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My Journal

April 1999

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Thursday, 1 April 1999

I have lost a lot of weight post-UAE. Around 45 pounds so far without even trying. . . the nightly workouts that I'm able to do now has helped a great deal. But nothing could have prepared me for the following.

I've been working really hard on a training workbook for a presentation I was scheduled to give this afternoon. My first presentation at this new company. Normally, the dress code is extremely casual (blue jeans & t-shirts) but, since I was going to be training in the corporate office building (where the President and VPs of the company work), I thought I would dress nice.

I whipped open my closet this morning and took a gander at my business suits and dresses--all size 18+. Oh geez. What in the world am I going to wear--nothing fits! I'm a size 10 now. . . Well, I settled on a black dress made out of a gauze-crinkle material that could be tied back in the back so that even though it was way too big, you couldn't really tell. The only problem was--you could sort of see through it from the waist down (the top has a jacket to it). Okay. Well, I own half slips so it shouldn't be a problem, right? So I put on a black silk half slip and notice that it fits a little loose--but, overall, it seems like it will work. Okay, I'm all set for work so off I go.

An hour later I'm walking down the aisle from my cubby to a co-worker's and suddenly I start having trouble walking. I stop. Look down. My slip is laying on the floor around my ankles and I can't take another step without either pulling it up or stepping out of it--and pulling it up really isn't an option! Apparently the slip was bigger than I thought. . . thank goodness today was April Fool's day--my co-worker and I laughed ourselves silly. The image was truly hilarious. I think it's time I went shopping for some new clothes. . . :)

Friday, 2 April 1999

I post the April Fool's Day story to the uterinefibroids list group and get a number of emails in return asking me why I've had so much weight loss post-UAE. I explain, to the best of my abilities, with the following.

Weight loss was rather unexpected and I am not really sure yet as to why it's occurring. My supposition is that it is a combination of things.

  1. My fibroids were HUGE--I looked 6-7 months pregnant. I don't anymore. My internist speculated that I've lost at least 15 pounds in my uterus. (She also told me that my uterine fibroids were the largest she had ever seen and that she was quite concerned about me. Although she is still uncertain about UAE, she was glad that I had done something about them. She wanted me to see a gyn who's a friend of hers but when I asked her what she thought his recommendation would be, she grimaced and said "hysterectomy." I told her no thank you.) The fibroids have shrunk significantly.

  2. I was prescribed Provera (because of hyperplasia that was discovered with hysteroscopy biopsy) at the same time as the UAE. Provera has *wonderful* (read: sarcasm) side effects. Including glucose intolerance. My cravings for sweets died instantly and, in fact, my intolerance was so strong that I couldn't even eat fruit. I'm told that not many women experience glucose intolerance with Provera--most get bloated and gain weight and a whole host of other things. Provera killed my appetite, my cravings for sweets, AND made me nauseous all of the time. Not a good method for weight loss. But, it helped my hyperplasia as I received a clean bill of health with my last biopsy.

  3. Post-UAE I had a lot of energy and could physically do things that I couldn't previously. I used to come home from work and plop into bed at about 6 p.m. every night. Now, I go to the gym for an hour or so. Big difference. The workouts have given me energy, improved my physical condition, contributed to tightening up my abdomen (where shrinking fibroids were leaving a lot of sagging skin), and, overall, improved my mental ability to cope with everything that has occurred. Also, I had (and still have frequently) horrific lower back pain. All that uterus pressing pretty hard on nerves that just couldn't deal with it. Working out has begun to strengthen my back and abdominal muscles and has reduced the amount of pain that I have.

  4. My uterus has always done weird things to my eating habits whenever a major event has occurred to it. You know--the pregnancy thing with the food cravings kind of thing. With each pregnancy my eating habits changed significantly. Food I hated previously suddenly smelled wonderful . . .or, food I've always loved taste like uck suddenly. . .or, just plain old cravings for certain things. My last pregnancy I survived entirely on baked potatoes, broccoli and tomatoes--nothing else--breakfast, lunch, and dinner--for MONTHS! It was weird. Okay. So this is kind of a weird thing. But, there must be some connection to appetite from the uterus or the hormones connected because appetite changes are extremely common with pregnancy. I don't know.

