I’ve waited to post this update for quite some time, mostly because I wanted to have something to actually update about. Last year I wanted to work on getting things in order health-wise, but it just never really happened. I decided at the end of 2015 that I was going to wait no more.
In the past, I’ve seen doctors that didn’t really have anything to offer about what was going on with my health. I felt like they came in to see me, met with me for a few minutes, prescribed something they thought may suffice and sent me on my way. I was just another number to them. At one point, I asked a doctor about the MTHFR gene mutation. She hadn’t heard of it and said she would get back to me. She called me later that day and told me that it had something to do with cancer. Um, no, Not exactly. She was obviously the wrong doctor to ask about that.
For months I researched different naturpathic doctors and I actually emailed one to see if I could schedule an appointment (in January 2015). Apparently email is not the best way to get all doctors offices to respond to you, but that was the easiest for me. I never heard back from the one that I thought I wanted to see.
The doctor I work for (an optometrist) has us deliver cupcakes to our referring providers each Christmas. I was looking at the doctors at one of the referring provider offices and I saw an ND that seems like she offered the services that I was really looking for (a doctor that specializes in infertility). I emailed her clinic and they were more than happy to work with me through email (YAY!!). I got on the schedule and in January, I went to see one of the most amazing doctors I have ever had the pleasure of working with!
Dr. McC. is a naturopath and it’s the first time I’ve ever seen a holistic doctor. She brought me into her office and got my full health history and offered lots of different scenarios and options and thoughts and compassion. I felt like I was talking with a friend and that she actually cared about me as a person. This is the first time ever that I have received this kind of care from a doctor.
She did a full blood work-up, including genetic testing to see if I had the markers for any autoimmune diseases (since my mom has four, and I’m a self-diagnosed celiac), as well as testing to see if I have the MTHFR gene mutation, since it affects fertility.
I told the doctor that I have suspected that I have endometriosis for several years. She did a pelvic exam and said that my ovaries and uterus are very immobile, which indicates lots of scar tissue is likely present, which is indicative of endometriosis.
My body has been holding onto too much bad stuff (hormones, estrogen) so I was prescribed several things to help my body to break up and process everything correctly. My entire body (but mostly back, pelvic area and joints) are in pain 24/7/365 so I was prescribed anti-inflammatories (omega-3).
Just because I may be asked about everything I was prescribed here they all are, but be sure to talk with your doctor before starting any of them if you feel they may be of benefit to you.
Garden of Life Prenatal
Omega 3 fatty acids
Herbs (my doctor created tinctures for me – an Estrogen formula and a Progesterone formula)
Detox Formula (to improve liver’s ability to break down hormones)
Hormone Protect (detoxes estrogen)
DIM (I don’t remember what this is for)
I left this appointment feeling so much better because I was beginning to get answers to all of the questions I’ve had for so many years, but especially the last few years. Because I’m in pain all the time, and because we’ve been trying to have a baby for 13+ years, etc. so many questions have been unanswered and it’s just been a guessing game.
I was also referred to an endo specialist in Seattle so I made an appointment with her shortly after.
Before I saw the endo specialist though, I had a follow-up appointment with Dr. McC. a few weeks later to go over the results of the blood tests.
A quick overview that I received:
Vitamin D – low (not surprising since I live in Washington where we have several months of dark, dreary days, and this was in the winter) – at this appointment I was prescribed 10,000 iu since it was so low.
Folate – low
Iron and B12 – looks great
Blood cells are healthy
Thyroid looks great
Estrogen – high / normal
Progesterone is at a non-ovulating value: at the time of my appointment I “should have” ovulated by then but according to my progesterone level, I hadn’t yet. It was recommended that I begin tracking my ovulation with OPT’s. It has been several years since I tracked ovulation. I just got burnt out on doing it, and I was tracking it with BBT, which was such a headache. I have been tracking with OPT’s since January / February and seem to be ovulating early / normally. I think it may have something to do with the tinctures I’ve been taking because my cycles now seem to be on a more regular cycle compared to being all over the place for as long as I can remember.
