Ups and Downs

Last month Sam and I found out we were pregnant. We wrote a post we were planning to publish after a little while. Right now I don't want to post it. It was a real surprise. We had been very focused on IVF that we didn't even think getting pregnant on our own was a possibility. It was a fantastic time, we told our family over Christmas. We have enjoyed our little secret and of course were excited to tell our friends. The theory is that after the HSG test it could have removed some sort of blockage or caused ovulation. We did a few Google searches and it seems we were not the only one who had had this outcome after an HSG test.

When we went in for our first scan they said that our baby's heartbeat was low and the yolk sac was large which could indicate a chromosomal abnormality in which case the pregnancy would not progress. We went back a week later and there was not a heartbeat. We decided to have a D and C done and are recovering now. We also decide to do embryonic testing and will find out the results in 3-4 weeks.

There have been many highs and lows and more insight as to what the future might be like. There won't be any updates for awhile as we are not sure what our next step will be. We are sad but have had much support and are very thankful for our families and especially for each other. We are grateful for the experience but sad about the outcome. For now we are going to plan other adventures to keep ourselves moving forward and put this behind us.

IVF update

For a little recap... Sam and I went in last month, a few times and I've had a cyst. The Doctor said that while the cyst is there it is counter productive to start any meds because we risk growing it and that could be very painful or it could rupture which would also be very painful. I've been happy to wait after hearing that!

Sam and I went back to the clinic on Monday to see if the cyst was gone so we could start IVF. I had more blood drawn to check estrogen levels and another ultra sound. The cyst is very stubborn because IT IS STILL THERE!!! Because the clinic is going to be closed over the Christmas and the New Year it means that we have to wait another month. We are being patient. We want everything to be right when we go through this process and there is no reason to rush. I would rather relax then have to worry about the lab being closed.

We have another appointment on Monday for more blood tests and an ultra sound. The cyst is shrinking and our doctor wants to check the progress.

So it looks like this baby will be our New Years Resolution.

Test results

Our doctor called us on Thursday to give us the results of the blood tests taken. The tests were to check for different causes for POF. We were looking for any autoimmune diseases, fragile X, or other genetic red flags. She also checked on my AMH (egg reserves) and FSH (hormone that talks to ovaries) while she was taking 20 billion vials of blood. She let us know that the test came back all clear! Which was such a relief! I've been worried about it all week. I thought I was going to have all sorts of things that I've been Googling.... Sam said he knew the whole time that nothing would come up on the test. I wish I had the same sense of certainty. My AMH level had dropped a little, it was at .19 instead of .22 like last time but it was taken at a different time of my cycle so the doctor was not to concerned about it.

So... what to do next? Our doctor still felt sure that the next best step would be to stimulate growth of my eggs. Like everything in the process it's either take action today right this second or you wait.... She said to make an appointment for the same day or Friday to come in for a base line ultrasound. They wanted to see if the cyst was gone and if we could start stimulation on Saturday! Saturday!! I didn't even know what the stimulation was going to be. They ordered the medication and overnight them so we would be ready to go. When we went for the ultrasound they thought there was a cyst so they did a blood test to check my estrogen levels to be sure it was a cyst.... and it was. So we wait...

Upside, I know what the meds will be! I will be taking Brevelle (300 iu) and Menopur (75 iu) injections daily for about a week. Then I'll be in and out for ultrasounds over the next few days to see if I have enough mature follicles. Then I will add an injection called Ganirelix to keep my body from ovulating until they are ready and then we will trigger ovulation with another injection called Ovidrel so they can do a retrieval. They also threw in some Progesterone for after. Anyone else tried any of these meds? I'm curious about side effects and success rates.