So. It was probably a lot of things. These few items plus probably some things I'm not aware of. I really don't know. Oh well. I'm happy. I'll take the loss. :)

Thursday, 29 April 1999

It's almost the 6 month mark post-UAE (November 2, 1998) and I have an ultrasound, check-up with Dr. Broder, and an "in-between" appointment with Dr. Goodwin scheduled in Los Angeles today. I figure it will take most of the day and leave work around 11:45 for the 1 p.m. ultrasound. I figure correctly. I don't return home until 7 p.m. I prepare the following self-assessment beforehand and print out 2 copies--one for Goodwin and one for Broder.

Bulk of fibroid HUGE
Ultrasound report shows:
Uterus: 20.1 x 10 x 11.8 cm
Primary Fibroid: 11.9 cm
Still significant but shrinkage noted by gyn. From 20-22+ weeks to 16-18 weeks in size. Although still quite large, significantly smaller to me.
Ultrasound report shows:
Uterus: 17 x 8.9 x 10.7 cm
Primary fibroid: 8.9 x 5.5 x 7.9 cm
Bleeding During monthly period only. Clotting. Heavy. Just about own stock in tampon/pad market… Not reduced by UAE. Bleeding continues and is now occurring "off" cycle as well as on. First normal period at month 5 post UAE. Lasted 5 days, light flow, no clots. Month 6 the same. Cramping is, however, extensive.
Back pain Excruciating. Debilitating. Living on painkillers. Narcotics and OTC drugs. Whatever I can get. Still significant. No longer 24/7. Still present in excruciating levels but less frequent. Generally controlled through Motrin. "Creaking" in lower back quite common along with the feeling of knotted and pulled muscles.
Sex Possible. But, barely. Relieves back pain. Amazed that uterine orgasms continue even with the size of my uterus. Irregular bleeding begins post-sex in June '98. Libido high. (Possibly higher than pre-UAE.) Sexual "feelings" nonexistent, however. No orgasms of any kind. Feels "dead." Sometimes it's "almost" and then nothing. Extremely unhappy and angry. Libido still high. Some improvement in "feelings." Clitoral orgasms return but require significant effort to achieve. Uterine orgasms nonexistent. "Dead weight" in the abdomen. Also have noticed complete "disconnect" from stimulation of the nipples to any sexual feelings whatsoever. Pre-UAE, stimulation of nipples resulted in uterine contractions that contributed to overall sexual pleasure and uterine orgasm. Some general depression re: this topic. No longer discuss with too much detail with spouse. He wants to "understand" -- but still believes there is something he can "do" that will improve my "feelings" in this area. He intellectually "gets it" but subconsciously doesn't accept it. On a scale of 1-10, clitoral orgasm ranks a "2" with me. Somehow, I convince my husband that "2" times 5 equals 10 and he's satisfied that he can "satisfy" me with quantity if not quality of orgasm. I am definitely not suffering from lack of intimacy these days. ;)
Mental/Emotional Suicidal. Depressed to such depths that spouse never leaves me alone. Kids are concerned. No one knows what to do--least of all me. Cry daily from back pain and depression. Often leave work at lunch to walk on beach to get "control" for the afternoon. Angry. Not happy with state of bleeding, back pain, vision loss, or sex. Relieved that I've "done something" but impatient for that something to change my overall health and mental state. Marked improvement. Depression fairly nonexistent. (But don't get me reflecting on the issue of sex too seriously and what the future holds in that arena.) Family relieved. I'm relieved. Definitely no longer suicidal or anywhere close to it.
Migraines Daily. Consume around 200 extra-strength Excedrin monthly. Frequently retreat to dark room for relief and go to bed by 7 p.m. nightly. Gone. Not a single migraine in 6 weeks. Still gone. Haven't purchased or taken Excedrin in 6 months. Don't understand this change. Also don't understand why I never went through caffeine withdrawals as Excedrin contains quite a bit of caffeine--particularly in the quantities that were a daily part of my life for so long.
Urinary incontinence I scope out bathrooms every where I go. Bladder is definitely pressed for space. No longer an issue. Still no longer an issue.
Energy level Nonexistent. In bed by 7 p.m. nightly. No exercise or extracurricular activities. Barely can make it through an evening program at my children's school. Improved. Kind of like somebody suddenly popped a rubber band across the room--the momentum from being wound up for so long and then suddenly being released is incredible. Start going to the gym every night for a 1-2 hour workout. More energy than everyone in my family except my 7 year old. Repair bicycle for riding. Rollerblade. Serious swimming and upper body building begins so that I can join the "Surfer Mom" crowd. Now, you may be thinking that I'm taking this "increased energy level" thing too far and you might even be right. But, for the last 2 years I've driven up the coast every morning to work in Carpinteria and watched the board babies (my own personal term of endearment for what appears to me to be overgrown babies with their surfboard line attached to their wrists like a pacifier would be to a baby) out hitting the waves. I've never wanted to surf in my life before. But then, the morning I saw the dolphins I knew my mind was changed. Yep. I definitely want to at least say "I tried."
Hyperplasia/Provera Began taking Provera 1 month pre-UAE because of hysteroscopy report showing hyperplasia. At 6 weeks post-UAE, I've been taking Provera for a little over 2 months. May be cause of many of my symptoms. No longer using Provera. Stopped at 4 months post-UAE after 5 months of prescriptive use. Recent endometrial biopsy shows proliferation of estrogen in the endometrium--but no hyperplasia. I'm only "off" Provera for a couple of weeks when the emotional roller coaster begins. I purchase a jar of Natra-Gest (OTC progesterone cream containing ~400 mg. of progesterone per a 2 oz. jar) and begin using it. Within days I notice the difference. I don't need a lot--but even a little makes a big difference in my daily mental disposition. (No doubt Dr. Broder would not approve. C'est la vie.)
Vision loss Wear glasses. Impaired distance vision since around age 10. Myopia and astigmatism. Some vision loss as a result of UAE or drugs or extreme pressure due to pain. Not sure which. Peripheral impacted for about 9 days but then returned to normal -- night and distance vision also impacted and continues to be a problem at 6 weeks. No improvement. Distance vision is particularly worse during performance of any kind of physical activity (bicycling, treadmill, aerobics, etc.).
Sugar Intolerance Geez. Craved and ate sugar as frequently as possible. Can't tolerate sweets of any kind. Still can't tolerate sweets. No cravings or desires for food made primarily with sugar at all.
Chocolate Ate tons. Daily. Makes me want to vomit. Ugh. Can tolerate in small quantities--like a Hershey's Kiss or two at a time--but no more. Makes me nauseous.
Nauseousness Nonexistent. Daily Only occurs with consumption of sweets.
Weight ~194 ~175 ~152
Clothing size 18++ 16 10
Shoe size 6 ˝ 5 ˝ For years I've been buying shoes an entire size too large because of edema. Unbelievable. 5 ˝

