My Journal

November 1998

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Monday, 2 November 1998

UAE. I check into the UCLA Medical Center today. First things first, they make me sign the following before actually admitting me. You know, I honestly think patients should have the opportunity to read documents like this BEFORE they show up for admittance.

ADMISSION AND MEDICAL SERVICES AGREEMENT -- READ CAREFULLY BEFORE SIGNING

1. MEDICAL CONSENT: The patient or the patient's representative consents to any medical treatments or procedures which may be performed during this hospitalization or on an outpatient basis (including emergency treatment or services), which may include but are not limited to x-ray examinations, taking of medical photographs, laboratory procedures, anesthesia and/or hospital services rendered to the patient under the general and special instructions of the attending physicians or other physicians of UCLA Medical Center ("hospital") assisting int he care of the patient. The patient or the patient's representative also consents to the admission of the patient to the hospital if this is deemed necessary for the care of the patient. All of the terms and conditions hereof shall also apply to such admission.

2. RELEASE OF INFORMATION: Upon inquiry, the hospital may make available to the public certain basic information about the patient, including name, address, age, sex, general description of the reason for treatment (whether an injury, burn, poisoning, or other condition), general nature of the injury, burn, poisoning or other condition. If the patient or the patient's representative does not want such information to be release, he/she must make a written request for such information to be withheld. The patient or the patient's representative may obtain a separate form for this purpose upon request.

The undersigned agrees that, to the extent necessary to coordinate the patient's health care or determine liability for payment and to obtain reimbursement, the hospital may disclose portions or all of the patient's record, including his/her medical records, to any such person or corporation which is or may be liable for all or any portion of the hospital's charges, including but not limited to insurance companies, health care service plans, governmental agencies, or workers' compensation carriers.

3. PERSONAL VALUABLES: Hospital maintains a fireproof safe for the safekeeping of money and valuables. Hospital shall not be liable for the loss of or damage to any money, jewelry, glasses, dentures, furs, fur coats and fur garments, or other articles of unusual value and small size unless paced therein, and shall not be liable for loss of or damage to any personal property unless deposited for safekeeping. Please initial _______.

4. FINANCIAL AGREEMENT: Hospital Services: The patient shall pay the Regents of the University of California for hospital services, including professional services of hospital-based physicians, in accordance with the regular rates and terms of the hospital. Professional Services: The patient shall also pay for professional services rendered by non-hospital-based physicians as billed by the UCLA Medical Group, the UCLA Professional Services Billing Offices or other representative agencies or individuals. When this agreement is signed by a spouse or a financial guarantor, the spouse or the financial guarantor shall be jointly and individually liable with the patient. Should an account(s) be referred to an attorney or a collection agency for collection, the undersigned shall pay the actual attorney's fees (including costs) and collection expenses incurred in addition to other amounts due. Unpaid accounts referred to outside agencies for collection shall bear interest at the current rate per year from the date of referral.

5. ASSIGNMENT OF BENEFITS (INCLUDING MEDICARE BENEFITS): The undersigned authorizes, whether he/she signs as agent or as a patient, the direct payment to hospital or its hospital-based physicians of any insurance benefits (including but not limited to hospital insurance and unemployment compensation disability benefits) otherwise payable to or on behalf of the patient for this hospitalization or for these outpatient service, including emergency services if rendered, at a rate not to exceed the hospital's actual charges. It is agreed that payment to the hospital or its hospital-based physicians, pursuant to this authorization, by an insurance company shall discharge said insurance company of any all obligations under a policy to the extent of such payment. It is understood by the undersigned that he/she is financially responsible for charges not paid pursuant to this assignment. The patient further certifies that information given in applying for payment under the Medicare or Medi-Cal Programs is correct. The patient requests that payment of authorized benefits be made on his/her behalf to the hospital.

6. TEACHING AND RESEARCH INSTITUTION: The University of California, including the UCLA Medical Center, is a teaching and research institution. The undersigned understands that residents, interns, medical students, students of ancillary health care professions (including but not limited to nursing, x-ray, rehabilitation therapy) and post-graduate fellows may participate, under the supervision of the attending physician, in the care of the patient as part of the medical education program of the institution. The undersigned further acknowledges that the University of California, including the UCLA Medical Center, may review medical information and specimens for teaching, study and research purposes, including the development of potentially commercially useful products. The undersigned further agrees to the use of these materials by the University of California or other institutions, in accordance with state and federal law, so long as the patient will not be identified by name, address, or social security number. This consent does not apply to the use of sperm or ova for experimental purposes or for transfer to other individuals for treatment of infertility.

