Clusterf*cked

Severe sleep apnea causes snoring, snoring causes me to wake up, being woken up causes me to be repeatedly tired, anxiety and being overtired causes me to have insomnia, insomnia brings me to sleeping pills, sleeping pills cause vivid dreams and worsen sleep apnea.

Lather. Rinse. Repeat.

How To lose Your Mind In 11 Days

I did mention that I was already struggling with my meds, right? Maybe I shouldn’t have put that out there because ever since then someone, somewhere, decided to turn my world upside down.

Never has 11 days as a work widow seemed longer!

Mommy's Little (Pill) Helper

"You live you learn
You love you learn
You cry you learn
You lose you learn
You bleed you learn
You scream you learn"
You Learn - Alanis Morissette

On May 8 of this year, Mother’s Day, I started to take an antidepressant. It is used to treat depression, obsessive-compulsive disorder (OCD), and generalized anxiety disorder (GAD). In my case, what I believed to be postpartum anxiety.

What have I learned in the last few months on this medication?

Sad Day For Dairy!

So, it's official... after years of being on a pretty standard cocktail of medication for PCOS with minimum amounts of the well-known side effects, I have developed the one I feared most - lactose intolerance!

I am seeing my general doctor today, hoping to get some sort of solution to this. I can't stand the lactose free milk and I can't have too much soy either so... options? Not many it seems, for now.

Milk, I am going to miss you... dearly...

Round 3: Step 4 (Damn oyster continued...)

Yesterday was CD15 and my third ultrasound this round after taking alternating doses of 37.5 IU and 75 IU since the last ultrasound. The hope continues to be that one of the 7mm follicles would have continued to grow and the others would have stayed the same or grown only a little but that there would be a larger dominant one. Well, no such luck yet again. On the right side, there was one at about 8mm and a whole bunch at 6-7mm. On the left side, she just said I was full of smaller follicles (picture the inside of a pomegranate - best analogy I have found to date). The only thing that seems to be responding well yet again is my uterine lining which I have heard each time, but what good does that do if the follicles don't respond? Nothing. Nada. Zip. Bupkus.

I have to continue alternating doses again until CD18 and then go back for another ultrasound. I also had to buy my third Gonal-F pen but this time I got one with 450 IU instead of 300 IU so that I should have enough for a whole week if this continues.

Some of you have asked me how much this has all cost so far so I ran the number yesterday out of my own curiosity as well. Oh, and none of this includes the daily Metformin for the insulin resistance, the Synthroid for my thyroid problem, or the pre-natal vitamins.Here is how it breaks down:

Round 1: 51$ for Provera and Clomid 50mg
Round 2: 85$ for Provera and Clomid 100mg
Round 3: 1203$ and counting for 3 Gonal-F pens (1050 IU) and my Ovidrel injection (yet to be used)

Thankfully, my insurance cover 80% of these medications so we have spent less than 300$ on this. However, they only cover me up to 5000$ in a lifetime so this won't last forever (and if we have to do this again for another baby there probably won't be much left by then). DH will be adding me to his insurance soon as well so we can offset more of the balance but they will only cover up to 2400$ in a lifetime so that one will run out eventually as well. They will also be getting a shock! DH has had this insurance for over 3 years and never made a claim... just wait until they see my bills!

That's it for now... at least the weather is good and we have a long weekend. We are finally getting some much needed work done in the yard which I should probably get back to... hopefully cutting down bushes will take my mind off things for a bit!

New Treatments!

When it rains, look for the rainbow? I don’t know why, but for years now it has either rained or snowed every single time I have had an appointment regarding PCOS and today was no exception. There was only one time that it was sunny and that was the day that both of my doctors agreed to give me clearance to begin Clomid. Ironic, isn’t it? (Yes, I now have Alanis Morissette in my head!)

Now… things are changing gears a bit… ok, a lot. In the past, if you recall, I did Provera for a week, followed by Clomid for a week, had some ultrasounds, and was supposed to have an injection of Human Chorionic Gonadotropin (hCG) had that whole process been successful (which it was not – twice). Now, some steps will remain the same but others are completely different, somewhat scary, and others are just not what I was expecting!

Step 1: Since I still do not have a regular cycle, I need to continue taking Provera to begin AF.

