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My Journal

December 1998

01 02 03 04 05 06 07 08 09 10 11 12 13 14 15
16 17 18 19 20 21 22 23 24 25 26 27 28 29 30 31

Tuesday, 01 December 1998

Wednesday, 02 December 1998

Thursday, 10 December 1998

I make the following email post to the embo chat group and get immediately unsubscribed by the group moderator:

I have not posted an email to this list group in quite some time (and have deleted all previous posts made by me from the archives--newbies need not go looking for my past posts), HOWEVER, at 6 weeks post-UAE I have a few things to get off my chest.

This procedure is experimental. I make no apologies for my use of this term and no amount of browbeating from disgruntled members of this email list (who vehemently disagree with me) will change my mind.

When doctors make sweeping statements that are similar to the one that Dr. Kirsch recently made regarding pedunculated fibroids with long stems breaking from the uterus (something he's NEVER seen in over 330 cases), I see red. Dr. Kirsch, how many of those 330 cases were of women with fibroids of this pedunculated nature? I'm sorry--how many????? Out of the ones that did have long-stemmed pedunculated fibroids, how much time has passed? 5 years? 10 years? Currently, most referring gyns are attempting to "screen out" women with fibroids of this nature--they are discouraging them from this procedure. I am sincerely curious how many of these cases that Dr. Kirsch has seen out of his 330. . .

Dr. Goodwin and Dr. McLucas are doing research follow-up on only 60 patients in their initial study. 60. (I believe Dr. Kirsch's initial study was even a smaller number.) Does any one have any idea how dissimilar patient history, patient presentation of fibroids currently, and patient response to UAE (in ALL aspects of their physical well-being) will be with such a tiny, tiny (need I say minuscule) study? They ONLY thing they care about is whether or not the fibroids shrink. If shrinkage occurs, that, to them, is success. Well f***. Any gynecologist will tell you that if you cut off the blood supply, the tumors shrink. Duh. (This procedure has been performed for quite a number of years during myomectomy surgery when bleeding becomes uncontrollable. It is how the bleeding is stopped, if necessary, without performing a hysterectomy. Do not, necessarily, discount or pooh-pooh your gynecologist's perspective on this issue. If they perform myomectomies at all, they DO know what UAE is all about. And they probably have more experience with the after-effects of this procedure than THIS email list of subscribers is giving them credit for.)

And the questions the women are being asked pre-and post procedure by the gyns. . .don't even get me started. Suffice it to say that they don't have a lot of significance to anything other than "shrinkage", "pain--and the management thereof", "bleeding" and a few other odds and ends. If you have other questions or concerns, don't expect the infantile research being put together by the current gyn-IR groups to answer any of them. If ALL that you care about is SHRINKAGE of those tumors and what tools are best used by the IR to perform this procedure, then by all means, jump on board this train.

I digress. Has my tumor shrunk? Significantly. Am I happy? About the shrinkage?--yes. About a LOT of other things?--NO. Don't count me in as a rah-rah cheerleader like so many others on this list who have had this procedure. I'm not with you babes. IMHO, the ONLY women that should consider this procedure are those

who truly are bleeding excessively (passing blood clots, having periods that last 30 days out of the month, etc.)
have fibroids that, perhaps, have an incredible blood flow to them (Doppler ultrasound can tell you this) that would make surgical removal high-risk
have fibroids that are located in the uterus that, most likely, would result in a hysterectomy even though the surgical intent is myomectomy
and those who don't want a hysterectomy under ANY circumstances (no matter the outcome)

If you are asymptomatic, think long and hard before you go this route (or ANY route).

If you are a woman who experiences uterine orgasms (intensely pleasurable uterine contractions during stimulation of the g-spot that results in mega-orgasmic explosion--or something close to it--that can be felt in the uterus--women who've given birth are most likely to experience this type of orgasm--although others may, as well) during sex and would like to keep this particular aspect of your physical response during intercourse, do not, I REPEAT, do NOT go this route. At least not until there is SOME or ANY research done in the area of sexual response and UAE impact.