The Regents of the University of California, for UCLA Medical Center, and the patient or the patient's representative, hereby enters into this agreement. The undersigned certifies that he/she has read and agreed to the foregoing, received a copy thereof, and is the patient, the patient's representative or is duly authorized by the patient as the patient's general agent to execute the above and accept its terms.

On the reverse side of the form are 3 separate privacy notices. One for release of financial and medical records, one regarding the required use of my social security number, and one regarding cancer reporting.

Did you know that if cancer is diagnosed while one is checked into the UCLA Medical Center that they are required by state law to report it to a regional cancer registry? Apparently this information is being collected to help identify preventable causes of cancer, and includes specific details of the type of cancer and the treatment provided as well as the patient's name, age, sex, ethnicity, occupation, religion, address and social security number. It's all protected by California state law. This is all news to me.

I ask whether or not I can cross any specific items off the consent form. I'm told "no" and instructed that if I mar the form in any way, other than to simply sign it, I will not be admitted. I sign. What else am I going to do? My guess is that EVERY hospital has a similar admission form.

Friday, 6 November 1998

100 PLAZA CLINICAL LAB

Saturday, 7 November 1998

Involuntary uterine contractions begin. Kegal motions from contractions occur in vagina. They're strong.

Sex? Masturbation? No desire at all except a constant wondering over whether the desire will return when the pain dissipates.

Chocolate. So much candy left over from Halloween and I don't crave any of it. Not even the chocolate. Damn. I take a chocolate peanut butter cup from Brian's bag and take a bite. Yuck. I spit it out. Tastes like dirt. Oh God. Is the candy bad? Looks okay. Have my tastebuds been effected by the medicine or the surgery? Yeah, probably that's it. Oh shit. I can't decide whether this new distaste for chocolate is a bad thing or a good thing. Chocolate always satiated my sex drive previously (when Rich wasn't around...). But, if I don't even crave it any more, does that mean no sex cravings either? Ahhh!

Sunday, 8 November 1998

Middle of the night. I get up to write. My sinusitis turns from simple drainage to chest cold to bronchitis. Great. The coughing is now coming from deep in my chest and is unbearable. With each cough my uterus tenses and screams in pain. My back is killing me like it did pre-UAE. I'm so miserable and unable to control my fits of coughing that Rich gets desperate and starts digging through the medicine cabinets and first aid bag for something, anything, that I might be able to take.

It can't have aspirin in it. He's reading finely printed labels with incredible intensity while I just keep coughing.

Coughing is quickly joined by vomiting and uncontrollable spurts of urination. I don't know whether to sit down or stand up at the toilet.

I want to take some Alka-Seltzer Plus Cold Medicine to dry up the drainage--but it contains a lot of aspirin. Ugh.

Rich finds a box of Comtrex Maximum Strength Cold & Flu Relief tablets and gives them to me.

Monday, 9 November 1998

Dr. McLucas' new nurse calls me around 8:30 a.m.

"Hi Carla. Have you been checking your temperature?"

I liked this nurse from the first time I met her. It's so early in the morning and yet her cheerful tone is hard for me to respond to.

"No."

"So, you don't know if you have a fever?"

"No."

"Well, the doctor wants you to be taking your..."

"Look. Tell him he can go to hell."

"What?"

"On Friday when I came in for my post-op, Dr. McLucas didn't seem too concerned about what I had to say about my symptoms. Because of him, I was forced to find another physician on Friday who was willing to listen to me."

"I don't understand."

Her voice was audibly deflated.

"On Friday, I told Dr. McLucas that I was having problems with my vision. I have little to no peripheral vision and my distance vision is shot to hell. He told me that 'it wasn't his problem'. He told me to see my opthalmologist. I also told him I was having hot flashes--night sweats. All he did was tell the headset witch at the front desk to put me on the 'chronic' list for follow-up callbacks."

Pause. Lots of quiet on the line.

"Do you have any idea how that made me feel? Just because I'm having vision problems and hot sweats I go on his 'chronic' list. He wouldn't even help me at all. 'See an opthalmologist--that's not my problem' was the extent of his involvement. Tell him, verbatim, everything I've just told you. And then tell him I said to go to hell."

