A Journey through Treatment and Pregnancy

I am including the definition of endometriosis because it is in a way similar to adenomyosis, but is often mistaken as the other by patients whose doctors do not give them a sufficient explanation.

Endometriosis: a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere in the body. Endometriosis lesions can be found anywhere in the pelvic cavity: on the ovaries, the fallopian tubes, and on the pelvic sidewall. Other common sites include the uterosacral ligaments, the cul-de-sac, the Pouch of Douglas, and in the rectal-vaginal septum. In addition, it can be found in caecarian-section scars, laparoscopy or laparotomy scars, and on the bladder, bowel, intestines, colon, appendix, and rectum. In rare cases, endometriosis has been found inside the vagina, inside the bladder, on the skin, even in the lung, spine, and brain. The most common symptom of endometriosis is pelvic pain. The pain often correlates to the menstrual cycle, but a woman with endometriosis may also experience pain that doesn’t correlate to her cycle. For many women, the pain of endometriosis is so severe and debilitating that it impacts their lives in significant ways. Endometriosis can also cause scar tissue and adhesions to develop that can distort a woman’s internal anatomy. In advanced stages, internal organs may fuse together, causing a condition known as a “frozen pelvis.” It is estimated that 30-40% of women with endometriosis are infertile.

The following week I called the GYN office to get my results. My regular doctor wasn’t in, and I was desperate to get some answers, so my doc’s colleague called me back with the results.

The following are the results exactly written by the doc on staff at the lab:
Clinical History: The patient has pelvic pain and cramping. Last menstrual period is 11/11/06
Technique: Transvaginal imaging is utilized. Static images are provided for review
Findings: The uterus measures 8.7 x 5.2 x 7.1 cm. The uterus is retroverted, and the myometrium is heterogeneous and bulky. The posterior myometrium is more thick than the anterior myometrium. Its appearance is suggestive of adenomyosis.
The endometrial stripe measures 1.1 cm in diameter. There is a small endometrial cyst measuring 0.5 cm.
There is a left anterior subserosal fibroid measuring 1.8 x 1.7 cm. There is a left mural fibroid measuring 1.2 x 1.5 cm.
The right ovary measures 4.4 x 2.3 x 2.5. The left ovary measures 3.9 x 3 x 2.5 cm. There are multiple follicles in the left and right ovary.
There is a small amount of fluid in the pelvis.

Impression: The uterus demonstrates bulky asymmetric myometrium which is suggestive of adenomyosis. Two small fibroids are noted, and there is a small endometrial cyst identified as well. Recommend further evaluation with Pelvic MRI obtained without gadolinium

Mind you, this information was faxed to me nearly a month later. What my doc’s colleague told me was that I had Endometriosis and that he thinks I should go on Lupron. As you can see above, the results shown above clearly speak to Adenomyosis, and not so much Endometriosis.

So I spent the remainder of the week totally freaking out thinking it was one thing, until I actually spoke to my doc who told me that the size of the Endometriosis was about the size of a pea. He recommended I get a pelvic MRI right away to rule out Endometriosis and back up the diagnosis of Adenomyosis.
I called the lab right away for an appointment.

The one thing that scared me about the idea of an Intravaginal Ultrasound was that they were going to put something inside of me to try to get some answers to the pain I was going through. I wasn’t too happy about the “intravaginal” part. I couldn’t exactly understand why they just couldn’t lube up my tummy and examine me that way. I’ve had a cardiac ultrasound performed and they certainly didn’t stick the wand down my throat to get closer to my heart.

Since I was really nervous about this whole thing, my mom was sweet enough to take me. Although, they wouldn’t allow her in the examination room, it did make me feel better knowing she was only a few yards away.

Now for the exam itself:
They only have you strip the botttom half of your clothing and give you a gown to put on (thankfully, it was only the bottom because it was mighty chilly in the examination room). Then the technician had me insert the “wand” inside of myself (I guess they have the patient do it because they know their own body). Afterward the technician takes over and points the wand in different directions while the information is recorded and the technician circles areas that are designated “questionable.” The exam itself did not take more than 20 minutes, but when the tech pointed that darn wand in certain directions it made my uterus sore and it lasted throughout the remainder of the day.

After the exam, I tried to beg the technician to clue me in on what she had seen. Unfortunately, she wouldn’t tell me anything, so I had to go home wondering until I could get an answer from my GYN the following week.

When I thought everything was right in the world. My next cycle showed up on Saturday November 11th. Everything was fine, and not a pain in the world, so I went out to visit family.

While I was with family, the cramps started, and began to become more intense. I had forgotten my manna Ibuprofen at home, so I took . . . get ready . . . 5 . . . that’s right, I said it . . . 5 over-the- counter generic Ibuprofen (and for anyone who knows this, there is a BIG difference between 800mg of prescription Ibuprofen and 1000mg of over-the-counter Ibuprofen | the over the counter version is NOT as potent). This worked long enough for me to get some friends to Astoria, Queens (if you’re looking for killer Greek food outside of the Mediterranean, then Astoria is the place to be), and home to take my manna Ibuprofen. And . . . since I thought it was just cramps, I got out the trusty water bottle my mother had brought over for me the month before, and proceeded to curl up on the couch with the hot bottle on my tummy.