Currently NONE is being conducted. Not a SINGLE question asked regarding sex by the gyn or IR in any study that I've been able to locate and read on this procedure. (Please doctors. . .correct me if I'm wrong. At the same time you can explain to me why there's no mention of it in any of the printed literature.) And, I believe that I've read nearly all of what has been printed. (In addition, I recently started researching the issue in relationship to myomectomy and have yet to come across any "studies" that have proved informative.) Also, while sex is possible within a week after the procedure. . .how was the blood flow to the region ladies? If you felt anything AT ALL, I would appreciate some email that would give me hope! Sex is possible. In fact, with tumor shrinkage it can be considerably more "comfortable". Is "comfortable" what you were going for ladies? Or, is it simply the "tradeoff" to relief from your pre-UAE symptoms? Yes, sex is possible much sooner with UAE than with myomectomy, hysterectomy, etc. Whether it means anything to you in terms of climax / orgasm depends on what kind of sex life you had before UAE. . .

Dr. Goodwin has recently conceded to me that "If so-called uterine orgasm is important for some women, then uterine artery embolization might conceivably impact sexual function in those women who experience what they describe as uterine orgasms." He doesn't really know. And, only 1 other woman (besides me) out of the 175 cases of UAE that he has performed has even questioned him on this issue. I did question him. Long and hard BEFORE the procedure. He never gave me the response quoted above until today. And that answer was prompted by my post-UAE concerns. I am not happy.

Although Dr. Goodwin seems to be a truly caring physician, (that I do, in fact, like very much), his response to me post-procedure phrased in the terms ". . .so-called uterine orgasms. . ." shed new light on his perspective. Reality check for me. I'd like to think that his reference to ". . .so-called. . ." is only because he, himself can't experience it and can't, therefore, relate to my experiences personally. Somehow I don't think that is the case, however.

I made the choice for UAE knowing full well that there was still a lot of questions going unanswered by Dr. McLucas, Dr. Goodwin and Dr. Kirsch. I wanted to post very specific questions regarding a number of issues that I was concerned about to this website and was STRONGLY discouraged (by the cheerleading crowd). Nonetheless, I proceeded with the procedure and do accept responsibility for making the best decision that I could given the choices I had for my specific case. It's all that I can do at this point in time.

Post-UAE, I have had a number of unwanted, completely "unexpected" (gee, we've never had THAT happen before--and, you know, I just can't see how that could POSSIBLY be related to the UAE. . .) side effects. I am not, per se, upset or terribly negatively excited (excluding the sex issue) about the side effects that I have experienced. I am, however, very angry about Dr. McLucas' and Dr. Goodwin's responses to my questions regarding the so-called side effects. They both have begun to sound like doctors more interested in what I call the "gee-whiz" factor (duh. . .I didn't know THAT would happen--I can't possibly see how THAT could be related) that limits their liability. I no longer see or hear truly caring, interested doctors who want to know the answer as much as I do in terms of how to correct the problems.

I believe, from reading the posts on this list, that quite a number of women who've had UAE have had "unique" side effects that are troubling to both them and the doctors. Is this information being collected? Will we see a study published on these "anecdotal" incidences? Or, will the information be isolated from us, watered-down, or "skewed." Speaking of "skewed". . .oh, I can't get started on this issue. . .suffice it to say that there is "some" research that has been published that I am EXTREMELY skeptical about. . .

And what about that post-procedure pain management issue? Why are doctors all over the country "experimenting" so callously on women on this issue? Apparently, anesthetic preferences at each institution and with each doctor take precedence over the actual management of the excruciating pain that can be felt by most (but not all) women who have this procedure done. Stop experimenting you f***heads! Read Dr. Kirsch's publication and FOLLOW IT! I digress again. Perhaps it comes from seeing a bill for 10 mg doses of morphine administered numerous times that were actually 5 mg doses and not all of them actually administered.

Now, lets talk about expenses. Please. My bills are STILL coming in and that's with Dr. McLucas accepting insurance payout on everything he did as 100%. Blue Cross covered 90% of everything else. But the bills for performance of hysteroscopy/laparoscopy and UAE don't even begin to address the anesthesiologist, the surgery center, the hospital, lab reports, ultrasound, medication, additional follow-up due to side effects, etc. Each week I'm surprised by something new that was "separate" in terms of billing, lab work, or additional doctor visits. I don't have a total count yet. I probably won't for some time. But, right now it's topping $35K. I don't even want to guess what my "share" will eventually be.

