Monday, December 29, 2008

November 2008 - More Trauma & My Doctor

A couple of days after the Lupron shot, I started bleeding again. Since you can't be on BCP while on Lupron (they cancel each other out, essentially as BCP puts estrogen in your system and Lupron blocks it) and that was the only thing preventing me from bleeding, I started bleeding. I wasn't surprised. After having the Lupron, they say you will have one last 'period' about two weeks later and then no or very light bleeding the rest of the three months. In the meantime, we had to use alternate form of BC - condoms.

In typical form, my bleeding came with a vengeance for a full week. It was full throttle with clots, can't leave home, etc. It was no fun, but at least this time I knew it was temporary, thanks to the Lupron.

A few days into my bleeding episode, I passed some particularly large clots. I wasn't feeling real well and was working from home that day. I went to the restroom to change my pad/tampon and sat down on the toilet. I started feeling incredibly woozy. That wooziness got worse and worse. I eventually laid my head down on the sink next to me and tried to breathe through it. I've experienced this kind of dizziness before and I typically can just deep breathe and pull myself together enough to let it pass. It didn't quite work this time.

Next thing I knew I was waking up pushing myself off the floor and ended up up sitting on the edge of the bathtub. I was sitting there not intentionally. In my clouded state, I thought I was pushing myself back onto the toilet. In a split second, I realized I wasn't on the toilet, but on the tub. So I jumped back over onto the toilet and just sat. Fear rushed over me when I realized I had just passed out and no one was home. I broke out into a cold sweat.

I cleaned myself up as much as I could, all the while still very dizzy and gripped the walls and door jams as I wobbled into the office for my phone. I called my husband who works about 10 mins away. I squeaked out that I had passed out and was scared and could he please come home immediately. He dropped everything and rushed home. In the meantime, I slowly dragged myself to the nearest couch and laid down with him on the line.

When he got home, he helped me call the advice nurse who after a zillion questions felt I was okay for the time being, but she did want me to go in to see a Dr. There was an appointment with my original Dr (the one who didn't follow up with me and whom I was slightly annoyed at). But I wasn't in any position to be picky. So, that afternoon, we went in. It just so happened that my new Dr/Surgeon had called me to verify some surgery dates a bit after the passing out episode and I filled her in on what was happening. She asked me to have the Dr looking at me to verify that the fibroid hadn't started to separate or something like that and to run a blood test to check for anemia again.

When I went in for my appointment, the Dr seemed to think everything was okay. I went for a blood test - "stat" - and they requested I wait for the results while I was there in case I needed a transfusion. It came back low but not significantly. The bleeding had significantly reduced by then. She seemed to think I might have a sensitive cervix and was possibly passing a large clot at the time. It seems I have a pattern of passing out when the cervix is traumatized, like when I had the hysteroscopy a few years ago.

My original Dr saw that I had a myomectomy scheduled with my New Dr and I detected a slight undercurrent of annoyance from her. She was getting ready to go on pregnancy leave, so she used that along with the fact that the New Dr was going to know my uterus best for future surgeries/pregnancies/C-sections and decided to turn me over to her as my primary Dr. Thank God! It worked out perfectly. It also worked out that my original Dr was able to give me a second opinion on my scheduled surgery, also. She agreed that the myomectomy was the best route for me if I was planning to have children in the future.

Another thing I wanted to mention about my New Dr/Surgeon is the fact that she is incredibly knowledgeable. I found out from her assistant that she used to work under a Fibroid Specialist for 3 years in her past experiences. She also wrote articles on Fibroids. This made me feel so many times better in putting my trust and confidence in her.

Also, everyone I spoke to around the Dr's office and hospital all said "Oh, she's your Dr? She's great! She's one of the best. She's mine too!" My cousin, who works in the business side of the hospital even said she was great and was three times over her quota of patients. Somehow I managed to become one. I feel like God definitely had His hand in working this out for me. I really do feel like I'm in good hands. And when I talk to her, I feel like she really cares. That's a good thing.

Sunday, December 28, 2008

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.

Saturday, December 27, 2008

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.

April 2008 - Bleeding Through

In the middle of April, I missed one BCP by about 6 hours, something I'd done with Yasmin many times before with no problems. I just doubled up on my pill the next day according to the standard BCP procedure and instructions. That very day, I started bleeding, heavily for about 10 days. I'd never had this problem with Yasmin before and with an upcoming anniversary trip planned with my husband. I didn't want to be bleeding and I assumed the Levora was the culprit. I took things into my own hands and decided to go back to my Yasmin since I had a some refills left.

January 2008 - Birth Control Switch

With the increased cost of my co-pay for health insurance at the beginning of the year, the price of my birth control pills (BCP) also increased. Yasmin was now costing me $50 for three month packs, only saving me $12 from the full retail price! Due to that fact, I decided to get off the brand name Yasmin BCP and try a generic brand. I contacted my OB/GYN Dr and requested a switch to something similar to Yasmin. She placed me on Levora. It seemed to be working in the same fashion as Yasmin with no problems or concerns.