I don’t have any of the markers (yet) that indicate any autoimmune diseases. Celiac wouldn’t show up because I haven’t had gluten in almost six years, and my mom didn’t develop the autoimmune diseases she has until later in life. I’m not out of the woods, but for now, I’m good.
As for the MTHFR gene mutation, there are several possible mutations. I’ll just write it exactly as I received it from the doctor, because it’s kind of confusing.
What is MTHFR?
MTHFR is an enzyme in the body required to activate (or, methylate) folate, a B-vitamin with many critical functions in the body.
What is a MTHFR DNA mutation?
The gene mutations, if present, make you less efficient at activating folate which makes it usable to the body. There are two mutations we currently test for: C677T and A1298C. Certain copies of these mutations are linked to many chronic diseases including:
Diabetes, cancer, pulmonary embolism, cleft palette, spina bifida, autism, Parkinson’s, neural tube defects, atherosclerosis, immune deficiency, ADD/ADHD, multiple sclerosis, Alzheimer’s, dementia, chemical sensitivity, congenital heart defects, fibromyalgia, chronic fatigue syndrome, depression, alcoholism, addictive behavior, insomnia, down’s syndrome, chronic viral infections, thyroid dysfunction, neuropathy, recurrent miscarriage, infertility, anxiety, schizophrenia, bipolar, allergies
Do I have MTHFR gene mutation?
Your MTHFR lab report indates you have 0 copies of C677T gene mutation.
And / or 1 copy of the A1298C gene mutation.
Heterozygous = 1 copy of the gene from either parent
Homozygous = 1 copy of the gene from each parent
What do my gene mutations mean?
MTHFR C677T heterozygous = 40% loss of function in activating folate
MTHFR C677T homozygous = 70% loss of function in activating folate
MTHFR A1298C heterozygous = no loss of function in activating folate
MTHFR A1298C homozygous = slight decrease in DNA methylation in activating folate
MTHFR C677T + MTHFR A1298C Compound heterzygous = 50% loss of function
What can I do?
Avoid folic acid in supplements!
Take activated folate as 5-MTHF. Your dose depends on genetic results. My recommended dose is 1 mg each morning.
Basically, I have one copy of the A1298C, but it’s not necessarily a bad thing for me. If I had one or two copies from each parent, it would affect my fertility.
At this appointment, I was also prescribed DHEA to increase my egg quality.
This appointment was so good. Again, I was getting ANSWERS!! It’s been such a long time coming and now I’m on a roll getting things taken care of.
So, what was next? In March, I had my first appointment with the endo specialist. Honestly, I read through her bio and she sounded amazing, but out of the two recommended to me, I chose her because she looked so nice and her name is Meghan. haha!
It’s funny when you see these doctors on-line and they look one way and then you see them in person and they really don’t look like their bio picture. That happened with both doctors.
Meeting with this new doctor, Dr. McK., I was nervous because of my experience with all of the doctors in the past, but this doctor was a personal recommendation from my ND, someone that she works closely with. She, too, was so great! I gave her my full medical / fertility history and she had lots to say. She kept telling me that she could throw a whole bunch of info at me but she didn’t want to overwhelm me. I told her I was ready for as much information as she had to give. I was ready for answers and recommendations.
My main goal in seeing her was to get the official diagnosis of endometriosis. I have “known” for SO LONG that I just want to KNOW once and for all. She said that now days they don’t just jump right into doing exploratory surgery because it can cause more harm than good. It could add more scar tissue, which is definitely something that wouldn’t be a good thing After much discussion, it was advised that I get an updated ultrasound to find out what was going on inside of my body. She also did a pelvic exam and mentioned that my ovaries and uterus were immobile, which again, was indicative of scar tissue / endometriosis – the same thing that my ND had mentioned. More confirmation.
A couple of years ago I had an ultrasound (and I wish I could remember WHY I had it, but that detail has vacated my memory), and it was discovered that I had three fibroids. At the time, I was told that they didn’t need to be removed unless I was trying to get pregnant – HELLO! I AM!! But whatever, I didn’t have anything further done. This was performed at the doctors office that just treated patients like a number so I didn’t pursue anything at the time. I was so fed up and just done with this clinic.
