Category — Operation Heads Up

A sigh of relief–the mammogram came back clear.

Two weeks ago, I found a lump in my right breast after 20+ years of problem-free self-breast exams. For two weeks, I walked around, my fingers rubbing the lump, trying not to Google anything about breast cancer. Do you know what it felt like? You know how when you’re home alone and you hear a noise, you pause from movement, holding your breath, waiting to hear it again so you can identify it as a normal house creak or a warning that a serial killer is about to break in through your kitchen window? You want to breath and move, but you’re worried that if you move, the sound will come again at that very moment and it will be lost amongst the other noises such as the rustle of the blanket or the intake of breath.

That’s how I felt for two weeks.

I really didn’t want to talk about it because talking about it made my hand return to my breast and I had already spent enough time walking around the house alone, my fingers palpitating it. I had driven around Washington, D.C. with my hand inside my shirt (oh please don’t look in my car–I swear I’m not a perv, just a nervous woman with a lump in her breast). The night before the mammogram, I had lifted my t-shirt to mark my breast again with a Sharpie and at that moment, my telephone rang showing my neighbour’s name on the caller ID. I dropped my shirt and stared in horror at the window, certain that he was calling to gently inform me that the whole neighbourhood is horrified by the amount of time I spend copping a feel these days.

Except that he was calling because he wanted me to take care of some house stuff while he was away.

I am writing out these details in case they are helpful to someone else who is in the same position of waiting for a mammogram. Please add your own advice or experience at the bottom of the post, especially if I leave out anything because every mammogram is different. It’s sort of a non-IF Operation Heads Up.

The first thing to know is that there are two types of mammograms: diagnostic or screening. Most people have a screening mammogram which means that a series of images are taken, they are read by someone later on, and you receive a report in the mail. Diagnostic mammograms need to be scheduled at special times and the difference is that additional images will be taken of the site of the lump and a doctor will read it immediately so they can follow up with additional tests while you are in the office. My mammogram included a follow up ultrasound.

On the day of the mammogram, do not wear deodorant, lotions, or powders near your chest. The reason is that these things smudge the plates and not only transfer to the machine, but also can blur the image. The place I went had spray deodorant in the bathroom, though I threw my deodorant in my purse the night before so that (1) I could use it afterwards and (2) I didn’t forget and accidentally put it on in the morning.

The other thing to know is to not wear a dress. Wear pants or a skirt because you will only be undressing from the waist up and you will be sitting–most likely–in the cover-up top they provide in a group waiting room.

Also, when I signed in, my office offered to send me a copy of my report if I filled out a sheet stating where I wanted it sent. If your office doesn’t automatically do this, make sure you ask for a copy of the report to be sent to you at this point and then remind the technician or doctor during the appointment too. I have to imagine all offices would be willing to send you a copy so you have it for your own medical files, but my office was particularly proactive, offering it before being asked.

My mother came with me, sending an email a day or two beforehand informing me that she would be doing this. She knows me well enough to know that I was internally flipping the fuck out even though I said I was fine going alone. She came with me when they called me back from the main waiting room to the smaller waiting room. The man who came with his wife was asked to remain in the main waiting room. In other words, the space was ladies only. They brought us to a smaller waiting room and asked us to change into the cover-up, leaving our bras and tops in a locker. And then we waited to be called back.

The mammogram is done standing up. You put on a lead apron around your waist. You stand before this huge machine that has a part that looks like a glass shelf. The technician places your breast on the shelf (relax your body as much as possible and don’t try to help her) after adjusting the height of the shelf and then a top plate of glass comes down, compressing the breast like a…boob sandwich with glass bread. A thick boob sandwich with a lot of filling because while I thought the machine would smoosh them down so hard that they would look like Wile E. Coyote’s hands after the Roadrunner runs them over with a car. You know what I’m talking about? When he has to peel them from the pavement? So…no…the mammogram doesn’t compress your boobs like that. It’s…well…

My mammogram sort of felt like a teenage boy who doesn’t know quite what to do with your breasts. He’s just so freakin’ excited to finally be able to tell his friends that he has touched a pair of mammary glands that he is both shitting himself and pushing your boobs at the same time.

