Good signs moving forward

I haven't had time to post anything sooner because I have had a lot going on a work lately. I'm in the process of hiring a new staff person, preparing for my presentation on automating authority control (which happened this morning and went well), and tying up loose ends at work. Plus I was out sick with a stomach bug that really knocked me out for a day; top that with two doctors appointments and it's been a busy week for sure. So now that everything seems to have wrapped up nicely, I can finally sit and write this post.

My first doctor appointment this week was to see an endometriosis specialist. I wasn't a big fan of his style, but he really knows his stuff. He explained everything about endometriosis- how you get it, what it is, what causes it to grow, pros and cons of different treatments, and studies on hormones. I had already learned a bunch of it, but there were a few new things I found especially relevant right now.
• Studies have shown that no hormones and estrogen only hormone replacement therapies have minimal impact on increasing one's chance for breast cancer. Estrogen and progesterone together increases the chances drastically. But estrogen gets the bad reputation for some reason.
• While a hysterectomy is not a cure for endometriosis, when combined by excision of what endo is visible, 90+% of patients have less pain. There are complications that can happen, but hearing that eased my fears that this surgery was a bad idea. I should expect to feel better afterwards, but there is a chance later in the future that I might need another excision surgery. I can live with that.
Overall, I feel like I'm on the right track. This appointment gave me more tools for advocating for my own health in the future.

My second appointment was my pre-op admission stuff. I got the insurance break down (the hospital alone charges a crap ton of money let alone the other parties involved). Then I answered what seemed like a million questions with the nurse about my health background. I felt pretty at ease most of the time, especially after the nurse said her son shares my exact birthday down to the year. If that's not a good sign, I don't know what it. She drew blood to run some tests and gave me all of my directions for preparing for Monday morning.

So come Monday, I'll be starting a new chapter in my life, surgical menopause. I will no longer have a uterus or my ovaries or my one remaining tube. No more periods but no more hormones either unless I want to add them back in. And hopefully a life with less pain. It will be a six week recovery process, during which I can't lift more than 10 pounds. The kids weigh about 26-27 pounds each, so it's going to be a long six weeks of not being able to carry them. We have tried working in getting them to walk on their own more the last few weeks and they are doing better. My hope is that they instinctively know they need to behave a little bit better during this time.

Overall, I'm feeling positive about my surgery on Monday. All of the signs the universe has thrown out there have been positive. I haven't seen one negative one. Everything just seems to keep falling into place. Of course, I'm not looking forward to being cut open, but this will be my fifth surgery in a little over 4 years so I know in general what to expect. I'm looking forward to the end result.

How my body has betrayed me

I don't really know how to start this post. I last posted in early April about all of the doctor's visits regarding the pain/infection in my ovary. I did make an appointment with the gynecological oncologist in April and we decided instead of rushing to surgery, let's give the antibiotics a few months and see what everything looks like. I had a few conferences in May and June and the kids' birthday in July, so I didn't want to do anything before mid-July anyways. The pain had gone away and I had started doing the nuvaring back to back so no period for a while.

I went in for another scan in mid-June. The oncologist doesn't do scans in office like my gynecologist so I went to an imaging place. They got me in super quick. The technician didn't describe anything she was seeing, nor did I get to even see the screen. All I could tell about the procedure was that she took at ton of pictures. I wondered at the time if it was normal to have that many taken. I knew that I wouldn't know anything until my follow up with the oncologist.

Spencer had a fair to attend for work during my appointment, so I took my mom with me for moral support. The doctor came in and told us that what's on my ovaries is smaller, but still there and still a decent size. She suspects that the infection and inflammation is gone, but that my endometriomas are still there and rather big. I have two on my left side that are the size of a lime and a walnut and one on my right the size of a grape. She suggested just taking everything out. So at the ripe age of 32, I get to go through surgical menopause. Because of my endometriosis, hormone replacement therapy may not be the best route for me afterwards.

