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My Journal

December 1999

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Thursday, 09 December 1999

Okay. Here it is. The details of just how far I've come this past year.

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

Seems less. But still slightly protruding from abdomen.

Uterus: 17.2 x 8.1 x 7.1
Primary Fibroid: 7.8 x 7.1 x 8

Report shows relatively no change in vertical length of fibroid uteri during past 6 months but some change in width -- this pretty much confirms what it feels like as well. Still big. But no longer bothersome.

Also, with a "weighted" and diseased fibroid uteri I considered the possibility of uterine prolapse as something that might still occur down the road and require surgery -- but with such a large mass remaining and firmly "parked" in my pelvic bone structure, I no longer think that a possibility. Dr. Broder agreed with this self-assessment.

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. Periods are still "normal" with only occasional clotting.
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. No longer "excruciating" but does occur from time to time – particularly if I skip a workout or two. Motrin controls pain when it occurs. Creaking in back has reduced with time as has the feeling of knotted and pulled muscles. Working out in a gym at least 4 times/week is no doubt contributing to the improvements felt in this area.
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. ;)

No significant changes here but sexual activity has leveled off back to the roughly 3x per week of previous couple of years.

Husband doing/thinking nutsy things in his efforts to "assist" me in acquiring feelings by finding ways to prolong each sexual encounter. The man is definitely nuts but I still love him anyway.

This is the one area of my UAE that I would have to register in as experiencing a profound loss. So deeply felt that it can't be expressed in words strong enough without causing tears and an emotional flood of senses. I try so hard not to think about it -- but after a year, my thoughts and feelings on the situation mirror those of many women who've experienced sexual dysfunction after a hysterectomy. What am I to do with my 20+ year relationship with my husband? I don't know. I just don't know. I try to make light of it and not dwell too much on it. But how do you do that when you've always led a close, personal, sexual relationship with frequency that is, apparently, unheard of in the statistics? (It would seem that sexual encounters numbering more than 3 x per MONTH is unheard of these days!) What do you do with it when your libido is strong (my ovaries weren't impacted by UAE), your desire is strong, your heart is in the right place, you have someone who is attentive and loving and passionate, and you STILL can't feel a thing? What do you do? I know what I do. Cry. A lot. I keep it to myself most of the time as I don't really want to worry my husband any more. Oftentimes, I find myself waking up in the middle of the night and simply laying there with tears flowing. I want to know when the grieving will end. I wish I didn't have this portion of my experience to post. Truly I do.

You know, Scott Goodwin has apologized for this particular aspect of my situation numerous times -- but I can't blame him for something he had little expectation or knowledge of potentially occurring with UAE. He knows now. As does just about every IR performing this procedure. My hope is that they are now looking into what made this occur and how they can avoid it with future patients. Perhaps finding a way to avoid the cervical branch of the uterine artery with embolization may help. I don't know. But someone needs to find out as I know for certain that I am not the only woman who has experienced this outcome from UAE.

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. No changes from 6 month report.
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. Still gone but pressure headaches from sinusitis is frequent. Seeking care from ENT and have now been prescribed 4 different antibiotics to battle my chronic sinus infection. Cephredine and Cipro were worthless to me and caused severe abdominal pain. Levaquin was working and almost immediately alleviated the pressure in my head by causing rapid drainage of my sinuses BUT it also caused extreme kidney pain, joint and muscle pain, abdominal bloating, and weight gain. I finished this course of treatment but do not wish to ever take this drug again! Sinuses are not completely clear. Surgery is the next option should the pressure headaches return.
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. 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."

Same. High energy. Lack of sleep starting to catch up with me though. Haven’t gone surfing yet but have deep faith that I will within the next year! Particularly as I've lost weight and continue to develop muscle strength that will be crucial to participating in surfing -- and surviving the waves.

Rollerblading and bicycling with my sons whenever I feel like it.

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.)

Hasn’t returned. Still using Natra-Gest progesterone cream. This cream definitely makes a difference on a daily basis. My husband wholeheartedly agrees as my general disposition changes significantly on the 5-7 days that I do not use this cream during my period each month.

Dr. Broder asked me about this during the one year visit. Wanted to know what "kinds" of dispositional changes I experience or notice. So did Dr. Goodwin. Interesting to note that this caught their attention. The only way I can explain how this cream works for me is to describe the difference between being on a constant roller coaster of emotions vs. level-headed calm that doesn't include horrific (and I DO mean horrific) levels of highs and lows.

Dr. Goodwin and I talk a little bit about the antidepressants commonly prescribed to women. In my view, antidepressants are often inappropriately prescribed by doctors when hormones are what a woman is probably truly needing. Can't say I think too highly of the recent FDA approval of Prozac for PMS and the manufacturers search for a new name for this product in the hopes of marketing it without the previous stigma that Prozac has acquired.

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.). No improvement. Referred to a neuro-opthomologist but I haven’t scheduled an appointment. I guess I’m still hoping it will improve. Vision is like a yo-yo – moving astigmatism.
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. Can tolerate sweets in small quantities but still have no cravings or specific desires to seek out sweets.
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. Blech. Can tolerate but just as soon avoid chocolate entirely.
Nauseousness Nonexistent. Daily Only occurs with consumption of sweets. None.
Weight ~194 ~175 ~152 ~150 (actually was down to 145 but ballooned back up when I took Levaquin within past couple of weeks)
Clothing size 18++ 16 10 10
Shoe size 6 ˝ 5 ˝ For years I've been buying shoes an entire size too large because of edema. Unbelievable. 5 ˝ 5 ˝

There are a few additional items that are probably notable. My physical activity level is much higher than ever before and working out at the gym has progressed right back into the habit it was over 14 years ago. This makes me so happy that I can't even express how good it feels! My body mass index has dropped from ~34 (taken 1 week after UAE) to ~25 (taken at the 1 year mark in November) and even though I am still overweight I know that I am returning to a positive level of physical fitness.

My overall quality of life has improved so much that I can barely recall or understand how bad it was a year ago. Even with a fibroid uteri that remains quite large. I've had discussions with several gynecologists that think it silly that at the end of the "road" of treatment a woman would be saddled with still a huge fibroid uteri. They don't find that an acceptable outcome at all. They are not willing to refer women for UAE when their fibroids are particularly large like mine were (and still are) because they simply don't believe it worth the time, effort and money just for the woman to end up with a big old mass still sitting in the abdomen. At this point I think I can say unequivocally that they are wrong. Big time wrong.

I am happy with my huge fibroid uteri and my current quality of life. Much more so than if I had undergone hysterectomy. I know that intrinsically and intuitively. There is simply no way that a hysterectomy could have given me what I have today: a sense of overwhelming peace and knowledge that the decision I made was my own based on all of the medical information available at the time. Knowledge. Choice. Personal empowerment. Good or bad -- the decision was mine to make and I made it. No physician, and I do mean NOT A SINGLE PHYSICIAN OF ANY SPECIALTY, has the right to limit the information shared and choices available based on what THEY think is best for me -- particularly when physician bias towards options that benefit him/her financially exists. I live in this body. Not the doctor.

November 1999


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