"Okay. I will. As soon as he gets in. I'm sorry."

"Me too. Bye."

Tuesday, 10 November 1998

Subject: Back on line!

Well, I'm back. But, I'm stilll having problems. . .like with my vision! I wear glasses and have bad distance vision as well as a need for reading glasses. Glasses usually correct my vision for both. However, the blood vessels that send the eye signal to the brain apparently have had "something" occur to them. They aren't working right and a flourescein angiograph showed some sort of disturbance. Who knows what it is?! Apparently not the doctors. Ugh. I'm back at work on limited release by my ophthalmologist. I'm a documentation specialist (my day consists of reading/writing ALL day) and I can't read much of anything without assistance! What a hoot.

I went in for post-op with Dr. McLucas on Friday and was even more appalled than I was previously. A one hour appointment where my husband and I sat and waited while the "God" did a multitude of other tasks. . . In the end, he did a cursory exam of the puncture site and then told me to schedule another appointment for 5 weeks. I had a list of problems and questions that my husband and I had brought with us--about 10 items--and I told McLucas that I needed to ask him about a few things.

1. My peripheral vison was GONE. No peripheral vision at all on Friday. And, my distance vision was blurry and my reading glasses were of no help at all for reading anymore. His response: That's not my problem. See your ophthalmologist. But I'm supposed to return to work on Monday and I can't even see well enough to drive.

His response: It's not something that occurs as part of this procedure. No one has ever complained of this before. It's not my problem. See your ophthalmologist.

2. Hot sweats. Horrific hot sweats. Why?

His response: Again, this is not something that women ususally experience after this procedure. We'll check your blood for a thyroid condition and your FSH levels and let you know on Monday. Anything else?

Believe me. I did not continue down my list. One look from my husband confirmed my own thoughts. I said "no" and we got up to leave. He followed us to the front desk and told the receptionist to put me on the "chronic" list for follow-up call backs and to schedule me for another appointment in 5 weeks. Then, he turned his back and walked off.

I didn't schedule the appointment and told the receptionist to not bother putting my name on the "chronic" list. We left.

My husband said, "Carla, if I had gone with you to the first appointment, you would not have returned to this doctor for the procedure. I, personally, would never have returned to him and I probably would have talked you out of it."

Thank goodness Dr. Goodwin is an ENTIRELY different sort of doctor. He has already referred me to a new doctor and has been instrumental in supporting me in getting the follow-up care I need.

As for the procedure. . .I'm pretty sure that about 4 hours post-op (after doctor and surgical nurse has gone home) that you could hear me crying in pain in the next state.

I also vaguely recall screaming at the nurses something like "Just kill me and get it over with. You're nothing but a bunch of sadistic witches anyways. . .". You see, they refused to follow the doctor's order on pain relief medication. They thought he had overordered and even refused to call him for verification. They called a resident on-call instead. I was pretty sure I wanted to kill him when he showed up and wanted to listen to my abdomen with his stethoscope! Two hours later (and after I had called my husband to get him to come to the hospital and then paged the doctor MYSELF), the resident finally approved 8 mg of morphine and sent the nurse in to shoot me in the butt. With an IV in my arm he ordered a shot from hell. . .I sent her packing and told her to ". . .send the little weasel in and let me explain to him how an IV works!"

She came back within minutes with an IV appropriate morphine dose.

They wanted to keep me a second night and Dr. Goodwin apologized profusely and promised a PCA pump of morphine. . .he just didn't want me to go home in so much pain. I refused. No way. Pain from hell and tortuous staff to boot. . .no thank you! After conferring with the UCLA Medical Center's pain management staff Dr. Goodwin finally agreed, unhappily, to apply Fentanyl Transdermal patches (3 of them) to my chest and let me go home.

This procedure is much too painful in it's aftermath to futz around with idiot savant nursing staff who don't comply with doctor's orders. I wouldn't recommend it to ANYONE without telling them to insist upon a PCA morphine pump attached immediately post-op and the only medication order to nurses would be for Motrin every 4 hours. No one deserves to go through what I did! Well, I can laugh about a lot of it now. The most severe pain has subsided and I have multiple refills for Darvocet just in case. But there still seems to be a long road ahead. No turning back now! :) carla

Wednesday, 11 November 1998

I had a final conversation with Dr. McLucas. It was interesting, at best. He indicated that no other woman in over 300 cases has had a concern about sex or had problems with their vision. I'm the first (according to him). He then asked me about my bladder problems. Odd. I haven't had any bladder problems! Apparently he was paying so little attention to me during my last visit that he wrote down bladder problems that didn't even exist. I politely raked him over the coals for his inattention and inability to listen to even the simplest of things during a patient visit. I told him that his multitude of phone calls and interruptions couldn't possibly allow him to practice medicine appropriately. Ugh. He didn't really know what to say. Two days later I received a short letter wishing me the best and hoping that my "sexuality returned soon". Oh god. The man didn't even get that right.