Both doctors are not suprised in the least when I hand them this list. Well, most of this list. There are some details I chose not to include in their copies. They'll have to read this journal to learn it all...They are not surprised because, if anything, I have been prolific in detailing my UAE experiences. I think they've come to expect my detail and verbosity.

So, I have my self-assessment and I'm all ready for my appointments. First stop: ultrasound. Although I believe Dr. Broder would prefer MRI, I had an ultrasound pre-UAE so we stick with the game plan. I'm in good spirits but my bladder is most definitely full. Two liters of water then they always make you wait forever. Well, it seems like forever anyway. The ultrasound technician that calls me in tells me that they never received my previous ultrasound results. Ugh. Apparently the person in Dr. Broder's office that said she would "take care of it" didn't. Why am I not surprised? Irritated. But, not surprised.

The ultrasound takes over an hour and I'm pretty sure that my bladder is going to burst before the technician ever gets done. I don't waste my time trying to talk to her because a) she doesn't seem to be in a good mood; b) every time I ask her a question it seems to slow her down; and c) her ability to concentrate seems to be dependent on my keeping my mouth shut. I oblige. It seems like forever before she tells me to empty my bladder so she can do the trans-vaginal portion of the test. Wouldn't you know it...3 bathrooms and they are all full. My agony continues for another 10 minutes while I wait patiently for some other poor sap to empty their bladder.

After an hour and 15 minutes the technician leaves the room and tells me not to get dressed. She wants to talk to the radiologist. She returns and tells me that I must move to another room with different equipment because the radiologist, a Dr. Marin, wants to see the ultrasound for herself. I do. I'd like to protest but kind of feel that it would be pointless. I get to the new room and Dr. Marin comes in. She brings another individual with her. He goes unintroduced. Boy I find that rude. What the hell is wrong with doctors that think they can bring anyone they please into an examining room with them and not bother to introduce them? Or, how about asking permission for the person to even be present at the examination? Apparently common courtesy and respect for a patient's dignity and wishes is not taught in medical school. She sets me up to repeat the trans-vaginal and still no introduction of the stray individual.

