize in reproductive hormone disorders and are known for having success stories with even some women who were completely in menopause! Hey, I know it's not a sure thing... but it's the best chance I've got. My appointment is set for June 11th. Two months. I grew up there so I have family I can stay with while I'm there. Then after the initial visit he'll work with me via phone and email and send me for lab work and ultrasounds as needed.

When I called the hubs to tell him I got the call he was really excited and then said, "Wow. This is real." Which is kinda how I feel right now. Like, it's one thing to talk about the possibility of trying different things, but setting an actual appointment in a way solidified it all.

For now, all I can do is wait. And keep doing what I can to fight this battle in every possible way.

UPDATE: Came down with the flu so had to reschedule my appointment until Thurs April 18th. More waiting...

But at least my flight is booked for my appointment with Dr. Check in Jersey!