Step 2: Once AF and CD1 arrive, I need to schedule an ultrasound right away. If the ultrasound shows a cyst remaining that is 15mm in diameter or more, I cannot continue with this cycle and treatment will be postponed. However, if there is no cyst I can continue on to the next step.

Step 3: Self-injections… FUN! I will be using the Gonal-F Pen which is a Follicle-Stimulating Hormone (FSH). The pen is preloaded with medication and ready to use. Dosing adjusts with a turn of the dial, making it precise for every injection. You can find an image or the pen here and there are also videos around the internet on how to use it properly if you are really interested. I will be starting on 37.5 IU and the pen holds 8 doses (300 IU). I will be taking 5 doses initially; once daily. Oh yeah, and this pen costs 300-350$! Actually, the pharmacy won’t even order it for me until I pay!

Step 4: On CD9 (or after the injections are done) I have to go back for another ultrasound. This is when they will assess the growth of follicles, see how many I have, and adjust my medication if necessary. I will keep going back for ultrasounds until I have at least one follicle that measures 18mm or more. And yes, this could be a daily trip to the hospital since we do not yet know how I respond! Once I have one (or more) follicles that are the proper size I will receive the injection of Human Chorionic Gonadotropin (hCG) which should make me ovulate in 48 hours or so. At this time, DH also has to “get to work”. He will need to produce a “sample” to be tested in the lab to make sure things are still ok on his end. This test will cost us another 400$ but for once, his name will be on the bill!

Step 5: We return to the hospital 48 hours or so after receiving the hCG injection. At this point, DH will have to produce another “sample” only this time… I will be having Intrauterine Insemination (IUI), otherwise known as Artificial Insemination. I had no idea when I went in this morning that I would be getting ready for this! A plastic catheter will be used to inject DH’s “sample” directly inside my uterus, bypassing the cervix and bringing the sperm closer to the fallopian tubes (where fertilization occurs). This increases the chance of pregnancy but we should also BD to increase our chances… and maybe add some romance to the otherwise un-romantic procedure.

Step 6: I have to have a blood test 16 days later to see if I am pregnant. If positive, I will have to have another ultrasound 2 weeks later to see if the pregnancy is viable.

Yes, there are a number of things that can go very right and/or very wrong in this whole process but it’s the next logical step to take. I am still trying to wrap my head around everything, figure out how to plan for the unexpected, organize schedules, etc… but it will come to me at some point, no need to hurry just yet!

Go figure...

So, I am seeing my doctor tomorrow about starting injections and what do you know? AF arrived on her own late last night!!! I guess this is a good thing. I was hoping to start Provera after seeing my doctor to give myself another week or so to ease into the injection idea but I guess mother nature had other plans. Well, if it is not a false start that is... we will see!

DH will not be coming with me tomorrow so if they have to teach me how to do the injections right away I will be on my own. Hopefully the CLSC can teach us again later so that HE can do them for me... still really nervous about injecting myself!

Round 2: Step 3 (Final Ultrasound) - Strike! You're out!

I had my second and last ultrasound for Round 2 today and there were no changes from Monday. If anything, the one follicle I had was decreasing in size it seems. I am not quite sure if I am feeling my heart beating, or throbbing from being stomped on. For years I waited as patiently as possible to start Clomid … YEARS! I thought it would be the answer to my prayers, but it has failed… 2-0 Clomid.

The doctor on call was going to try Clomid one more time with a higher dose, but I had spoken to my doctor earlier and he agreed that injections would be the best way to go from here. DH was with me today because I knew it would be an emotional appointment and I also knew there was a high chance that we would need to learn how to do the injections. Unfortunately though, my doctor was called into an emergency so I wasn’t able to see him to get the prescription. Without knowing which injections he was going to prescribe, the nursing staff was unable to teach us today.

So, now we wait. I have an appointment on May 6th with my doctor unless he has an earlier cancellation. From there, I start the Provera again and then I go in for an ultrasound around CD1 from what I understand. At this time, they will teach us how to do the injections and I will proceed to freak out (mildly). It seems that the injections have a higher rate of success, but also a higher rate of ovarian hyper stimulation; where numerous follicles begin to develop, thus causing the ovaries to become swollen and enlarged… and painful! Ovulation induction will only be done if you have 4 mature follicles or less. Anything more than that and you are at risk for multiple multiplies and it is not safe. You can however extract some to decrease the amount induced and you can freeze them for future use with in-vitro fertilization (IVF). This is expensive but may be worth it!