(Note: Nothing wrong with my "sexuality". . .but, it did take 4 weeks or so before I actually "felt" anything as a result of intercourse. And, even then, it wasn't a uterine orgasm. I've now concluded that they are gone forever. My research on the uterine artery and sexual response in women is coming up a little short but is starting to bear out and support my thoughts on the subject. Doctors aren't telling patients of this potential consequence and I'm none too happy about it.)

Other than that, my energy level is incredible. Amazing what a little redirected blood flow will do for a gal! I'm actually working out again and able to stay up past 7 p.m. at night. And, on Saturday I took my 7 and 11 year-old sons to Knott's Berry Farm and actually stayed all day! I've been wanting to do that for months but have had to cancel each time due to exhaustion. My husband works on Saturdays so the boys and I had always been active on Saturdays until about 6 months ago. Then, it just became impossible. My sons are thrilled that "I'm back!".

I'm also looking for a new job. The day after I returned to work, a woman whom I've always detested but who is in a position of power, saw the Dateline NBC story and asked me if I had "that new procedure". . .I said yes. She told me that I "deserved what I get" and that I had made a really stupid decision. My vision wasn't back to normal yet and I wasn't in the mood for crap. But, her comments left me speechless. Then, she went on the department attack. Three weeks later, I have a pile of memos regarding things my department "must correct" immediately and telling me exactly how I'm supposed to do it. I'm not sure what her problem is--but I know that I've had enough. I'm underpaid for what I do anyway and this kind of crap just cinched my thoughts of moving on. . .by Wednesday of last week I had a recruiter on the phone and a job interview for this week. Apparently, this procedure has given me a LOT of energy in a lot of other areas that I've been playing weenie about for far too long.!!!!!!

Friday, 13 November 1998

Monday, 16 November 1998

I arrive at Dr. Broder's at 9:05. This clinic appears to be part of the UCLA Hospital as opposed to how Dr. McLucas' office looked like a private practice completely apart from the UCLA Hospital.

The receptionist has me fill out the same forms I filled out for hospital admissions. She won't accept it when I cross out the first paragraph of the Medical Release information. I fill out a lot of insurance information and note that the office appears to be busy. Actually, mild chaos is probably a better description.

After the financial portion of the inquiry/approval is complete, I'm handed a medical history form to complete. Post-UAE I have no idea how to answer the questions on menstrual cycle. Prior to August I could have. Post-UAE I cannot. Nothing is normal today.

I complete the forms and am then told that I may go in and speak to Dr. Broder. He asks me to tell him the whole story. I try to. We discuss, back and forth, and it starts to become clear to me that he is not supportive of the UAE procedure. He talks about "new" and "experimental" and shows signs of disdain in his voice and face.

"Did anyone ever discuss myomectomy with you?"

I hesitate. Clearly, as this appears to be an infertility clinic of sorts, a myomectomy would have been his preference.

"Yes. Twice."

"And?"

"Neither gyn wanted to do the myomectomy."

"Why not?"

"Tumors too large. Or, so they said."

He smirks. I wonder if he's aware of the glib smirk that's on his face right now.

"Well, okay then."

He gets up and leads me to an exam room.

Tuesday, 17 November 1998

Scott C. Goodwin, M.D.
Chief, Angiography/Interventional Radiology Department of Radiological Sciences
UCLA Medical Center Center for the Health Sciences BL-423
10833 Le Conte Avenue
Los Angeles, CA 90095-1720

Dear Dr. Goodwin:

Apparently I am going to survive all pain and drug side effects from the UAE you performed (on November 2, 1998) and thought I would drop you a line to let you know that all is well (so far. . .). My eyesight appears to be returning to its prior state (blind as a bat but correctable with lenses) but I am still experiencing pronounced astigmatism.