I'm still trying to wrap my head around it all. I'm scheduled for surgery on August 5th right now. I kept debating whether or not to postpone again for a long time, but the pain comes back every now and again. Plus my boss said August would be a good time for me to be out for awhile. I have a consult with an endometriosis expert on the 30th. That's mostly for a second opinion on how to proceed after surgery (i.e., hormone replacement or not). This surgery won't cure me of my endometriosis, but perhaps it can go along way toward easing the pain.

Deep cleaning

Two weeks ago, I had surgery to remove the large endometriomas on my ovaries and clean up a bunch of other stuff in me.  (Don't worry if you didn't know, I didn't tell too many people).

Doctor said that everything went well.  There was a lot of endometriosis to clean up, but this was still surface-level; it hadn't embedded itself yet (reminded me of mold kind of). He removed the cysts off each ovary.  Funny thing at this point: my bowels were almost completely wrapped around my left ovary (probably part of the reason that one kept twinging).  The doctor separated everything and placed some bio-gel stuff inside to help keep things in its place while I heal.  There was some abnormal stuff inside my uterus, but he clean that up as well. 

I had a rough time coming out of the anesthesia, cold and nauseous. But we avoided staying overnight and got to go home.  It was robotic surgery, so there is very minimal bruising around the incisions. The pain afterwards wasn't too bad, except the gas that gets trapped with laparoscopy procedures. Once that found its way out, recovery went decently.  The doctor got his way and kept me out for two whole weeks.  I felt fine to return to work by the end of the first week, but since the doctor wouldn't release me, I spent the time watching TV, letting the dog in and out, and doing a few light chores.  

My post-op appointment this morning finally released me back to work!  I got to see all of the pictures from the surgery, which I love. The doctor removed the glue over my incisions, which look really good.  Not sure if it was seeing what they did, my incisions are exposed to more rubbing from my shirt now that the glue is gone, or using my abs to sit up and lay back, but I am feeling a tad sore after the appointment.  But doctor said that we'll do an ultrasound in a few weeks and if that looks good, we could start a new transfer cycle soon!

I just had to know...

Over the last few weeks, we have gotten all of our test results back from Dr. Gada's office. Everything came back normal, which is good news. We met with the doctor today to discuss our next steps. We had a really good chat about everything. We have two options: test the embryos or proceed with another frozen transfer with a different protocol than we've tried before.  The new protocol would exclude lupron (yay! that saves nearly $700 and dozens of shots) and use a higher dose of estrogen to prep me for transfer.  We'd also use baby aspirin (because it doesn't hurt and some doctors believe it helps so why not?) and vitamin D supplements (my levels were slightly low). We also discussed how many embryos we should transfer.  He went through the usual one is safest, but also said that two would not be something he'd necessarily refuse. Because we have had so many failed transfers, he is okay with us being more aggressive by transferring two embryos.  As you may have guessed, we have decided to do another transfer and wait on testing the embryos.

We are excited to try again, but have a few steps before we get to that. We need to transfer the embryos from our first clinic. This involves a bunch of paperwork before I can go pick them up and drop them off in Southlake.  We also have another hurdle before we attempt another cycle....

The last few weeks, I've had a pain in my left ovary area. I assumed it was my endometrioma twinging, but part of me was scared that it's actually my one tube blocked and swollen like what was wrong with my other tube.  The doctor offered to do a scan to ease my mind.   (This is where the title of this post comes in.)  Turns out my tube is fine; it is my endometrioma causing my pain. It's gotten so big that the doctor has said surgery may actually be an option before a transfer. He said we are borderline needing the surgery; it could be helpful, or it may not be necessary and a frozen transfer would work just fine without it. It's up to us to decide at this point.

We have decided to go ahead and do the surgery before attempting another cycle. Insurance will cover the robotic surgery and I'm already aways into my out of pocket max this year, so we won't pay as much as we would next year. Looks like we may get to itemize our taxes again and deduct our medical expenses. Plus, cleaning out the endometriosis will help my fertility (or at least my pain levels). Surgery is planned for October 7 at the moment. Hopefully recovery goes quickly and we can go straight into a frozen cycle immediately after.