A couple of people have asked me today if this is really all worth it. Why am I willing to put myself through all of this? Well, it is because I am stubborn, determined, willing, and able. I want this so badly and I will not let PCOS defeat or deflate me. I admit that I am on a bit of an emotional rollercoaster right now, but it is nothing compared to everything I have been through in the past. It is tough, but it is with purpose and the greater picture is what gets me through. I don’t think I have ever wanted something so badly in all my life…

Round 2: Step 1 Update

We just got back from Crazy Town (NYC)! Good trip but a bit of sensory overload. Not somewhere I want or need to go back to any time in the near future! I did manageto pick up some Pre-Seed while in New York though. Not sure if it is as good as it claims to be but it can't hurt to try it!

Now for the update... like clockwork, 4 days after the last Provera... AF arrived! YAY! I will be starting the Clmoid tomorrow at 100mg and my next ultrasound is scheduled for April 19th.

Fingers and toes crossed!

Round 2: Step 1

So we begin again... I started the Provera today and hopefully things will go smoothly with this step like it did in February. My bags are packed, easter dinner tomorrow, and then we leave early Sunday morning for NYC! I have a whole bunch of things I want to do while we are in there but at the same time... if they don't get done they don't get done. No stress... people watching can be just as entertaining! I may or may not be posting while we are away. We'll see.

Happy Easter everyone!

Round 1: Step 3 (Final Ultrasound) - Swing and a Miss

Ok so… a bit of medical stuff before I explain my end of things.

What is PCOS?

Understanding PCOS is easier if one tries to picture what goes on inside our ovaries every month.

Each month our ovaries begin to ripen a number of follicles… The number of immature follicles changes with each cycle — but during normal times, one or two follicles grow stronger than the others and produce an egg. When we ovulate, the egg in the dominant follicle pops out and flows into the fallopian tube on its way to the uterus. This event is caused by and in turn triggers a host of hormonal secretions, including estrogen and progesterone, which work together to prepare the body to support a pregnancy if the egg is fertilized or a normal monthly period if it is not.

Polycystic ovaries

With PCOS, alterations in a woman’s hormonal pathways cause her ovaries to create a lot of follicles that form like a pearl necklace on the ovaries. No single follicle becomes dominant and ovulation can’t occur.

The information above has been taken from Women to Women.

What Happened?

Last week we saw many follicles as expected. However, one of them was much larger so it seemed as though it may have been the dominant one. When I went back yesterday, the larger one had stopped growing and all of the others had basically caught up to it. So right now there is no visible dominant follicle. Had there been a dominant follicle, I would have received the injection I need to trigger ovulation and would have continued to BD. I will go back on Friday for one last ultrasound to be sure, but the assumption right now is that my body simply did not respond to the lower dose of Clomid.

The next step is to increase the Clomid with the next cycle and hope that it works. Once we find the proper dose (one that I actually respond to) I will have about 3 cycles with it.

Round 1: Step 2

Not much to say other than my fingers and toes are all crossed and I am just hoping for little or no side effects over the next few days/weeks! Let the Clomid battles begin! LOL

The Process

“Life is not meant to be easy, my child; but take courage -- it can be delightful.”

George Bernard Shaw

Life itself, as well as to give life, has definitely not been an easy process and it certainly does take a lot of courage which, thankfully, I have; but delightful? That remains to be seen! My hope is that Madonna was right when she said “If it’s bitter at the start, then it’s sweeter in the end” (lyrics from “Get Together”).

Since a lot of you have asked I have decided to post a summary of what is to come so that I don’t have to keep explaining things. I am currently taking 7 pills a day just to keep things stable but that will be changing next week as we start the next level of treatment and TTC. I will continue to take Synthroid and Metformin now and possibly forever, so I am not including these in this process. Also, for those of you who don’t know, a woman’s cycle begins on the first day of AF. So, now that that’s understood, much of the following will be in CD (cycle days). Sorry if some parts are TMI!

