October 2008 - Preparation

I went in the later part of October for my Lupron shot. It really didn't hurt at all as it went into my hip. It took a few days before some of the side effects started to set in. I started getting the weirdest mood swings. It was like my heart/emotions and my brain were not connected at all. I would want to just yell at people for no reason. It was sort of like hitting the funny bone where you just can't help but move or laugh. It was in those moments where I was lashing out or starting to cry for no reason that my unconnected brain would be saying "it's just the hormones". But they couldn't quite get connected. Weirdest feeling ever! After about two months of the Lupron, that extreme started to mellow out some. It was still a challenge, but not nearly as bad as the first month or so.

I haven't experienced many hot flashes. I have a few times, but nothing significant. My primary side effect was the mood swings. Also, a bit of weight gain. Between the Lupron and the double BCPs I had been taking, I shot up about 10 lbs in 2 months. That's a pretty big jump for me, considering I didn't change my workout or eating routines.

We had so much preparation to do for this surgery. The Dr gave us a big packet to read through all the risks and things we need to do. We had to consider things like our "Advanced Care Directive" - what my desires are if everything goes south during the procedure. What a difficult thing to do, but we had to face the possibilities and make sure everything was outlined - just in case.

The other risk was the possibility of needing a hysterectomy. My Dr explained that if that was necessary, she'd take only the uterus, leaving the ovaries and fallopian tubes in tact so that I would still have eggs and hormones so that I wouldn't be launched into immediate menopause. That would keep options open in case we wanted to have a surrogate down the road.

There was also considerations with the possibilities of hemorrhaging and needing a blood transfusion. There are always some risks with accepting someone else's donated blood. There is an option to donate your own blood for the procedure, but it can take weeks and weeks to do and process. So, by the time I considered it, we didn't have any time to do that. I just said a prayer and hoped that a transfusion wasn't needed. I also prayed that none of these risks would actually come to pass, but that the surgery would to exactly as planned.

All these things are so so so rare, but they are things I had to face and deal with one at a time. There's always the "what ifs".

Six weeks off work. That's what the Dr ordered. So, I started making preparations to find a replacement for my job - someone to cover for me while I was out. We finally found someone just days before I went out on leave.

I also started all the paperwork for my Short Term Disability with my job as well. So much paperwork to do! So many regulations and rules and things to cover. I won't even get into it all. If you have a specific question, email me and I'll try to help. It's confusing and can vary from state to state.

I sat down to discuss all my "issues" that I'd been internalizing for so many months with a counselor. I can't say it helped a lot because there isn't a lot to do at the time. She basically helped me realize that I have to be a little nicer on myself and wait until all of this is over to "start over" with self-image, etc. Easier said than done, but I am desperately trying to do that.

My Dr called and let me know there was an opening in December if I wanted to take it. I did. Why wait until Jan or Feb when you can do it sooner? Let's just get it over with!

I think I'm as ready as I'll ever be.

September 2008 - Test Results

After about a month of iron doses and the reduction of bleeding, my iron levels finally leveled out back to normal and I started taking just 1 iron supplement pill every day.

Late in September I went in for my ultrasound on a Friday and had an appointment with the OB/GYN Surgeon that the Nurse Practitioner recommended the following Friday. It was in that meeting with the Surgeon that I got the results of the ultrasound and found out what my options were.

The ultrasound showed I had a very large fibroid inside my uterus. Though they couldn't say with 100% accuracy from the ultrasound, it appeared that the fibroid was pedunculated, which means it is actually on the inside of the uterine wall/lining and not necessarily embedded in the uterine wall/lining or on the outside of the uterus.

(Illustration copyright 2000 by Nucleus Communications, Inc. All rights reserved. http://www.nucleusinc.com)

The fibroid was 9cm (4 inches) the size of a large grapefruit and the uterus was about 15cm - the size of an approximately 4 month pregnancy. That's the end of the first trimester, the beginning of the second! No wonder all my clothes were so tight and I had a massive tummy pooch that I couldn't ever seem to get rid of no matter how much I worked out, watched my food, or did crunches/pilates! Everything was starting to make sense.

Just knowing what the problem was helped make it easier to manage, however It was still hard on the ego. I'd seen people eyeing my growing belly, thinking that I was probably pregnant. I know those looks. My husband and I have been married just the "right" amount of time to start having kids, so I'm sure people wondered. Thankfully, no one ever asked me. They did ask my husband though, which I just recently found out. He didn't tell me because he knew what a delicate state of mind I was in at the moment.

I found out from the doctor that the fibroid just two years ago was the size of the kiwi (5cm), half the size of what it became. It doubled in size in just two years! Probably no thanks to the continuous BCP and the lack of attention from my regular Dr. Oh, how I wish she'd followed up on me or explained that the fibroid could grow. I had no idea it could grow. I was clueless. She was the Dr and I trusted her.

So, I sat down with the Dr my NP recommended and she looked me in the eye and said "You're going to need surgery. It's too large to get any other way." The cut-off for a laparoscopic surgery or vaginal removal is a for a fibroid 5cm or smaller, and mine was almost double that size. I was going to need a Uterine Myomectomy. This was the only option if I wanted to preserve my fertility.