After 2 hours of writing this post, I'm exhausted. Yes, there are good things about UAE. Yes, there are bad. There is no perfect solution that works evenly for all of us. I wish there were. Consider this option as seriously as you have your other options (hysterectomy, myomectomy, laparoscopic surgery, etc.) and make the best decision you possibly can for yourself. You have to live with the outcome. No one else. Certainly not the doctors treating you and definitely not anyone on this email list. Weigh everything. . .even those questions that are nagging at you in the back of your mind that you just can't get an answer to or are afraid to ask. . .

carla
mailto:cdionne@earthlink.net

p.s. I expect, and welcome, email from those who are further along than 6-weeks post UAE who will tell me that it "gets better." I won't, however, be posting any additional personal responses to the embo list UNLESS something that I've outlined above that is negative is reversed in some way, shape, or form that has a direct positive impact to me. At that point in time, I will be happy, nay, ECSTATIC, to retract. :)

I receive some pretty condescending email as a result of my post. Although I've been unsubscribed, it hasn't stopped the "cheerleaders" from attacking me offline personally. After receiving the following at the end of a smartass email, I respond in kind.

> Carla, you're welcome, honey.

My response:

You can, apparently, be as condescending as you wish to anyone who chooses to post email contrary to you and your results post-UAE. You have, on numerous occasions in the past, emailed me to "tone it down" and "don't go there" when I've expressed my concerns/questions pre-UAE. In doing so, you never took the opportunity to share your experiences regarding sex post-UAE at all other than to say it was "great". Why is that? You knew my concerns but never shared with me your FULL UTERINE ORGASMS that you are now proclaiming. (Apparently you also don't remember the email you sent to me asking me what a uterine orgasm is--you indicated you never felt anything in the uterus during sex and didn't understand what I was writing about!)

Now that I've had this procedure, you can go to hell--because I no longer believe that you own the rights to knowledge of what can/cannot occur to women who choose this procedure. In fact, you're just one person. One voice. No more or less than me. Your experience was positive (apparently 100%). Mine, was mixed--some positive--some negative. I believe we represent the "spectrum". Too bad you aren't as giving and understanding of me as I have been of you. I did, afterall, choose this procedure based on much of what was being discussed on this email list. Most of which was positive.

I wasn't out for a bad ride. I wanted a solution to my uterine fibroids probably as much as you did to yours. 12 years was a long time to suffer with the last 2-3 years: making me look 6 months pregnant ALL of the time, going to bed at 7 o'clock every night, bleeding like a stuck pig during my periods, never feeling quite up to playing with my 7-year-old after a day at work or staying up to watch a movie with my 12-year-old, or staying awake long enough to see my 17-year-old daughter perform at the ballet. And, sex, for me, is not a joke that I heehaw about with the girls in the locker room. It's something I've come to enjoy and cherish sharing with my husband after 20 years of marriage with the guy.

I'm thrilled over the positive things that have come about post-UAE for me--my abdomen is quickly shrinking and I've lost a lot of weight already, my energy level is quite high, my (former) daily workout at the gym has easily been added back to my regime, sex is definitely more "comfortable" (albeit not necessarily rewarding for me. . .), my (formerly daily) migraines have completely disappeared (even though Dr. Goodwin has no clue why), and, in general, I feel healthier than I have in a very, very long time. Negatives: poor-pain management post-procedure, sex, taste of food (everything tastes gross now--including sweets and chocolate), excruciating low back pain that was present pre-UAE and has actually intensified post-UAE, some minor vision loss (again, no understanding of why this occurred), and a few other odds & ends. Some positive--some negative. And, at 6 weeks, still enough negative for me to NOT recommend this procedure to anyone other than those I described on my previous post. Apparently, we disagree. Too bad it can't be done with more tact and civility.

