A Journey through Treatment and Pregnancy

Thankfully I work for a large corporation that allows employees to choose from approximately six different types of insurance coverages. When I was first given this option of choosing, I chose the most expensive coverage in order to always have my options open to me. It was a good thing I did too, because the coverage I had chosen allowed me to receive fertility treatment, 6 IUI attempts and 3 IVF attempts as well.

At one point in early December, I received a call from someone in billing at the fertility clinic. Apparently, I had to call my insurance company to request fertility treatment. I had no idea I was supposed to do this, as all other types of treatments and doctor’s appointments did not require I call for “permission.” Well, no harm in just picking up the phone, right?

Upon calling the insurance company, I was transferred to a special department dedicated to fertility treatment and such. I explained to the nurse that I was ready to begin the process for IUI and needed clearance for the procedures. “No problem.” The nurse said. “I just need to ask you some questions.” “What is the name of your partner?” “Umm . . . I have no partner, I’m single and decided to opt for becoming a single parent.” <RED FLAG> Now the nurse stopped, and asked me why. I explained my condition and that I was now ready to try to have children. I also explained I had been going to the fertility clinic to evaluate and search for avenues of treatment for my condition (adenomyosis, for those of you new to my blog) since January of 2007, and that I have no time to look for Mr. Right while my chances of becoming a mother may be dwindling.

The nurse stated they would have to evaluate my request further in regards to my reasoning for wanting to go through this method in trying to get pregnant and also needed to speak with my doctor to find out the specifics of my condition and how it is related to fertility and treatment of such. I was practically crying on the phone. How is it fair that I may be denied using IUI or IVF because I’m single?

Once I hung up the phone, I was in tears.  The worst part of it was the fact I was at work, sitting at my desk in my not so private cubicle.  I didn’t want to get up to go to a more private location for fear of people seeing me in that state.  While in this state, a co-worker who sat diagonally across from me came by to ask me a work related question.  I refused to turn to look at her while we were speaking, but she heard the stress in my voice and asked me what happened.  I just broke down and told her what had happened.

I can’t remember if the insurance company called me the same day or the next, but either way they called me to inform me I was approved for coverage and I could move forward.

So I began moving forward with getting ready for IUI . . .

With all of the questions on whether or not Birth Control Therapy for the treatment of Adenomyosis, I have to say that aside from this site, I was happy to be somewhat of a positive test case and urged my doctor to allow publication of my treatment if it would help other doctors make similar choices for their patients.

For several months I continued the birth control therapy.  It was great!  My periods were not heavy, but most importantly, they were not painful.  Of course I still carried the prescription naprosyn in the event the birth control failed me, but I didn’t have to make the change which made it all the more important for me.  I began to realize I would more than likely have to be on birth control therapy for the next 15 years or so, and to be honest, I didn’t mind.

Going to the 2nd appointment with the fertility GYN had me just a bit nervous. I had gotten the results of the endocrine test over the phone (my ovaries are releasing properly), but I couldn’t get the results of the hysterosalpingogram over the phone.

By the time I made it to the 2nd appointment I was pretty nervous and somewhat afraid.
1) The doc told me that his colleague viewed the MRI results, and that the results were accurate (it’s nice to have a 2nd opinion).
2) The results from the hysterosalpingogram showed some scar tissue in my fallopian tubes.

The fallopian tube test came back with some information that wasn’t too normal, but not terrible. The test showed that the fallopian tubes, at least one of them had blockage from scarring after an infection I had as a teenager. The doc basically said when I’m ready to start trying for children I should have a laparoscopy to help clear up the passageways. When I do become pregnant I would then have to be monitored to be sure I don’t suffer an ectopic pregnancy (this is when the fertilized egg implants itself outside of the uterus (normally the fallopian tube).