So why didn't I interrupt and make the doctor introduce the stray individual tagging along? Well, normally I would do exactly that. But all I want today is to get out of here. I've had enough with the ultrasound business and just want it over with. So, I keep my mouth shut. My dignity compromised for the sake of expediency. Ugh.

I don't know why Dr. Marin wants to repeat the ultrasound. Something about the equipment and getting better images. I try to ask more but she makes it clear with her non-responsiveness that she's not communicating anything to me. I will have to wait and talk to Dr. Broder after he gets the radiologist's report.

I'm late for my appointment with Dr. Goodwin and he's decided to use the time to return phone calls. Marian, his assistant, is a wonderful woman to chat with and ever so helpful and caring. Not anything like the people that Dr. McLucas hires to staff his office...but, I'm in a good mood today (despite the ultrasound) so I'll try to steer clear of that topic.

Dr. Goodwin and I chat for about an hour or so. We discuss my self-assessment and he asks if I would choose UAE again. I'm not ready to answer that question. I hesitate and then say "I don't know." The real answer is complicated. As complicated as the decision was to make in the first place. If any surgeon had indicated at any time that they would be willing to do a myomectomy and truly work on saving my uterus, I would have readily chosen a myomectomy over the UAE. With a 14 year history of fibroids, that choice was never given to me. So, I guess my answer would be that between a hysterectomy and a UAE I would definitely choose UAE again. (Note: By now, if you've read the Introduction to My Journal, you know that I would NEVER have chosen hysterectomy. Death before hysterectomy.)

While chatting with Dr. Goodwin I learn a lot about what the SCVIR intends to do in the future to track patients and assess "quality of life" issues in regard to UAE. I wish I could attend some of the upcoming events for IRs and gynecologists. I'm truly curious as to what kind of information is shared at these professional gatherings.

Before leaving I promise to write up my experiences with sex pre- and post-UAE in as close to medical terms as I possibly can and pull together a reference list of resources from my research over the past 6 months. Dr. Goodwin wants to publish a case study (my experience with sex post-UAE) to get it into the medical literature. I think this is a good thing...but am not sure of how it will be perceived by other doctors. I've been ridiculed by several male gynecologists (who were recommending hysterectomy) in the past when attempting to discuss the sex issue with them and uterine orgasm and how my sex life would be seriously affected with a hysterectomy. So, I'm not really sure about this. But, I believe that if I don't do it no woman will. Look how many emails I've received on the topic of UAE impact on sex (over a hundred at this point) and yet IRs are saying that no other woman has complained about this issue to them. Well, if other women have been ridiculed like I have, I don't blame them for keeping their mouths shut. But you know what? I don't care what any gynecologist thinks of me these days. Damn them all. I definitely intend to keep my promise to Dr. Goodwin on this issue.

Well, on that note I head to Dr. Broder's office, my gynecologist. Okay, I'll make an exception for him. He listens to me and if he is judgmental at all he's at least not expressing it directly to my face. That's a vast improvement over what other gyns have done and I will gladly accept it.

Since I'm about to change medical insurance (due to a new job), Dr. Broder asks if perhaps he should do a breast exam as well as a pap smear. Geez. Caught me off guard on that one. Yeah, I guess so. But I don't really wanna. I hate breast exams. If I'm not having sex, I don't want a man to touch my breasts. Is that weird? Yeah, probably. Over the years I've learned to tolerate the pelvic exams, but just barely. Breast exams are different. I don't like them. And I don't much care for mammograms either. They are essential tests and I tolerate them unwillingly. Double Ugh.

Near total silence as Dr. Broder does the breast exam. I just can't think of a thing to say and he seems to be concentrating on the exam. Just where do I place my eyes while he does this...as I said before...Double Ugh.

Dr. Broder chooses to carry on a lively conversation while taking a pap smear and doing the pelvic exam. The nurse just lifts her eyebrows at our conversation and keeps her mouth shut. Dr. Broder never notices. I do enjoy this man. He speculates that my uterus is 10 - 12 centimeters. Sounds good to me. (Later, I go back and read posts of other women who've had UAE who have posted on the embo group and discover that 10-12 centimeters is about the worse that anyone was suffering with fibroids when they made their decision to have UAE.)

Dr. Broder asks about the ultrasound and when I tell him what occurred he immediately leaves the room to call over there and then fax them a copy of my previous ultrasound. He returns to tell me it will be next week before he sees the report. He will email me the results. He seems genuinely intrigued at the amount of shrinkage my uterus has achieved.

May 1999March 1999


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