Per your recommendation, I attempted to schedule an appointment with Dr. DeChurney. His office was not, however, able to add me to his current schedule. They scheduled me with Dr. Michael Broder instead and yesterday (Monday, November 16), I had my first appointment with him.

After about 30 minutes of discussing my medical history and the UAE procedure with Dr. Broder, it was more than obvious to me (those facial expressions will get you every time!) that he is not an advocate of UAE. Nonetheless, his conversation with me was open, competent, and knowledgeable and as a result, I liked him. We spent a considerable amount of time discussing post-operative "symptoms" and I am comfortable, for now, with the answers I received and the progress my body is making. (While the shrinking of the tumor is extremely desirable and does, in fact, make me happy, ecstatic euphoria for this procedure will only be achieved when/if sexual function/feeling returns . . . ).

Because Dr. Broder’s thoughts on UAE were somewhat transparent, I asked him, point blank, for his perspective on the procedure. It opened a door of communication that I think will be helpful to me (as his patient), as well as to him (as a gynecologist trying to understand why women make these ". . .silly . . ." choices). Indeed, "silly" was the word he specifically used. . . it stuck to my brain like jelly on a PBJ!

Well, some of my choices in life have been called a lot worse than "silly". . . I think I will survive his admonition! Besides, he was clearly frustrated at both my choice AND the gynecological medical community that led me to make that choice. In particular, the multitude of recommendations for hysterectomy that he also viewed as "silly."

After my appointment with Dr. Broder, I called, and subsequently "dropped in" on my Internist, Dr. Hilda Maldonado, to be treated for my sinusitis. We spoke briefly about UAE and she expressed an interest in obtaining additional information as she had had several patients broach the subject with her since my last appointment (in July). Since Dr. McLucas did not provide me with any printed literature on the subject of UAE, I simply sent her copies of everything I received from your office. You can, in all likelihood, anticipate a call from her.

It is rather unfortunate that the primary source of referral (to you) for this procedure is Dr. Bruce McLucas. One of the biggest reasons that gynecologists are screaming negatively about this procedure has to do with lack of a "true" controlled study by a gynecologist specifically tracking results over an extended period of time. The published journal reports (to date) are elemental and somewhat disappointing to even me, a lay person simply trying to make a decision. The medical questionnaire that Dr. McLucas uses in obtaining information on patients is not specifically designed to accumulate data on women pre-procedure and there simply is no follow-up questionnaire(s). From the information that I have been able to collect (from contact with approximately 75+ women around the world who have undergone this procedure) this is typical of most gynecological referrals for this procedure. And let’s not forget to add that Dr. McLucas did (at least in my case) "skew" the information received from me in an effort to ensure insurance coverage/approval.

It is my understanding that, as the Interventional Radiologist, your expertise lies with the actual embolization of the artery and not with gynecological concerns pre- or post operatively. You are relying heavily on the referring gynecologist to obtain information and follow patients post-operatively. I do not believe, however, that there is a single gynecologist doing this. While I recognize that you did ask a lot of questions of me that went beyond the performance of the procedure, and that there is a fair amount of literature on the use of UAE for uncontrollable hemorrhage, I do not believe that this constitutes a collective R & D effort resulting in detailed, factual data that can consistently be relied upon by gynecologists who have patients that would like referral for this procedure. It is my hope that you are able to identify a different gynecologist to work with that has a more comprehensive R & D perspective so that, together, a "true" controlled study may be conducted that would be readily accepted by the gynecological community.

As for me, you well know that back pain and retention of sexual function (per our discussion on uterine orgasm) were my primary concerns and the driving influence for requesting this procedure. A hysterectomy was simply not acceptable to me and every gynecologist that I had gone to in the previous 6 years had indicated that myomectomy was not something they would willingly do in my case (followed by detailed stories of hemorrhaging and potential death—all well delivered to make me amenable to hysterectomy).

What other options were there for me? Without a uterus, I figured my sex life would pretty much be relegated to a less than desirable state. (Believe me—I am not into one-sided sexual gratification—I don’t care how much I love my husband or how long we’ve been married!) But, with the growth of the tumor, the back pain was persistent and debilitating. During one week in July of this year, the back pain was so intense and unrelenting that I actually considered suicide as an option. The pain was simply not allowing my brain to think clearly.

I chose this procedure because I have 3 children whom I love dearly and who need me. My 17-year-old daughter picked up a phrase last year at college (she’s an academically gifted student/ballerina working on her BFA) that helped get me through the rough times. Something along the lines of ". . .no barfing, bleeding, or dying allowed. . ."—don’t laugh—even the simplest of mantras can help sustain you through the rough times! Basic survival for a teenager in college and not a bad reminder that even a mom could adhere to.