I hope your condescending responses to me are furthering your "cause" in the promotion of UAE.

carla

Thursday, 11 December 1998

I started my period this week and have a question. Wasn't this procedure supposed to cut down on the bleeding? Five days later and I'm still bleeding like a sieve--complete with clots. I could have sworn Dr. Goodwin used a TON of PVA to cut off the blood flow. (TON as in quantity not weight.) I have an appointment with my gyn on Monday so I can't wait to hear his response.

Based on my email to the "embo" group, I was unceremoniously "removed" from the email list. Ouch. Women who have had this procedure have no interest in hearing about the down side. Oh well. It was, however, almost enough to make me completely retreat again. My sensitivity level is extremely high these days.

When I took the week off from work I told only the HR Manager and my immediate Manager why I needed the time. Apparently, one of them felt compelled to let others know why I had taken the week off and several people came up to me and asked me a lot of personal questions the day I returned to work. It was not good. One woman I work with told me I was "stupid" for having this procedure done and that I ". . .deserve what I get. . ." (in terms of side effects) for going with a new procedure. She had seen the Dateline NBC story, and, as an auditor in Regulatory Affairs for the FDA she felt "compelled" to share with me her feelings. She was laughing at me as she proclaimed my stupidity to me. I was appalled and speechless. She surpassed the callousness of most doctors that I have found distasteful in my lifetime.

It has been rough at work ever since. You see, I went to the HR Manager and told her what this woman had said to me and how hurt and upset I was by it. All I wanted to do was "unload" and, hopefully express to her that I didn't think she or my manager had a right to share my reasons for taking a medical leave with anyone else in the company. I learned very quickly via the HR Mgr that, by state law, this kind of conversation (the one with the woman mentioned above) in a work environment is considered "harassment" and that because I had shared with her the conversation she was "compelled" by law to deal with it or face possible liability for a "disability harassment" lawsuit. Again, I was speechless. I had no idea. I feel like the train left the station and I'm bouncing behind on the tracks--barely holding onto the rail of the rear caboose!

The HR Manager then had to get the President of the company involved in order to get his permission to bring in an outside mediator to "deal" with this woman and her inappropriate comments to me. I couldn't stop the "train" if I wanted to. Then, the woman who made the comment, her boss, my boss, the HR Mgr and the mediator all were put into a room for "sensitivity" training. It was humiliating. After about an hour I had to leave. They stayed in the room for over half a day discussing me and the situation and receiving this so-called training. I can't even begin to express how this has humiliated me at work. Extremely personal, private information being shared with so many people that I have to work with every day.

As a result, I am now looking for new employment. But until I find another job I am stuck with the current work situation. Every day is a "chore." I tried previously to seek private counseling (because it is a benefit of this company) but was told by the psychologist that I called that our conversations could not be kept private from the company. It was a condition of the benefit--that in order to get continuous counseling approved, all communications with the patient were an open book to my employer. I can't afford to pay for my own counseling. So, I'm just trying to escape the current employment situation and hope that my life can return to "normal" someday soon.

Well, this isn't a "medical" negative. But, a negative nonetheless. I never dreamed of this "negative". . .

Monday, 14 December 1998

Traffic on 101 to 405 does me in again. I'm 40 minutes late for the appointment and they need to see if Dr. Broder can still see me. He says yes and I go to Nurses Station 1.

So, here I am--sitting in the patient waiting section of the UCLA OB/GYN suite near the examining rooms and nurses station. A nurse interrupts me and tells me to step on the scales. 175. Electronic digital scales. Next, I empty my bladder. I'm soooo thirsty. Have been for about an hour and am wondering if there is a drinking fountain nearby.

I just realized that I forgot to eat breakfast this morning. I'm not hungry. But, a little shaky. Could be just the doctor appointment. I go into the examining room and undress per the nurses instructions.

Dr. Broder comes in and we chat briefly. He buzzes for the nurse and then examines me for uterine size. He's not sure. Thinks the uterus is 16-18 weeks pregnancy size. (Previously, according to McLucas, it was 20-22+ weeks in size.) He finishes the exam and dismisses the nurse.

We chat some about symptomology. He concurs that exercise per physical therapy is a good course of treatment for my back. Sex, he indicates, won't be back to normal for probably 6 months or so.