You probably won’t be surprised to hear this, but the mammogram, like most tests involving the body, is described on a widely sliding scale of pain from mild discomfort to holy shit and the thing to keep in mind is that the pain factor varies greatly from breast type to breast type (do you have dense tissue or a lot of fatty tissue), life experience (nothing has ever been as painful for me as my HSG–it will forever be my “10” on a scale of 1–10), skill of the technician, tensing of the surrounding muscle, and whether or not you took a painkiller beforehand.

I did opt to take two Alleve an hour before the exam therefore, take it with a grain of salt when I tell you that it was only mildly uncomfortable. I proactively took a painkiller so who knows what it would have felt like if I hadn’t come prepared. I also concentrated on relaxing my shoulders and back. So, some people will probably say that it was very painful and some will say that it was nothing at all because each person will experience it differently.

She set up the machine and compressed the breast and then ran over to take the image. She then pushed a button from where she was standing and the machine released the breast before she walked over. So all in all, the breast was compressed for under 30 seconds each time. It took a minute or two to set up each picture and get the breast where it should be. So the actual discomfort time was quick.

She took two image (one of each breast), pressing down from the top. Then, she turned the machine and took two additional images (one of each breast) pressing in from the sides. Again, it was just mildly uncomfortable (think panting teenage boy). Then she had to take additional images of the lump area because I was having a diagnostic mammogram, even though it was also serving as my baseline, age 35 mammogram.

She gave me a small sticker with a metal dot on it and asked me to place it over the lump. Then she switched the top plate on the mammogram to a smaller plate and took one more image of that small area. That was the only compression that actually hurt. And on a pain scale, I’d place i
t around a 4. Not something I’d like to endure for hours, but not terrible for the thirty seconds the breast is compressed. She removed the sticker and I returned to the waiting room.

A short time later, I was brought back for an ultrasound of the breast. It is exactly like any other ultrasound (well, except the transvaginal ones)–goo on the breast and then the paddle moves around while the technican examines the screen. A doctor then came in to give the all-clear. She could feel the lump, but said that it didn’t feel worrisome to her and the mammogram and ultrasound both came back with the tissue looking normal with no additional growths or cysts in that area. She told me to keep an eye on it and to alert my doctor if anything changed. As long as there were no changes to the lump, I could wait to have my next regularly scheduled mammogram.

I asked her if I could get a copy of my films (this was in addition to the report that will be sent to me in a few weeks) and then waited in the main waiting room for an additional half hour to walk out of the office with them. It’s worth waiting in the office and walking out with the films so that you have them for your file.

Again, my PSA–I know that I stopped focusing on self-breast exams and pap smears during treatments, assuming that since an RE was up in my ladybits that problems would be found automatically. But this just isn’t the case: you still need to do your yearly pap smear and monthly breast exams. Leave a note for yourself on your calendar, hang one of those water-proof reminders in your shower, but do it. And if you feel anything suspicious, be proactive and ask a doctor instead of worrying that it’s all in your head. PSA over.

So that was my first mammogram experience. Add your own notes in the comment section on your mammogram experience. This post will be linked to from the left sidebar under Operation Heads Up for anyone who wants to use it in the future.

Celiac Disease and its Connection to Miscarriage and Infertility
By Mash at The Lucky Life

Celiac Disease and it’s Connection to Miscarriage and Infertility

More and more research is starting to point to Celiac Disease as a cause of unexplained infertility or recurrent miscarriages for some women. Researchers who have studied women with infertility have found that they test positive for Celiac disease-related antibodies at a rate that is ten-fold higher than the normal population. Since it is a disease of the digestive tract, there is not much awareness amongst fertility specialists about the disease, however, the awareness is slowly increasing. This article is particularly aimed at women who are struggling to find answers, and may be displaying some of the other symptoms of this disease.

What is Celiac Disease?

Celiac disease (also known as Coeliac Disease) is an autoimmune disease of the digestive tract, caused by a reaction gluten, a protein found in wheat, barley, rye and oats. When a person has Celiac Disease, their body’s reaction to the gluten causes damage to the villi (tiny protrusions of the small intestine, used to absorb nutrition), and as a result they tend to become malnourished, no matter how much food they eat. Once a person has been diagnosed, and gluten removed from their diet, their digestive tract starts to heal, nutrition starts to be absorbed, and the symptoms usually start to subside.