It was kind of a relief not to start our meds on Saturday. I don't feel ready yet. I have so many questions for my doctor that I still need to talk to her about. I don't like to show up for an ultrasound and then have to overnight a big box of drugs to possibly start the next morning.... I want to know what to expect from each appointment. I'll have to ask her more about what will happen. The last few months have been filled with ups and downs and a lot of comfort eating so I want to drop a few before I get started. I'm not sure how important that but I will need to as our doctor. If she thinks it's a good idea it might be a little longer still.

Let me know if you have questions. Might help me gather thoughts to ask my doctor. What would you ask?

Until next time!

A second opinion and a diagnosis

Sam and I decided to go to the Utah Fertility Clinic and meet with Dr. Shawn Gurtcheff to discuss more options for our case. We filled out a novel sized packet of new patient information and brought our medical records with us to be reviewed. When we sat down to speak with Dr. Gurtcheff she informed me almost right off the bat that she did not think I had perimenopause or that my problem was just that I had a small reserve of eggs left. She said that it was more likely that I had Primary Ovarian Insufficiency or Failure (POF). She said it is very rare and only effects about 1% of women within reproductive age. The most common cause of POF is chemotherapy, it can also be caused by an autoimmune disorder or a genetic disorder. Since I've not had chemo the last two are the options we are looking into but often women with POF do not ever find out why they have it. She said that she thought the IUI would not be effective in our case and that we needed to do something more aggressive. She said that what we would try to do is bump up my medication to 4x the amount that I did for the IUI. If I produce at least 4 to 6 eggs then we could discuss if we felt the next step would be to trigger ovulation and try to conceive on our own or to do a round of IVF. She then did an ultrasound and said that things looked better then she was expecting as my body was already working on growing 6 eggs on its own.

She ordered a boat load of tests! Tests we thought seemed pretty vital to our treatment so it just made us feel more confident with our decision to find a different doctor. They took blood until I had nothing left to give in order to do the genetic makeup to see if I have any recessive genes that might be harmful or Fragile X which is one of the genetic causes of POF. I was pretty nervous having had good and bad experiences with giving blood over the past few years. But she was really good and as long as I didn't look the 10 or 15 minutes it took to fill the vials went by pretty quickly. I told her I wasn't going to look at her but was going to Facebook instead. She didn't seem to mind. The other test she ordered was an HSG test. Anyone had one before? It stands for Hysterosalpingogram, it's where they inject dye into your uterus to see if your Fallopian tubes are open. I had read about this on a forum and people had mixed reactions to the test. Some people didn't handle it well and others said it was uncomfortable but they were okay.... I was not comfortable with the mixed bag of reactions... I went into the clinic a few days after our consultation and did the HSG test. Lucky for me I was fine. I didn't have a bad reaction and nothing but mild cramping for the next few days but I did find out that my uterus and cervix are off to the left and shaped like a curving drain pipe. Want to see a picture?? Well I tried to edit one to make sense and it just ended up looking more like a picture of a creepy alien so I decided to hold back. Best news of all was that the tubes are open!! One less hurdle. This means we can discuss the option of not doing a round of IVF because the eggs should release on their own.

Our next hurdle will be our genetic testing. We get the results next week. I think the worst case scenario would be that I have Fragile X. This is where my X chromosome has a really long tail. If it gets too long in women it can manifest as POF, but in boys it can cause retardation. If I have fragile X then it would take my eggs out of the running completely. If I don't have fragile X and there are not any major repercussions to our children then we can discuss starting the meds. She also mentioned that the lab was closed for part of December due to the holidays so we might have to wait until the new year to get started.

Dr. Gurtcheff mentioned that with this course of treatment, if all the variables work out, we stand a 20% chance of conceiving with my eggs. We stand a 70% chance of conceiving using a donor. I've done more research now and have looked into other stories of people that did use a donor egg and I am starting to feel more comfortable. These people seemed happy and I didn't sense any of them had a disconnect from their children because they were created with someone else's DNA. We are more seriously considering this as an option but not until after we feel we have exhausted our own chances. If we can't use my eggs the sense of urgency will be removed from the equation all together.