"Don't worry about it. Or, try not to."

Didn't order an ultrasound. Thought it useful only to those collecting data or "the curious."

"Save the expense--unless you're curious, that is."

We talk about shrinkage and I tell him about the website that has an animated gif showing fibroid shrinkage. He was interested. Definitely interested. He asked about it twice.

Things of note:

Dr. Broder was uncomfortable discussing sex. Wouldn't look me in the eyes and started to talk much faster. It was actually kind of cute and extremely humorous.

I feel older than Dr. Broder. Much older. I don't think that I actually am but somehow think that I've now crossed a line with my view of the world, my life, and my ability to communicate that makes me extremely uninhibited in conversation. Even with doctors who should and probably do know more than me. Yes. I definitely feel older than the doctor treating me. It's a curious feeling. Does everyone go thru this? You spend your whole life feeling helpless when you're sick and "looking up" to doctors (who are always older than you) to "fix" your sickness. Then, suddenly, it seems that you know a lot more about your own body, sickness in general, treatment options, etc., and you find that the doctors seem younger than you and know very little more than you that would help you get over your illness.
Medicine is so imperfect. Maybe that's what it is...total realization and absolute recognition that medicine is so imperfect. And, there's comfort in that. Comfort in that we're all walking blindly to the best choices we can make at any given time and that life is always a crapshoot.

Wednesday, 16 December 1998

Can someone please tell me what has happened to Christmas in California?

Last year at Christmas my employer placed a "toy box" in the lobby and sent out a memo asking people to place toys in the box as they would be picked up and distributed to children who might otherwise go without during the holidays. It wasn't a very big box--barely 4 feet tall. And yet, during the 3 weeks it sat in the lobby it was only half filled. I was dismayed at why employees chose not to contribute. Well, I figured, maybe they're all "give" out--maybe their charitable hearts have given elsewhere and donating a toy at work is too much for them. I thought no more of it--until this Christmas, that is.

The "toy box" was placed in the lobby and a memo sent out once again. And, once again, the box went unfilled. This year the human resources manager decided to offer an incentive--a root beer float party if the box was filled by December 9. I overheard employees joking about the toy box.

"What will the HR Manager do if the box ISN'T filled? Cancel the party?"

No, it was generally agreed by many an employee that if the box was not filled, the party would still go on.

On the day of the scheduled party I was not at work. The next day I discovered that the human resources manager had, in fact, canceled the part. "Good for her" I thought. A lot of joking and good-natured grumbling went on as all had expected to be "rewarded" regardless of their lack of giving.

One week later, the box has had no additional toys placed into it. I just don't get it. Don't they know what it means to the children who receive such toys? Don't they know how much a simple $5 or $10 toy can show a child that people care about them? Maybe they don't. Maybe I need to tell them, I thought. So, I sent my manager an email. He promptly came and talked to me.

You see, when I was only 10 years old my baby sister was diagnosed with a malignant brain tumor. Cancer. She was only 4 years old. Cancer. It seems, looking back on it now, that our family cried daily for over a year. Tears were all we knew. In addition to my baby sister, I have 3 brothers and, all told, my father worked very hard to provide for this family of 7. But cancer is expensive. Emotionally and financially.

My father only had a first grade education and worked construction for a living. He was an ironworker. The pay was good. But you have to work to get paid if you're an ironworker. No sick time benefits. No paid leave. With this kind of physical labor you have to actually "do the time" in order to receive the pay. But now his baby was sick. Very sick. I can't even imagine what my father was going through--I only know what I went through as a member of this family.

My mother and father practically lived at the hospital for most of that year. My brothers and I rarely saw our parents as we were "farmed out" to anyone who could and would take us. I remember spending Thanksgiving at the Pastor of our church's home and not feeling like I belonged at all. I attended school with the pastor's kids and we weren't exactly the best of friends. Nonetheless, they were nice to us and welcomed us into their home. But, they weren't my mom and dad. And the Thanksgiving meal was not what I was accustomed to at all. It just wasn't the same. I remember picking at the mash potatoes on my plate and then asking to be excused. When they said they thought it best that we all remain at the table until dinner was over I remember quietly sitting there and letting the tears flow down my cheeks.