To try to slow the spreading of the adenomyosis, the doctor suggested Continuous Birth Control Therapy in order to “attempt” to make the uterus quiescent. Layman’s terms? The doc wants to treat it by putting me on the pill for at least 6 months, and then take another MRI image to see where my body stands. On this treatment, I would continuously take the pill and not take the customary 7 days off. Therefore no period. Sounds cool right? When the notion scared the crap out of me because there are so many issues with being on the pill . . . and not having my period sounded . . . well . . . unnatural.

Adenomyosis
Originally sited on haveababy.com - link no longer exists
A condition in which the endometrial glands grow into the uterine wall, creating a spongelike effect; can be associated with poor uterine linings. This condition is sometimes associated with heavy, painful periods and uterine enlargement.

The information from the great “Wiki” is too much to include, so I strongly suggest you click here to see what has been written.

I distinctly remember that I had a 2+ hour meeting the day my GYN was going to call me with the actual results. I had told my boss about what was going on, so she was well aware of the fact that I was going to have to walk out of the meeting at some point if/when my doctor called.

Sure enough, about 3/4 of the way through my meeting, I got the call. My heart was beating so hard, because I didn’t know what to expect. My biggest fear is not being able to have children, and I was afraid my doctor was going to tell me I had a 0.00000001% chance of ever having children.

What my doctor said was almost exactly what the results stated (of course I didn’t find that out until later, but it’s true); confirmed Adenomyosis diffused over 70% of my uterus. What does this mean? The simple explanation of “diffused” means “fanned out” or “not concentrated.” The bad thing about diffused means that it covers too much ground. If the adenomyosis were concentrated, the doctor’s could have given me an operation to remove the diseased portion and sew everything back up. However, because it’s diffused and covers too much, it cannot be removed, only treated.

After the doctor gave me the results I asked him what my chances were, and this is what I love about my doctor; his honesty. He told me that he is not a fertility expert and felt very strongly that I should get in touch with the Women’s Fertility Clinic in Midtown Manhattan to get real answers to my very real questions. He gave me the number of the person he usually sends his patients to . . . and so I called her . . .

History: Prior transvaginal ultrasound obtained from 11/30/06 demonstrated heterogeneous asymmetric myometrium suggestive of adenomyosis.

Technique: MRI of the pelvis is obtained utilizing T2 weighted sagittal, coronal, coronal HASTE imaging, oblique T1 weighted axial imaging, T2 axial and T1 weighted VIBE coronal axial imaging utilizing Tesla Siemens magnet.

Findings: The uterus is retroflexed measuring 5.3 x 7 x 8.7 cm in AP, transverse and craniocaudal dimension. The junctional zone is seen to be thickened posteriorly compatible with the presence of adenomyosis. This focal area of posterior thickening measures approximately 2.8 cm in thickness extending over a 4.5 x 5 cm portion of the posterior uterine wall. This area is best seen on coronal image 14 of series 3 and axial image 15 of series 4.
The right ovary measures 3 x 2.4 x 3.3 cm. The left ovary 2.6 x 2.8 x 4.2 cm. There are multiple small follicles noted in both right and left ovary. There is a small lesion demonstrating intermediate signal within the left ovary which demonstrates mildly increased signal on the T1 weighted sequence measuring 1.2 cm in diameter which likely represents a hemorrhagic cyst.
This lesion is new since the prior exam.
There is a small amount of free fluid noted in the pelvis.
The urinary bladder has normal appearance.
There is no evidence of lymphadenopathy within the pelvis.
The osseous structure is intact.

Impression: Posterior uterus adenomyosis.
Small likely benign hemorrhagic cyst noted in the left ovary

The most common use for Lupron is to stop the growth and progression of Adenomyosis, Endometriosis, and Fibroids. Taking a six-month regimen of this medication stops a woman from having her period completely during the time she is on the meds. Sounds great right? Well because the medication puts you on something similar to early menopause, hot flashes are one of the more common side effects. Still sound great? Well here’s another one for you: Lupron effects the density of your bones, making a woman permanently more prone to Osteoporosis. Oh, and did I tell you that some blog sites have women indicating that the hot flashes never really ended after they finished taking the Lupron?

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.

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.