At age 27, though I didn't know for sure I wanted to have children, I also wasn't for sure I didn't want to have them. I was far too young to make a decision. For women who know they don't want kids or who are older, the hysterectomy is the best option. There are also other options such as Uterine Fibroid Embolization, but the chances of getting pregnant after a Uterine Embolization is highly rare and not recommended. I guess if I knew I wanted kids, I'd probably go for the hysterectomy.

I asked a zillion questions, hoping there was another option than a myomectomy. But there wasn't. The fibroid was just growing far too quickly and there was a itty bitty chance that the fibroid could possibly NOT be a fibroid and be a cancerous tumor. This is not likely, but better safe than sorry. So my Surgeon recommended getting it out and sending it to the lab to be 100% sure.

The other downfall to having a myomectomy is that if I do become pregnant eventually, the baby will have to be taken via planned C-section 4 weeks early. They do not want me to go into contractions or labor whatsoever. The incision on the uterus can actually burst and put the life of the baby and me into jeopardy. At 4 weeks, they do an amniocentesis to check the baby's lung development to see if they're ready for the real world. If not, they'll push it out one week and take the baby 3 weeks early. It would be considered a high-risk pregnancy. Having the uterus burst during pregnancy is one of my biggest fears. I cannot even imagine what that pain would feel like, much less the fear.

I know many people these days have vaginal births after having a C-section, so I wondered why that wouldn't be an option for me. I asked my doctor about this and she explained that with a full term baby, the uterus muscle is so stretched out and 'thin' at that point, the incision is much smaller. Doing a surgery on a smaller uterus, the muscle is still very thick and therefore, the incision is much larger, with much more weakness. What about if I become pregnant with twins? I don't know. I guess I'll cross that bridge when I get there. That's on my list of things to ask my Dr next time we talk.

Of course, with any full surgery, there a risks. There are risks of hemorrhaging, requiring a blood transfusion. A chance that the uterus was so badly destroyed or bleeding that a hysterectomy was required. But the rewards were deemed greater than the risks, so we went on the books for surgery. She originally said it would be Jan or Feb of 2009 before the surgery would take place.

It makes me angry that my original Dr never did any follow up or explanation. Had she did, I wouldn't be facing the surgery that I am now. A smaller sized fibroid has less-invasive options for removal, but because of (what I consider) her lack of dedication, I have to have the full thing.

In the meantime, she put me on a 3 month shot of Lupron Depot. Lupron is basically an estrogen blocker that can help reduce the size of the fibroid by up to 20% (ish). Unfortunately, that wouldn't be enough for a less invasive surgery for me, but it would help her get it out once she was in there. And, also, it would mean that I would stop bleeding, which was enough for me. As an estrogen blocker, that means I would be thrown into a temporary menopause of sorts for those three months. Including mood swings, hot flashes, etc. Heh. This should be interesting.

August 2008 - Seeking Help

I finally said "enough is enough"! I wasn't pleased that my regular OB/GYN had told me we had to "manage the symptoms" and wasn't planning to do anything else for me. So, I talked to my sister who recommended her OB/GYN Nurse Practitioner who she described as compassionate and caring. In my emotional state, I decided it was that environment I needed to go to seek help. So, I made an appointment.

I went to her and she immediately said I needed 1) a new ultrasound to see the size of the fibroid, 2) a consult with a Dr/Surgeon to see if I'm a candidate to take care of the fibroid (which she assumed was the culprit) 3) a blood test to check for anemia, and 4) a visit with a counselor to deal with my escalating emotional breakdown and depression over this issue.

1, 2 and 3 I could handle, but 4 was a bit much for me with my pride. But I looked at it as a traumatic situation I needed help dealing with. Not that I was an overall depressed person as a whole. So, I made all the appointments she suggested.

She also gave me a new birth control pill to try - something that was a bit stronger and she recommended taking 2 BCPs a day to stop the bleeding. It worked temporarily, but when I went back to 1 pill a day, the bleeding started again. There are some risks of taking 2 pills a day for an ongoing period of time. One is blood clots, so I had to keep an eye on my legs for pain, etc. Also, there is a possibility of having the fibroid grow. She explained that fibroids are generally fed by estrogen and the BCPs could possibly be making the fibroid grow. But I figured the risk was less than the reward of not bleeding. So, I went back on 2 pills a day until I had my meeting with the surgeon. It was just 3 weeks out, so I figured it wouldn't kill me.

The blood test also came back that I was severely anemic. My HGB was 9.4 (standard range: 11.5 - 15.0) and my Hematocrit was 29.8 (standard range is 34.0-46.0). My Ferritin, which is the store of iron (like the "savings account", she described) was at 1 (standard range is 22-291). Come to find out, I was just a few points away from needing a transfusion! I started immediately on iron supplement pills - 3 doses a day.