As for UAE specifically, I "knew" the tumors would shrink because of the online information that I had read and personal contacts that I had made. I "knew" it would be successful from the perspective of relieving my back pain (if, in fact, the pain was related to the tumor—the verdict is not in on this yet. . . ). I "knew" that with the retention of the uterus I stood a better chance of retaining my full sexual function than without it. But this "knowledge" was not based in fact—and not substantiated conclusively through any literature that I was able to obtain. Hell, as far as sexual function is concerned, I’ve come to believe that gynecologists have a standing "don’t ask, don’t tell" policy!

Arterial embolization has been used to control bleeding postpartum and with myomectomy complications for quite a substantial number of years; and, doctors are "presuming" that simply because a woman is able to get pregnant post-operatively that they must be "back to normal" sexually. Horse pucky. Their "presumptions" are not based in even the most remote iota of data—merely speculation. Who in the world taught these doctors that pregnancy is the bellwether of good sex? (Probably the same doctors who teach that there is no such thing as a uterine orgasm . . .) Enough ranting. I could go on for days so I better just stop for now. . . :)

I hope you are not offended by my observations and comments. I am not a medical professional so I, from that standpoint, may well be "missing a beat or two upstairs" on my overall comprehension of medical information. I have spent 20 years in technical R & D, however, and am thoroughly amazed at how far behind the medical community is on standard practices for the collection/evaluation of clinical data. Nonetheless, my comments are not intended to inflame—merely to give you a sense of the perspective that I, and many others like me, have. Besides—if you are offended, you are always welcome to call me and "put me in my place"!

Sincerely,
Carla G. Dionne

Dr. Hilda Maldonado
32144 Agoura Road, #106
Westlake Village, CA 91361 Dear

Dr. Maldonado:

Thank you for seeing me on such short notice yesterday (for sinusitis). I appreciate your availability and apologize for any delay it may have caused you in seeing your other patients.

During our conversation, you indicated an interest in obtaining additional information regarding the Uterine Artery Embolization (UAE) procedure. Enclosed you will find copies of several articles and journal re-prints which were given to me by Dr. Scott Goodwin’s staff. Dr. Goodwin performs UAEs at the UCLA Medical Center and can be contacted at the following:

Scott C. Goodwin, M.D.
Chief, Angiography/Interventional Radiology
Department of Radiological Sciences
UCLA Medical Center
Center for the Health Sciences BL-423
10833 Le Conte Avenue
Los Angeles, CA 90095-1720
phone: (310) 206-6777
fax: (310)206-2701
email: sgoodwin@mail.rad.ucla.edu
webaddress: http://www.radsci.ucla.edu:8000/news/fibroids.html

Per our discussion, I would like to reiterate that although Dr. Bruce McLucas was the referring gynecologist for this procedure for me, I simply could not recommend that you refer interested patients to Dr. McLucas. He is no longer my gynecologist and I am, in fact, in the process of filing a complaint with the Medical Board of California regarding a number of issues that came up during the time that I was under his care.

Please contact Dr. Scott Goodwin to obtain the names of (other) gynecologists that might be willing to refer patients for this procedure. As a side note: without Dr. Goodwin’s assistance you (or your patients) may find it extremely difficult to find a gynecologist that will refer a patient for this procedure. Currently, a majority of gynecologists are opposed to this procedure as a treatment for uterine fibroids. Most believe that a myomectomy (as a "known" procedure with a "predictable" outcome) is preferable. Others simply will not refer because of the amount of pain experienced post-operatively due to the onset of fibroid necrosis.

Personally, I find both sets of reasoning for non-referral amusing. Apparently, the "gynecologist of today" does not even remember the stir caused by the "gynecologist of yesterday" who first performed myomectomy! Odd. Especially considering that gynecologists who are not "Infertility Specialists" rarely recommend or perform myomectomy when uterine fibroids are involved. . .unless the woman wishes to become pregnant, of course.

As for the pain associated with the procedure, well, I can tell you in no uncertain terms that there is definitely pain! With proper analgesics and sedation (see "Uterine Arterial Embolization for the Management of Leiomyomas: Quality-of-Life Assessment and Clinical Response, p. 627), however, the pain can be managed.