Christmas that year was a little better than Thanksgiving. My mom's sister and her two kids moved in with us so that my aunt could care for us. We were crowded with the additional family members in our home, but at least mom and dad could continue to be at my sister's side at the hospital without worrying about where to place the rest of us. As for gifts? We had none. Mom and dad only had enough money to put together some rather meager stockings for each of us. We acted like it didn't matter. Even if we didn't completely understand our family's financial situation or what was happening at the hospital with our sister, we knew that our parents were doing the best that they could.

Imagine our surprise on Christmas eve when there was a knock on the door. We weren't expecting anyone and mom and dad weren't even home. We opened the door to find complete strangers, arms laden with boxes, on our front porch. They identified themselves and told us that they had heard of our "situation." They asked if they could come in so as to set down the boxes they were carrying. I don't remember how many boxes there were--but there was food, clothing, and a huge box of Christmas wrapped toys--enough for all of us. Our aunt thanked them and they left as quietly and quickly as they had arrived.

Today, hidden in a drawer in my dresser at home is a "play" wallet that was given to me in one of those wrapped packages. It is a memory of all that was good about that time in my life. It means a lot to me. More than most people could even begin to imagine.

These days I have 3 children of my own. I pray that none of them ever get as seriously ill as my baby sister was so long ago. I am blessed and I know it. I give generously at Christmas and teach my children to do the same.

So, an empty "toy" box sitting in the lobby at work disturbs me.

"Can someone please tell me what has happened to Christmas in California?" I asked my manager when he came to respond to my email. "I just don't understand. Why don't people participate in this, relatively painless, act of giving?"

He didn't have an answer. But, he too was dismayed and indicated that he would "take it up with his peers."

Today, in the spirit of Christmas, my manager and "his peers" took it upon themselves to shop for toys and fill that toy box. I was moved, deeply, by this act of generosity. And, I want to thank them, from the bottom of my heart, for their response to my dismay over the unfilled "toy" box.

Truly. Thank you.

Tuesday, 22 December 1998

Wednesday, 23 December 1998

Because of my post the to the embo list group on December 10, I've received a number of emails from women post-UAE trying to reassure me. Although many women were offended by my questions and posted their shock and dismay to the listserv postings, those very same women sent me private email that included some of the following statements.

Women will discuss this subject if they are asked. . .but first you have to ask and risk being offensive.

"I hope my sexual drive is not affected by my UAE because that would certainly upset me. However, other women seem to get it back and some even report increased sexuality, but I also read that about Hysterectomy, and that seems ridiculous since my orgasms are very deep and uterine contractions certainly play an important role in that."

"I'm not sure about the uterine orgasm you mentioned but I can say that my experience is that sex was greatly improved, probably due to the relief of the symptoms like the bloating and discomfort caused by having that huge fibroid."

"My sexual response has improved since my UAE in August."

"I am 3 weeks post UAE. It is too early to say how sexual response is. At least for me. Sorry I can't offer more assistance."

"I think it's important to acknowledge that the procedures we're all contemplating have some serious emotional/psychological effects as well as physical. In addition, you raised the issue of sexual response, which is too little discussed, both by us as women & the doctors who treat us."

"At 3 mos post UAE, sex is even better than before. It must have something to do with not having the bloating, not being in pain all the time--uterine, ovarian and back pain--, the not bleeding 10-12 days out of the month."

"I had UAE in early August of this year, and unlike most others, had more than a month of fever, fatigue, expelling fibroids vaginally, etc. All symptoms that were to be expected, however, not usually found in one person, so sex for a month was nonexistent. Sex is better now than before the UAE, but that is as much psychological as physical. I no longer think about whether or not I'm on the verge of starting a gushing period, or whether the shifting around of my uterus will cause discomfort. So, I think the right answer for me is that sex has returned to normal for me, back to my sexuality before it got somehow contaminated with the fibroid symptoms that were always there, if only in the back of my mind. My orgasmic response seems to be in the same range as before-sometimes intoxicating and sometimes a very pleasant sneeze and many points between."