May to August 2008 - All Hell Breaks Loose

I started back on Yasmin, hoping it would stop the bleeding. It seemed it worked temporarily and I had some relief for a week or so. But it was just playing with me. I started having increasingly heavy bleeding with large clots for 2 to 3 weeks at a time. The clots were anywhere from a walnut to a golf ball size - pretty large in my mind! And it wouldn't stop. I bled 3-4 weeks at a time with only a week or just a few days of no bleeding. And it was heavy. Very heavy. I would sometimes bleed through a pad or tampon in just 15 mins to an hour.

I have cleaned up more messes on the floor, bed, my cloths, etc than I care to even admit or discuss. Each time, I would put in a super absorbant tampon plus a pad on. And each time, I would bleed through both. I can't begin to describe the depression that started to settle over me. Bleeding. Bleeding. Bleeding. Just the mere thought of more bleeding or changing my tampon/pad yet again would practically bring me to tears. This girl who is largely unemotional had hit a bump in the road that was too difficult to go over or around. And the pain of that fact crushed me.

There were actually 2 weeks of time when I didn't leave the house. I couldn't. I had to stay close to the bathroom. Thankfully, I was able to work from home, so I managed to work during that time. But any extra activities outside the home were out of the question.

It was far too much to handle for me or my husband. It was too much to put on my girlfriends who tried to understand, but they really couldn't fully. They all tried their best to understand and sympathize, but unless you're in the shoes of someone with symptomatic fibroids, you really can't understand completely.

Even on top of the bleeding, I had to use the restroom to relieve my bladder frequently. The enlarged uterus was pressing on my bladder. It really was as if I were pregnant.

I was familiar with every restroom in every place we went. I had to. I was going all the time to change or clean up. It was awful.

As you can also imagine, sexual activity was slim to none during these four months. With such a surplus of bleeding, it was practically impossible to do anything. Not good for our relationship, self esteem, etc.

November 2006 - The Initial Diagnosis

Cramping started to become a bit of an issue for me the past few months. With each cycle, the cramps got a little worse and worse. Mainly the first couple of days of the cycle. And bleeding was a bit heavier than normal, but nothing significant enough to cause concern. Until one night.

I woke up around 1am with such painful cramps that I could hardly stand it. I was curled into a ball on our bed and woke up my husband for commodore and comfort if nothing else. I moved from bed to couch to pacing and back. It was more pain than I had ever experienced before in my life. So much that I could hardly make coherent sentences.

It got bad enough that I actually started throwing up. It was at that point my husband decided we needed professional help and he called the advice nurse at Kaiser to get some help. The lady on the phone determined it was bad enough for me to go to the emergency room.

They drugged me up really good on some morphine and the doctor came in to check everything out. They couldn't see anything particular wrong with me that evening, so they scheduled a follow-up appointment with my regular OB/GYN.

My OB/GYN discovered that my uterus felt enlarged to the touch and sent me for an ultrasound. There revealed my fibroid - a non-cancerous tumor in the uterus. I was 25 yrs old at the time - a fairly young age to have a fibroid, but not completely unlikely. At the time they didn't tell me the size, potential for growth, etc. And I didn't know to ask. I didn't know better. Oh how I wish I knew more at that time. It may have saved me from additional hardships down the road!

My Dr then wanted to do an internal exam, a hysteroscopy, to see if the fibroid was in the uterus or on the outside, etc. This process basically fills your uterus with fluid and the Dr puts a hysteroscope - a small camera with light - into the uterus to look around. During the exam, she found no fibroid coming through the lining/wall, but she did see some odd looking areas. She did a biopsy of the uterus to make sure it wasn't cancer. That biopsy was so intense, I ended up holding my breath and passing out on the table. Not fun. Thankfully, the biopsy came back negative.

So, that left us with just the knowledge that I definitely did have a fibroid and that that we would start managing the symptoms (i.e, cramping) with regular Ibuprofen during my menstrual cycle. I wasn't thrilled about being so medicated, being such a 'natural' type person, but anything is better than that obnoxious cramping that will be forever burned into my mind. She also recommended that I take continuous birth control. She let me know there were no side effects and it would be fine for me to take continuous without any repercussions. Continuous birth control was actually kind of nice since that meant I only got my period every few months. I was taking 3 packs of pills before I took the 'water/placebo pill'.

If you've been diagnosed with a Symptomatic Fibroid - What to ask:

• What size is it?
• Is it growing? (if so, how quickly)
• Should we treat it now?
• What are my options for treatment at this time?
• What options for treatment will be available if we wait?
• How will we monitor the growth or appearance of additional Fibroids in the future/over time?

My tip... Research. Research. Research! And get a second or third opinion. It's your body. Your right.

A great article from Kaiser on fibroids

The Background

I'd never been one to have difficult or abnormal menstrual cycles. Besides them being a bit sporadic and getting my period when I was just 8 1/2 yrs old, they'd be fairly mundane. I never had the obnoxious, debilitating cramps that my friends experienced where they had to stay home from school with heating pads and lots of Excedrin. No, not me. And I considered myself lucky.

In preparation for my upcoming marriage, I started using Yasmin Birth Control pills at the beginning of 2005. Those lovely pills regulated my cycle and reduced the bleeding significantly. It was fabulous.