So why do gynecologists use "pain" as a reason for non-referral? I’m not certain, but I think that there are gynecologists who actually believe the pain associated with myomectomy or hysterectomy is inconsequential by comparison... What I do know is that I have inquired and received numerous emails from gynecologists with websites (from across the United States) extolling the pain factor as a reason for non-referral.

Obviously, this procedure (as a means for treating uterine fibroids) is still in its infancy and somewhat controversial. Nonetheless, due to ongoing media exposure, more and more women are becoming aware of this option as a potentially viable treatment choice.

An additional informational resource is, of course, the Internet. There are a wide variety of support groups (mailing listservs) and websites for women seeking information on UAE and other alternative treatments to hysterectomy. I have enclosed a partial list of websites that I have accumulated over the past year. This list is in no way a personal endorsement for any or all website(s) listed but should be used as a "research" guide to obtain additional information on this (and other) procedure(s).

I hope this information is helpful to you. Please call me if you have any additional questions.

Sincerely,
Carla G. Dionne

Enclosures:
website list
Uterine Artery Embolization for Fibroids: Considerations in Patient Selection and Clinical Follow-up
Application of Particulate Arterial Embolization in the Treatment of Uterine Fibromyomata
Uterine artery embolization: An underused method of controlling pelvic hemorrhage
Preliminary Experience with Uterine Artery Embolization for Uterine Fibroids
Uterine Artery Embolization for the Treatment of Uterine Fibroids (discussion paper and Q & A)
Embolization Information (For patients desiring fertility)
Case History: Infection and Hysterectomy following Uterine Artery Embolization for Uterine Fibroids
Uterine Arterial Embolization for the Management of Leiomyomas: Quality-of-Life Assessment and Clinical Response
Alternatives to Hysterectomy (newspaper clipping)

Thursday, 19 November 1998

I begin inquiring of other IRs about sex post-UAE. I get this response from one of them today:

Subject: re: sex

>The only patients of mine who have commented on sex after their UAEs have been enthusastic in its improvement. I have no other answer for you from my experience. Have you discussed this with Dr. Goodwin or Dr. McLucas?

My reply:

I've discussed it (at length) with Dr. Goodwin. He had no definitive answers. Gyn issues are not usually brought back to him anymore than they are to you. . .in bits and pieces.

Dr. McLucas is no longer my gyn. I wanted to dump him the minute I met him but didn't know who else to go to that would refer to Dr. Goodwin. I "suffered" through him and his completely incompetent staff as long as I could -- but the closing ticket for me was the post-op check-up 5 days after the procedure. His total disinterest in me and my "chronic" complaints was unbearable.

You see, I had a problem with my vision (I know, I know--you haven't heard that one before. . .) post-op. I lost my peripheral vision entirely and my distance and close-up vision (I wear glasses for both) were both blurred and not correctable via my lenses. He sincerely did not give a hoot. "That's not normally something that happens as part of this procedure. See your ophthalmologist." And then he refused to give me another day off from work so that I could do just that.

In the end, Dr. Goodwin stepped in and authorized another day of leave do that I could see an ophthalmologist.

This was one of many, MANY items of concern over Dr. Bruce McLucas methods of practicing medicine.

The gyn I'm seeing now is a referral from Dr. Goodwin--but, he doesn't agree with the use of the procedure for this purpose. He's not really sure what the end result is going to be but has indicated that in his experience with women who have required embolization during a myomectomy, the uterus usually settles down after about 6 weeks of releasing cytotoxins into the system. In the meanwhile, most women feel like crap. Definite malaise. Contractions occur regularly post-op and can cause continued low back pain as well. (This was good to hear since I was surprised at how much my back continued to hurt post-op--apparently due to the uterine contractions.)

As for sex, he didn't really know. "Don't ask, don't tell" seems to be the gyns motto of today.

The assumption is: pregnancy=good sex. Geez. What an idiotic concept.

So, since you (someone who's performed quite a few of these) don't really know, and gyns don't seem to be asking, I guess I'll just have to wait and see. I guarantee you that women are interested in this procedure not because of ". . .some abstract notion of retaining their uterus. . ." (as I've read in so much of the written literature) but because of their desire to retain sexual function that would not be possible with a hysterectomy. If the truth bears out to be that sexual function is not retained. . .expect your clientele list to drop. Oh, there'll be women who'll still want this procedure over hysterectomy--but, not necessarily over myomectomy or other new procedures. Please let me know if you hear any other information from any of your gyn contacts--because right now I'm feeling pretty castrated. :( praying and hoping that time heals this wound. carla

Monday, 23 November 1998

I received a letter from Dr. McLucas on Friday asking me to call him. Two sentences. "Please call me regarding your test results. I hope your vision has improved."