Guess what? IT DIDN’T WORK!!! With my boyfriend’s help I was able to manage, and didn’t have to move much, but the following day, I was on the couch the entire day and barely made it up. I was suffering from the worse constipation on the planet on top of the intense cramping that just . . . wouldn’t . . . STOP!!!!”
That’s it,” I told myself. “I gotta get to the GYN.” So I dutifully made an appointment that Monday for the following Tuesday (GYN’s are very popular and don’t have enough open slots, don’t hold enough office hours, or both). All was good in the world, I had just made an appointment with my GYN, and there was nothing else to worry about. Right? Well, I started to notice that the discharge was changing from the regular red to a nasty brown color (and no I don’t mean that dried blood look it can get either). By Friday, that was all that was coming out of me, so I totally freaked, but managed to get my doc to see me for a quick exam and to take samples. Luckily the discharge was not coming out of my uterus, but he cleaned the vaginal cavity with a betadine and distilled water solution. Then my doc sent me home and told me to come back for my regularly scheduled appointment the following Tuesday and he’d have the results.

The following Tuesday, I went to my GYN for my appointment. He told me that the test results showed absolutely nothing wrong. No infection, no bacteria, NOTHING. That was good and made me happy. So I proceeded to explain the situation with the growing pains during my menstrual cycle. When he examined my uterus, I nearly jumped. The pain was sharp and lasting. I guess my doc didn’t like what happened, so he gave me a prescription to get an Intravaginal Ultrasound . . . and told me to make the appointment right away. As soon as I got to the office I made the appointment. Oh, and remember the jolt of pain I had during the examination? Well I had a dull pain for the remainder of the day as a nice reminder of things to come . . .

No one likes to wake up for work, but there’s something about Friday’s that makes it okay. So I’m getting ready for work, my usual routine; up, shower, feed the cat, make coffee, cigarette, computer, dress, hair, computer, cigarette, drink coffee, brush teeth, finish up, then go to work. Ooooo so much fun.

Well this particular Friday morning, it’s the day before my cycle is scheduled to actually start. I’m doing my hair and I start to feel the usual cramping, so I run over grab my manna of Ibuprofen, drink it down, and continue with my hair.

Then it hits me like a crazed man running a knife right above the pubic bone. It is the worst pain I have ever felt my entire life. I’m doubled over, and I can’t stand up. “I can do this. This is nothing.” That’s all I said to myself. I’m 32 years old, and now I can’t deal with this pain after 20 years of going through this every month? COME ON!!!

Oh but my body was dead serious. There was no way I was going to make it to the office, let alone leave the apartment without literally falling down and maybe passing out.

This next part I remember in particular because I thought it was so ridiculous. See they’ve been constructing an 11-story building right outside of my window since around the time I moved into this place in early March, 2006. The noise from the construction was so loud that you couldn’t hear over the phone let alone anything else. So when I realized I couldn’t make it to work and had to call the job, I had to go into the closet, doubled over, trying to dial the phone and not fall on the floor. I somehow managed to leave not one message, but two, basically sending out the word that Sunshine was not going to get in that day.

After making my calls, I lay down on the couch, curled up and just wished the pain away. Eventually, after about an hour, the knife like pain subsided, and I was left with this dull throb. In between bouts of napping and pain, I kept wracking my brain, trying to figure out what had gone wrong. Had my manna Ibuprofen expired? Did a placebo manage to find its way into my bottle?

I remember just staying on the couch all day. Watching television, falling asleep, ordering my favorite dish from the Columbian restaurant. I know eventually my parents came over when they heard what happened. They said I looked like $h!t. My mom was concerned and told me to call the GYN the following week. I told her I would but I forgot.

My cycle started the following day. And guess what? I just had my normal cramping. So I convinced myself it was a fluke, and never called the doc.

I was 12 years old the first time I got the monthlies. I was devastated. I didn’t want to be a “woman” yet.
But no one told me about the pain. I don’t even think my mother understood the amount of pain I would go through with cramping, every . . . single . . . month. My stepfather’s idea was that one had to suck up the pain, and don’t be a baby . . . so I did.

When I was 19, I was up to taking 8 - 10 Tylenol every 4 - 6 hours just to ease the pain. Then a few years ago, my mom introduced me to prescription Ibuprofen. True manna when it comes to menstrual cramping, I kid you not.

Over the years, I learned a few things about heavy and painful menstrual cycles:
1. If you do at least 30 mins of cardio and about 20 mins of universal weights 3 times a week you reduce the amount of bleeding and cramping, and instead of 7 days it can cut down to about 5 or less
2. If you are clinically overweight for your body type, you can suffer more painful and heavier bleeding

But no one prepared me for what happened in Mid-October 2006 . . .

As defined by the great Wikipedia: Adenomyosis is a medical condition characterized by the presence of ectopic endometrial tissue (the inner lining of the uterus) within the myometrium (the thick, muscular layer of the uterus).