"My orgasms have greatly improved and sex is so much more comfortable now. I was incredibly painful pre-embo. We didn't have sex for three months post-embo (eeek) because we feared getting pregnant before the procedure had time to work. But soon after that it was good and it's great now! I had my embo last May."

"While I didn't care for the tone, I thought your post was valuable. I have been vacillating on the myo vs. UAE for a month now. Today, (before reading your post) I decided to go ahead. I have to admit that your posting rocked my confidence in giving the go-ahead. I really need to hear from more women about how they felt in regard to sex and orgasm at say 2 weeks post-UAE, 1-2 months etc. Or, more simply did things change and when, did things improve or get worse and when."

"In my opinion, if we're comparing hysterectomy with UAE as treatment for fibroids, there are a lot more pros with UAE. Has anyone been asked by their gyns how they felt mentally, physically and sexually after hysterectomy? Has anyone been told what their life will be like afterwards? From what I understand you may not have good results in any of these areas with hysterectomy. My gyn said "the uterus is just a baby carriage" and therefore not necessary. Well, I happen to think it's a little more important than that. But if folks are so fired up to gripe about something new, by all means, go ahead and have the hysterectomy."

"I'm not sure about the uterine orgasm you mentioned but I can say that my experience is that sex was greatly improved, probably due to the relief of the symptoms like the bloating and discomfort caused by having that huge fibroid. Also since I no longer had periods every two weeks. By 3 months post UAE, sex was GREAT."

"I too was concerned with UAE's effect on sex--especially as it relates to uterine contractions during sex. Absolutely no questions was asked about the UAE on sex by the gyns. However, I've noticed no difference in uterine contractions (hooray!), so there's been no negative aspect there. However, I did notice that I don't have such an absolute desire for sex before my period now, which was one aspect of my PMS pre-UAE."

"Hey, I am INTERESTED again, so that is a start. The pelvic heaviness from the fibroids as well as the dreadful menses were ruining my sex life. My sense is that I am ready to get very busy."

Monday, 28 December 1998

I've been reading clinical trials on the NIH website that are currently in progress and have oscillated between anger and disbelief of the kind of research being done on women and their uteri. I only went there because I found out that my mom has been on synthetic progesterone/estrogen for 3 years now as part of a clinical trial. Since my mom had a d&c for hyperplasia only a few years before she entered the clinical trial I was concerned that she was being prescribed estrogen. Apparently the forms she completed and the medical exam didn't include any questions that ever touched upon her previous pre-cancerous condition. My mom is convinced that osteoporosis is a greater danger to her than uterine cancer is based on what the doctors have been telling her that she reports to for this study. I don't know what to think. I need more research information.

Just when I was so focused on my own pain and recovery, my mom comes along to thoroughly confuse and distract me. :) And, to lead me to new websites.

I had a great Christmas holiday this year. Definite improvement over last year. I worked out at the gym 2-3 hours every day and am thankful for a family that is indulging my need to have "private time" away from them.

My husband is "chasing me around the bed" nightly these days. While I find it extremely pleasurable that he is focusing such energy on me, my sexual response to intercourse hasn't changed much. I've stopped talking to him about it because it's pretty clear to me that he doesn't really understand. After 20 years of extremely open, frank, sexual conversation and encounters with my husband, I've found that I am unable to share with him what's going on now as it seems as though he takes it as a personal failure on his part. Not true. Not at all. I love him all the more just for his wonderful attempts to arouse some feelings in this body of mine. And, I participate fully in each sexual encounter we have.

But, my uterus just feels like a big dead lump in my abdomen and remains unresponsive throughout intercourse as though I had swallowed a meal meant for 10. Yesterday, the "loss" of my previously wonderful orgasms hit me like a ton of bricks. Two months post-UAE and depression is seriously settling in. I feel like such a baby--there are many people in this world with a "lot" much worse than mine. I need to stop whining about it and get on with my life. . .but, it's hard.

Oh well. On to the New Year. With high hopes of many more changes to come as I encounter the 3 month mark and the 6 month mark. :)

Wednesday, 30 December 1998