So, like a fool, I called him. The man is a hopeless, heartless, worthless piece of ****. Sorry, I digress.

He starts off by asking me about my vision and whether or not I ever saw an ophthalmologist. Since that was 2 weeks ago and he's just now checking in with me, I was a bit sarcastic to him in response. . .to say the least. He asked for the ophthamologists' name and I told him that I had given that information to Dr. Goodwin since he (Dr. McLucas) didn't seem to care much the last time I saw him.

He then asked me about my bladder problems. I said "What bladder problems?" He said that I had complained about bladder problems when I saw him post-op. "No," I told him, "I did not. But, I did have a long list of other issues/questions that I wanted to ask you about but you were too busy with your multitude of phone calls and other paperwork on your desk to bother noticing that I actually wanted to talk to you."

"I'm sorry you feel that way Mrs. Dionne."

"I'm sorry too because you forced me to find another gynecologist who would take the time to talk with me and answer my questions. Since you are the primary gynecologist referring for this procedure I DO have a big question for you."

"Okay."

"Sex. I have no sexual feelings whatsoever during sex. . .nothing. I don't recall you ever mentioning that this was a problem with this procedure."

"Well, if you are having problems then this would be a first in over 300 cases that have come through me. I've never heard that there was a problem before."

I think to myself, this man is lying through his teeth. His tone of voice is wholly unbelievable and I know for a FACT that he never questioned me (on paper or in person) about my sexual habits prior to the procedure and that he made no attempt whatsoever to ask me about them post-procedure. In FACT, Dr. Goodwin asked 10 times more questions than this man did pre-UAE.

"Well, I am having problems. I feel lucky enough to say that my sexual partner and I have been together 20 years and we know each other very well. The poor man is desperate to make me feel something, anything. . .to no avail. You could say this is a problem."

"I'm sorry to hear that Mrs. Dionne. Hopefully this is only temporary. But I've never heard this complaint in over 300 cases."

Yeah. This statement sounds so familiar. Oh yeah. That's what he said about my vision too. Apparently it's the only answer he has. The man is either a fucking liar or he hasn't heard the complaint/question before because he hasn't asked. I simply do not believe that I, alone, am having this problem post-UAE. Simple physiology would dictate that any time a major uterine artery is cut off that the physical feelings generated by that artery (good or bad) would also have some net result change. Is the man really as daft as he sounds right now? Or, simply playing the denial game?

He proceeds with his end of the conversation and wishes me luck with my new gynecologist. Says something about ". . .needing to trust the doctor you're seeing. . ." and I interrupt him.

"This isn't about just trust. It's about attention too. In every visit I paid to you you never had enough time or attention to just talk to me. There was always another phone call or paperwork to shuffle or something on your computer. I had things that I wanted to discuss and questions to ask but was cut off and shuffled out before getting the chance."

"I'm sorry you feel that way Mrs. Dionne. . .".

I don't know what he said next. I hung up on him. I don't really care anymore. Contrary to popular opinion, doctors are not gods--at least not in my book. Although I've met and corresponded with a great many women who seem to want to put their doctor's scrawny asses up on some kind of deity pedestal, I simply do not understand it. Doctors are people and as such they are fallible. Some more than others. Run, don't walk from the doctors that don't capture your attention--how can anyone trust that their doctor has heard them if the physician is busy juggling half a dozen other tasks at the same time. If you're unsure, ask for a copy of your medical chart after the visit and read the medical scribblings that your doctor placed on your chart. See if (s)he heard you. Or, perhaps they've done what mine did: noted that I had a bladder problem when, in fact, I did not and ignored everything else I wanted to discuss.

Dr. McLucas:

Please transfer all of my medical records and lab reports, etc. to:

Dr. Michael Broder
UCLA OB/GYN Consultation Suite
200 Medical Plaza, Suite 430
Box 956928
Los Angeles, CA 90095-6928

Thank you.

Carla Dionne

Thursday, 26 November 1998

I begin taking Provera again. Not sure of the dates because of all of the random bleeding. But calculate a rough estimate.

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