Even though the diagnosis wasn't great and we might have to resort to the same suggestion that the first doctor gave us, it was so relieving to know we had a doctor that understood us and what was happening and to have a game plan that made sense for us. I wont have any more updates until our appointment next week and trust me the wait is driving me crazy!!! But until then I'll try not to think about it because if I've learned anything it's that things can change. Wish us luck in practicing patience and flexibility.

Bear with me... Medical histories are boring by nature

I can remember having my first hot flash in my late teens. I didn't think anything of it because I didn't know what it was. They only ever occurred once in a blue moon. By the time I was 24 it felt like for 2 minutes out of every hour in my day I was anxiously stranded in the Sahara Desert. I wasn't sleeping through the night anymore because it was covers on and snuggled in and then in an instant I was ripping them off and sweating then awake again a few minutes later freezing cold. I had finally had enough and went to my OB/GYN's office to ask her what she thought. I saw Pam Sunshine, the PA at the women's center at Alta View Hospital. After many blood tests, ultrasounds, and confirming with her colleagues Pam told me that she was of the opinion that I had Perimenopause. It explained why my hormone levels would change to that of 50 year old during a month/months while I was having hot flashes and then bounce back to a normal 24 year old levels when I was not. She referred me to an endocrinologist for further testing to confirm that my thyroid and adrenal glands where not the issues. I have an affinity for Pam Sunshine... I mean the name alone is joyful. But the endocrinologist she referred me too.... I can't even remember his name. I only remember that it was foreign and had to many vowels for me to even remember it when setting appointments. He was a slight, older man that would sit with his legs crossed and subject me to ridiculous tests over and over and over again! I had exams, blood tests at all times of the month for months and months, and and my personal favorite... for a whole day I had a huge orange medical jug, I mean bigger then a gallon of milk and I had to carry a duffel bag because it didn't fit upright in any purse I had. (and it was of the utmost importance that it be upright) I had to carry this huge jug around and here is the best part, pee in it! All damn day! It was a week day too so this included going to work. I took this as a challenge. It was huge and I can drink and pee a lot. I filled that sucker up and took it back to a very shocked lab tech. It just ended up being humiliating to see his reaction. I obviously was the first person in the history of people caring jugs of pee around all day to return it full. The orange pee jug was to measure hormone levels through out the day to get an average. He found nothing wrong with my adrenal glands or my thyroid and sent me back to Pam Sunshine. She told me she was confident in her diagnosis and that if Sam and I planned to have children we shouldn't put it off any longer.

This is the phase that I like to call denial and it lasted a long time. While I knew I was having symptoms of menopause and these symptoms had increased over the last few years I didn't believe that a day would come anytime soon where I would not be able to have children. I did a few noncommittal Google searches and read what I needed to come to the conclusion that I could probably wait a little longer. Simply put Sam and I had discussed having children, maybe, when we were 30. At 24 we just weren't ready yet to commit ourselves to a family unit. But in the back of our minds was a little niggle saying... you may not get a chance. After a few months we decided to stop birth control and to just see what happened. We got a little excited at the prospect of being the first of our friends to have children especially since we didn't think anyone would have expected it from the two of us. But that time came and passed and, simply put, nothing happened. My friends were having children and we began to resign ourselves to not having children. Sam and I felt okay with that. To be honest the thing that bothered us most was all the money wasted on contraception.

Now we enter the next phase. I'll call this one, a change of heart. It had been over a year since I was told I had Perimenopause. We told a few people about it but really tried to keep it under our hats since the idea of surprising people with being pregnant was so alluring! Sam and I moved to England and this is where I began to think I wanted to have a baby in England. The timing finally started to feel right. I knew I could surprise the pants off people because they wouldn't be seeing me on a regular basis. I began to fantasize about showing up home for Christmas with a big belly and finally telling everyone that Sam and I were expecting. I went to another doctor and told her what was going on. She told me that Sam and I had to be actively trying for 2 years before we were eligible for any aid from the NHS. We still had a year to go so we just kept plugging away on our own to see what would happen. I started doing normal TTC (Trying To Conceive) things like tracking cycles on apps, and ovulation tests. Mostly these things just became more frustrating. I only got one positive ovulation test ever and it didn't take long before it started to sink in that we might actually have a real fertility issue on our hands. After another year passed I went back to my GP. We were led to believe that it was unlikely the NHS was going to cover anything and it was going to be out of our pocket in the end. It was also so close to us coming home from England that we decided to wait... just a little longer and see a doctor when we got back.