Step 1: Since I do not have a regular cycle, I need to take Provera in order to begin AF. This is simply a progestin, a synthetic variant of the human hormone progesterone. I need to take 2 pills a day for 3 days and then I can expect AF shortly after, bringing me to CD1.

Step 2: Once AF and CD1 arrive, things become quite scheduled. From CD3-7 I have to take Clomid. This is for ovarian stimulation and will cause new follicles (eggs) to develop, typically one or more.

Step 3: On CD9, we have to BD (baby dance) because on CD10 I have to go for an ultrasound to check the follicle development. If the follicle(s) are good, I will be given Ovidrel, an injection of Human Chorionic Gonadotropin (hCG). This will clinically induce ovulation, release the eggs for fertilization, and then we continue to BD as per the doctor’s orders (romantic, huh?). So, why BD on CD9? Think back to high school sex-ed for a minute. Sperm can live for a few days, so this way when you release the eggs on CD10, the “boys” will be there to “greet” them. Oh, and if the follicle(s) are not ready they will tell me to come back for another ultrasound approximately 2 days later. (DH will be present for the first ultrasound, but if I have to go back I will go on my own.)

Step 4: The 2WW (2 week wait). Ovidrel can cause a false positive on a HPT (Home Pregnancy Test) so you have to wait about 2 weeks. At this point, I will use a HPT and get a blood test as well I believe.

I will also be taking pre-natal vitamins throughout this process (and future pregnancy). You take one in the morning and one at night. These are prescription, not over the counter.

So, that’s the process. It is pretty scientific, but does not guarantee a pregnancy. We will do this process three times and if we do not succeed we will move on to in-vitro, adoption, etc… Things are getting a little more complicated, somewhat scheduled, and possibly “hormonal” so I would like to apologize to DH in advance!

Start date: February 24, 2010 while we are in the Dominican Republic.

Diagnosis and Treatment

So, if you recall, this all began in the summer of 2005. By the time I had my first appointment at RVH more than a year had passed and it was now late October, 2006. By this time I had read all that I could about hypothyroidism as well as PCOS and was pretty sure that I had a combination of both. I admit that I have a bad habit of self-diagnosing; however I cannot remember when I have been wrong in my diagnosis. I told the doctor about all of my symptoms and what I felt was wrong. He seemed to agree because he proceeded to run a bunch of tests on me that all relate to PCOS. He also referred me to a new endocrinologist that he works with so that all of my information would be together in one file.

A lot of the initial tests were routine blood tests along with a glucose tolerance test (because PCOS begins with insulin resistance). I also had a Hysterosalpingograhpy (HSG) (which I would not wish on my worst enemy because it HURT a LOT) and what I thought would be a routine ultrasound.

When I had this same ultrasound a year prior, they were able to see one cyst on my ovary. This time, they saw 20 on one and 22 on the other. I had gone from 1 – 42 in one year! I hadn’t seen the results from my other tests yet, but this was confirmation enough that I had PCOS – the “string of pearls” as they are called.

I met with both doctors for a follow up and sure enough, I had PCOS and I have been in treatment ever since. Over the years I have had varying doses of Synthroid for my thyroid problems (currently at 0.150mg), Metformin to treat the insulin resistance (850mg 3 times daily) and I recently began taking iron supplements twice a day because my Anemia seems to have returned. I also have a glucose meter because at one point the endocrinologist had told me I had become a type 2 diabetic but he was being slightly melodramatic and after meeting with the metabolic clinic dietician and nurses they confirmed that I was NOT diabetic. I had used the meter religiously for a few months before meeting with them and not ONCE was my sugar even CLOSE to high. I still test now and then but it is very infrequent and nothing shocking yet!

I had another ultrasound done this past summer (2009) and I am now up to about 50 “pearls” which isn’t so bad considering I had gone from 1-42 in one year and 42-50 in the following three years. I also had a Hysteroscopy done (which they tried to do without painkillers the first time which caused me to vomit and nearly pass out from the pain so I had to go back a month later and do it under the happy effects of nitrous oxide – laughing gas) and the results of that were all clear.

So, what’s next? Stay tuned…

(Note: DH has also been tested, although not nearly as much, and he's  fine.)