Some Common Symptoms

Around 1 in 133 Americans have this disease, although it is estimated that 95% of sufferers are undiagnosed. The symptoms vary, classical symptoms are generally digestion related like abdominal bloating and pain, diarrhea, and others symptoms which are frequently ascribed to irritable bowel syndrome. Other symptoms are related to problems with  absorption, such as fatigue, anemia and osteoporosis. Sufferers of other autoimmune diseases such as rheumatoid arthritis and thyroid autoimmune diseases are often found to have Celiac Disease, and in some cases changing their diet to exclude gluten has caused these diseases to clear up or improve. A link has also been found between migraine and Celiac Disease – migraine sufferers are 10 times more likely to have Celiac. Around 10% of people suffering with Celiac Disease have Dermititis Herpetiformis (an itchy skin rash). There are also people who have Celiac Disease with no symptoms at all, they are called Silent Celiacs.

Miscarriage and Infertility

Importantly, recurrent miscarriage and infertility are also symptoms of Celiac Disease. I’ve included some (but there are many) relevant studies with the facts.

• Women with undiagnosed Celiac Disease have a 9 times higher chance of miscarriage than those who are diagnosed and have gone gluten free. Celiac Disease and Pregnancy Outcome PMID:8677936. These miscarriages can happen at any time in a pregnancy and sadly, are often late term miscarriages. There is a suspicion that they may be due to malnourishment of the fetus.

• Some of the further listed atypical symptoms of Celiac disease are: delayed menarche, amenorrhea, early menopause, infertility, impotence, hypogonadism, recurrent abortions, and low-birth-weight or preterm deliveries. Celiac Disease and Reproductive DisordersPMID: 20017709 and Celiac Disease and its Affect on Human Reproduction PMID: 20337200.

• In a population of women with endometriosis, they found 2.5% of the women to be Celiac positive, more than double the rate of Celiac Disease than is found in the general population. Serological Testing for Celiac Disease in Women with Endometriosis PMID: 19400413

Diagnosis

Tests can only be done while gluten is still present in the diet. It’s very important not to be gluten-free when you are going for tests! A mistake that many people make is to cut out gluten, and when their symptoms disappear as a result, to go for the tests. Since they are looking for antibodies, the tests will then probably come back negative. The first step would be some blood tests for antibodies that your doctor might order: Total IgA, IgA-tTG, and IgA-EMA. If the antibody tests come back positive, your doctor will probably order a biopsy of the lining of the small intestine, to check for the autoimmune response. Some people test positive for the antibodies and negative for the autoimmune response, this means that they have a gluten intolerance, and not Celiac Disease. However, many people with gluten intolerance suffer similar symptoms, and they are advised to give up gluten too. It doesn’t make sense for your body to harbour inflammation!

Finally, here is a clip from a woman who suffered 3 miscarriages and went to 23 doctors before being diagnosed, who now works for a Celiac Disease NGO:

References:

• http://www.celiac.com/articles/643/1/Fertility-and-Pregnancy-in-Women-with-Celiac-Disease-by-Michelle-Melin-Rogovin/Page1.html
• http://en.wikipedia.org/wiki/Coeliac_disease
• http://digestive.niddk.nih.gov/ddiseases/pubs/celiac/#wha
• http://www.webmd.com/migraines-headaches/news/20030321/migraine-linked-to-celiac-disease
• http://www.celiaccentral.org/News/News-Feeds/View-Research-News/Celiac-Disease-Research/134/pg–1/vobid–2206/
• http://www.medicinenet.com/celiac_disease/page5.htm
• http://www.celiaccentral.org/Celiac-Disease/Diagnosis-Treatment/33/

Operation Heads Up is well underway. For those who don’t know, Operation Heads Up is the database we’re collecting of personal reactions/points-of-view on procedures, medications, surgeries as well as personal tips to get your through the experience. In other words, everything your doctor can’t tell you because he hasn’t actually tried these things himself. A literal heads up so you know what to expect, what you should bring, what you should ask, etc.