One of these days we will leave the doctors office with good news....

How this crazy journey all began...

Hubby and I have been trying to make a baby for over a year now. I think it’s safe to say that both of us thought it would be quick and easy to get pregnant since we are both rather healthy and young. After nine months of trying and increasingly erratic cycles, I finally went to see the doctor after my period was late but pregnancy tests were still negative.  2 doctors, lots of blood draws, a 24 hour urine test, and two ultrasound scans (one thyroid and one pelvic) later, I finally had some answers: PCOS (polycystic ovarian syndrome).  The pelvic ultrasound also revealed that I had a cyst in my left ovary and my right fallopian tube was blocked.  I decided to have surgery to remove the cyst and fix the tube so that we have a better chance of conceiving.  This surgery was much shorter than planned since once inside he found that I have stage IV endometriosis and closed me up instead of proceeding.  So basically, with both endometriosis and PCOS, IVF is likely our only option for getting pregnant; because of this we got a referral to a fertility specialist to find out what they suggest.

Dr. D is who we picked for our fertility specialist. Our meeting with him in mid June was a whirlwind.  We discussed my background and infertility, then he did another pelvic ultrasound, which was uncomfortable because of my endo. He definitely confirmed PCOS since I have about 30 or more follicles on each ovary.  He also informed us that the cysts were actually endometriosis on the ovary, forming “chocolate cysts”. These are basically pockets of blood in my ovary that have no way to drain, so it’s just nasty old blood trapped in my ovary. Gross!

After the exam, we went back to his office to talk.  Dr. D said I have lots of eggs, so that is good.  In order to remove the endometriosis more permanently, he’d have to take out a chunk of eggs as well, so he wants to wait on that.  He said with the tube blockage, the cysts on my ovaries, and my PCOS, about our only chances for pregnancy is IVF. I have both the hormonal and structural problems that are associated with infertility; luckily, hubby has good sperm.  He recommended the option that requires less egg stimulation since I have so many follicles. The doctor also recommended optimizing my plumbing before starting IVF.  This involves removing my right tube and draining the endo cyst on my right ovary.  This will prevent complications during the IVF procedure and pregnancy.  Apparently my tube drains into my uterus because it cannot go out the normal way into my pelvic cavity.  This can cut my success rate by 25% for IVF/pregnancy.  With the endo cyst, removing eggs could puncture the cyst and cause bacteria-ridden old blood to leak into my ovary, infecting it.  We opted for the surgery, especially since I’ve already met my out-of-pocket max with the insurance which means it’s free.

The surgery went ok. My recovery was a bit tougher than the last time, dealing with a few complications like constipation from the pain meds and my endo flaring up later in the week.  I started birth control pills so that I won’t have a period for a while; the nurse told me I could just skip the sugar pills and go straight to another package, so that’s what I did in order to avoid the endo pain associated with my period.   The next step is to get our IVF scheduled and paid for, but I’ll save that for another post. 

Welcome!

Hi everyone,

I've decided that I want to document our journey with IVF (in vitro fertilization) so that others can understand more about the process.  I feel like this is such a mysterious journey that only the unlucky few have to take.  So many people I've spoken with recently know very little about the process (I was included in that category just six months ago!) and I want to change that.  I hope to provide some education and awareness for IVF, PCOS, and endometriosis with this blog as well as have a lasting record of how we got our future kid.  I've kept a diary of sorts since this all began in February, so I'll probably go back and post some of what I wrote in the past, in addition to documenting everything I can once we start IVF next month.

Thank you for reading and supporting us.  I can't even begin to describe how great it feels to know so many people are rooting for us and care about us.  Please feel free to leave comments and ask questions as we move forward. Nothing is too personal to me anymore, but I might privately answer any questions that may not belong in public.

Love,
S