A few months after we got back a particularly nasty bout of hot flashes that almost drove me to the brink of MADNESS also stirred me to go see another doctor. I had to do something because I couldn't live with the symptoms of my hormones any longer. We had new insurance and a local fertility clinic, we're talking just around the corner from both our offices, so we got a referral. July 2014 we saw our first fertility doc. At this point Sam and I were invested in this. We did more hormone level testing and ultrasounds for me and a semen analysis for Sam. Sam's levels were, and I quote, "Olympic quality". Sam could probably quote his levels to you with pride and many of you have already heard all about it. My levels showed that my AMH was low at .22 which means a low egg count and because it was not a time were I was getting hot flashes my FSH was in a good range at 8.5, this is the hormone in your brain that sends a message to your ovaries to work. If you are in menopause then the level is higher because your brain is trying to scream at your ovaries to work. The doctor said that we should try an IUI or Inter-Uterine Insemination at the beginning of October.

When October came I went for a base line ultra sound and started taking Letrozole. I took that for 5 days and went back in for another ultrasound and there was a 15mm egg growing! We were so excited! It was crazy to see a little egg on the screen. They told me to start taking an injection called Gonel-F for the next 3 days and come back for another ultrasound and hopefully we could trigger ovulation with another injection for the next week. That freaked me the eff out! I had no idea injections administered by yours truly would be involved in the process! I took the injection pen home and tried to follow along with the how to video. I kept saying to myself just don't think about it and follow the video, it will be over before you know it. The injection came and went and the girl on the screen was done and I was still standing there with the needle hovering over my stomach. It took about a half hour to work up the courage to stick myself and I gave myself a "test" prick and a bruise in the process. The next few days got easier and by the end of the third day I was a pro. When I went back for the next ultrasound they couldn't find the egg. They thought it had died or had already been ovulated so they sent me for a progesterone blood test to find out if I had ovulated. After an anxious week of waiting for the test results it was only .33. When you ovulate your level should be around 25, so the assumption was that the egg had died and we had to wait till the next month. It was hard to swallow because we allowed ourselves to believe that this would obviously work. There is basically no chance involved at all because everything is so controlled. Disappointed we just had to wait for the next month.

When it was finally time to go back for a baseline ultrasound the excitement was back! Now I knew more about the process and I was ready to dive right in! In the ultrasound the doctor found a cyst. He said it could be the egg from last month and it had not been visible on the ultrasound. WHAT!! It could have been there the whole time! That was annoying.... He then told us that there was nothing to do because if we started any meds we risked growing the cyst and it would become painful or rupture. We just had to keep waiting. He then told us something that sent us reeling. He walked clear across the room and said that we could continue to try IUI but that they probably wouldn't work but he suggested we use a donor egg and IVF. That knocked us down a few pegs. Were my eggs really that bad? We had no idea that after one failed attempt at an IUI it would result in this prognosis. Just to give up on using my eggs all together. It was devastating! So many things were running through my mind as I thought about having a baby that looked like my husband and someone else. The idea of having a baby using a siblings egg and having that baby that looked like my sister and my husband. Wondering what my sister would feel towards a baby created with her eggs? Feeling blind sided as this was not something we had ever discussed before and lastly feeling terribly inadequate. We went home and digested what had been said and decided that before we give up on having a baby with our own DNA we would get a second opinion.