Now that an updated ultrasound is recommended, I was curious what they would find. It was scheduled to be done shortly after my next cycle began and I was to return to Dr. McK. about an (agonizing) month later to discuss the results.
I went to the ultrasound on April 1st. I was to get the internal and external ultrasound. The tech explained to me what she was seeing. She showed me my uterus, ovaries, cervix, etc. It didn’t hurt while she was doing it, but OH.MY.WORD. I was in SO MUCH PAIN for the next week or so. Like, I could barely walk. Ugh, no good!
FINALLY, yesterday, I had my follow-up with Dr. McK. to discuss the results of the ultrasound. My uterus is anteverted and the ultrasound report only comments on one fibroid. I didn’t think they could go away on their own, but either they did or the ultrasound tech didn’t see the other two fibroids because only one was mentioned (that is 2.4 cm).
My right ovary has multiple small follicles, no large cysts or solid masses. It was not tender but it was immobile (again, more confirmation of endo).
My left ovary is a mess. Which makes sense – this is the side that I often feel “pulling” and have the most pain. It is “abnormal, enlarged due to complex cyst with homogeneous medium level echogenicities and two anechoic cysts. Immobile however non tender.” Basically, I have two water balloon-like cysts on my ovary (the kind that may go away on their own), but they are making my ovary about twice the size of what it should be. The other cyst is likely an endometrioma and it will not go away on its own. The cyst(s) are about the size of a golf ball. “Enlarged left ovary containing 5.3 cm complex cyst, likely endometrioma; 3.4 cm simple cyst with avascular 4 mm mural nodule and 2.5 cm simple cyst / follicle. Ovary is immobile consistent with presence of adhesions / endometriosis.”
I don’t really know what I’m looking at here, but here is the ultrasound pic of my diseased left ovary:
SO, what does this all mean? Well, good question. haha! We have a few different options and we just need to figure out and decide what we want to do.
If we do surgery to remove the endometrioma / cyst, I may lose my left ovary. I have to decide if I’m okay with that, or not.
Or, we can leave it and monitor every 6 months to make sure it’s not getting larger / causing me more pain.
If we decide to do IVF, I should probably have it removed prior to that since the drugs will exhaberate it and enlarge my ovaries in order to harvest as many eggs as possible.
If we decide to do embryo adoption, my ovaries and tubes will not be involved in this process, we would just need to thicken my uterine lining and prepare it to carry a baby. Therefore, surgery would not be required.
Or, we could just jump right to foster-to-adopt and / or infant adoption and not worry about surgery / my ovary / cyst unless I’m in unbearable pain and want to risk losing my ovary.
At this point, after getting all of this information, we still have a lot to talk about. Our next step is to have Kyle do an updated sperm analysis and find out how his ulcerative colitis / meds have affected his sperm mobility / motility. After we get that done and get the results, we will then have a phone or in-office consult with a fertility specialist to find out if it is even a possibility of me getting pregnant with IVF / embryo adoption. Kyle graduates in just 6 weeks (from today!) so we may just wait to do the SA until he’s done with school. After we have the full picture, we can then move forward in one way or another with finally starting our family. It’s been such a long road, and to finally be able to look at moving forward is exciting.
We are both open to adoption (foster-to-adopt), but in our heart-of-hearts, I believe we both want a baby and that is not a guarantee through foster-to-adopt. Plus, we also have to take into consideration the cost of everything. There is a program here in WA that lets you foster-to-adopt for free, which is completely amazing and such a wonderful ministry, but for any other method of getting a child into our family, we’re looking at upwards of $30k. I don’t even know the actual amount of IVF with ICSI (which is likely the way we would have to go with IVF). We could be looking at even more than $30k and it’s no guarantee that I would get pregnant.
As you can see, we have options but what is the best option for us? We just don’t know right now, but we’re trying to figure it out. 🙂 It’s all in God’s hand just as it has been all these years. I’m not fretting about anything (yet – ha!). I’m honestly just really happy to finally be able to even think about making these decisions!
“We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love.”Romans 5:3-5