People are also HIGHLY encouraged to add comments (either additional information or just a supportive cheer) on posts in order to get more points-of-view out there. I’ve been grouping all the posts together by making the date the 26th of July (the first one we posted). That way, someone can read all them by scrolling down. Links to these posts are also provided on the sidebar under Operation Heads Up. Click on the link and it will take you to the write up on that topic.

We still have a pretty big list so volunteer volunteer volunteer to do a write-up. Email me at thetowncriers@gmail.com if you’re interested. And people keep adding to the list all the time. Remember, I’m limited by my own IF experience–there are dozens of other tests/medications/procedures out there that we missed out on because we only had the poor egg/no progesterone diagnoses. So keep emailing me things that belong on this list.

Currently up-for-grabs Write-Ups That Need To Get Done (so volunteer to write one)

Basal Body Temperature (how to take it)
IM injections
IUI
IVF (transfer/retrieval)
Hysteroscopy
Semen analysis
Post-coital exam
D & C
Testicular biopsy
Vasography
Varicocelectomy
Oral (Clomid) and vaginal (Prometrium) medications
OPKS (when to use/how to use)
Transvaginal ultrasound
Sonohystogram

By Prairie Anonymous

Why you would be having an MRI?

During the D&C for my 2nd miscarriage the doctor noted that I have a uterine septum. My new doctor booked me an appointment to have Magnetic Resonance Imaging (MRI) of my uterus to get a better look at the septum. Please not this is my description of my Canadian experience.

What to expect

Upon arrival, I filled out a long list of yes/no questions relating to my health history. I had a couple of follow up conversations with the nurse resulting from my answers.

My jacket, valuables, etc were put into a locker. Other patients who attended the appointment with a support person left their jacket and valuables with that person in the waiting room.

I was then asked to change into hospital pants because my jeans had a zipper, but was allowed to keep my cotton shirt on, with bra removed. They told me that if you want to wear your own clothes, you can usually do so, just make sure your clothes do not contain any metal. You need to remove all metal jewelry, so do yourself a favour and leave everything metal at home.

I am not claustrophobic and I was not sedated. I saw other patients who were quite anxious, a normal reaction, and they were receiving intravenous sedation.

When it was my turn, I was taken to the procedure room, strapped into the machine with something over my abdomen. An emergency call button was placed in my hand and I was instructed to squeeze it to stop the procedure at any point. The technician explained that I would be there for about 30 mins and they would be in the room next door and would be providing me instructions through a speaker set up. I was then given hearing protection headphones and I was moved horizontally into the MRI. Both ends of the machine were open and I was able to kind of see the room’s light and some of the space around me.

During the MRI I was instructed to remain very still. Throughout the process there was rhythmic thumping that stopped and started. During the breathing exercises I was told to breath in, breath out, take a short breath in and hold it for about 20 seconds. The technician would instruct me when I could continue to breath normally. The instructions to do this were clearly explained to me through by the technician through the sound system.

As for the MRI itself, I actually enjoyed it. I found the machine & experience relaxing (sort of like acupuncture or tanning beds). I feel like I almost slept for most of it. It was very zen. I know this is probably not the typical experience, but it was how I experienced it.

After about 20 minutes they interrupted my session and the technician and a nurse came into the room. The tech informed me that he had showed my scans/images to a doctor who recommended they use an injectable dye to get a better picture. This was recommended to prevent a second visit and procedure with the injection. The nurse found my best vein, inserted an iv and injected some red stuff and sent me back into the machine for another round of scans.

At the conclusion I was informed that my doctor will have the results in 5-10 days.

My discharge was uneventful. I was taken back to where my clothes were, I changed, collected my valuables and jacket from the locker and I left. I was there for about 90 mins. If I had been sedated I would have required someone to drive for me after the procedure.

Personal tips

One little recommendation. During the MRI you can see your feet. I was wearing a pair of socks that were a gift and it was strangely comforting. I recommend asking your partner, husband or a good friend to go out and buy you a special pair of socks for the MRI. It will keep you connected to them through the procedure and give you something positive to focus on.