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Legislation Reform Needed Update:
(September 7, 2004 to June 10, 2005)

 Hope Waltman 

Throughout this timeframe ALL my ultrasound and MRI test results came back confirming my September 2001 UAE was still “successful” (no new fibroids, uterus is normal size, and the 2005 MRI showed my dead fibroids had decreased a little since my 2003 MRI). 

I started to experience many female changes during this part of my journey.  My UAE was performed when I was 45 years of age and starting in August 2004, almost four (4) years later, I was starting to experience irregular/abnormal periods and spotting, which may not be related to fibroid sloughing. 

For a woman to fully relate to what was happening to me I need to go back in time and explain my menses background.  Pre UAE my periods were like clockwork 25-30 days between periods, and my period usually lasted around 5-7 days.  From age 45 – 48 years 10 months my periods have been irregular, which may be because of my age and changes going on within my body.  Post UAE  I had some periods that were regular, and I also had some that had 50-65 days span between periods.  So when I experienced spotting and going past 65 days I started to become concerned and charted my progress. 

August 2004, I had a period that lasted 21 days into the beginning of September.  The period was not overly heavy – just a lot of spotting.  October I didn’t have a period.  In November I experienced 7 days of spotting. 

December 2004 - January 29, 2005 I skipped a period.  January 30th I experienced severe cramping and brown discharge all day.  The next week I continued to experience medium cramps and discharge.  The severe cramps reminded me of when my fibroids were alive.  I made an appointment to see my Gyn (1st opinion) February 1st, and she performed a pelvic examination, looked at the calendar diary I gave her, and said I should have a Follicle-Stimulating Hormone (FSH) test performed (blood was drawn from my arm).

The FSH test came back with a 42.6 – postmenopausal range.   (FSH ‘ranges’ can vary from lab to lab.) Paul Indman, M.D. a Gyn in Los Gatos, CA.

I asked Dr. Paul Indman, a Gynecologist in Los Gatos, California, about FSH test levels.  Dr. Indman said, “First of all, the level can vary day to day.  Above 35 is considered menopausal and 20-35 is considered perimenopausal.  But again, the levels can fluctuate, so what you get on one day may not be the same as a week later.” (Photo - Paul Indman, M.D.) 

The symptoms of Perimenopause/Menopause are the following:  hot flashes, insomnia, fatigue, difficulty concentrating, urinary incontinence, and vaginal dryness.  To reduce the hot flashes stop smoking, limit hot and spicy foods, caffeine, and reduce stress if possible. 

Earlier on, I had been under the impression that menopause was the solution to all the ills of fibroids.  Recently, I have been receiving e-mails from women expressing to me that even after years of menopause their ‘bulk’ related symptom didn’t go away as they had hoped because the fibroids did not shrink enough to relieve the pressure.  

Robert Worthington-Kirsch is an Interventional Radiologist in Philadelphia, PA.I asked Dr. Robert Worthington-Kirsch, an Interventional Radiologist in Philadelphia, Pennsylvania, about this and he said, “In some cases UAE can be performed to help this symptom with good results.  The UAE causes the fibroids to soften and shrink enough to give the extra shrinkage that is needed to relieve the pressure.”   (Photo - Robert Worthington-Kirsch, M.D.) 

Dr. Francis Hutchins, Jr., mentioned, “The only other option would be surgery to remove the fibroid that is causing the bulk/pressure symptoms.” 

February 9th I started to feel more swelled up from water weight gain and I experienced more bleeding, so the Gyn wanted to see me for a consultation.  The male Gyn (2nd opinion) said, "The history of uterine fibroids and UAE would need to be taken into account when diagnosing my situation.”    The doctor ordered a transabdominal and transvaginal ultrasound to check for the following:  adhesions, polyps, new fibroids, fibroid sloughing, endometrial lining (hyperplasia – lining overgrowth), or it might be the menopause change (hormones) causing the bleeding.  (One new experience with this ultrasound was I didn’t have to drink fluids before the test, but I was restricted from urinating 2 hours before my appointment.)

I was quite surprised by the attitude of the 2nd Gyn when he said, “You know sometimes a UAE can turn into a hysterectomy.”  Another thing that did not impress me was when he didn’t get back to me with the ultrasound results even after he said he would call me within 36 hours.  After not hearing from the doctor's office for over two (2) weeks I called and talked to the nurse.  The nurse was very vague about what was on the ultrasound report.  The doctor NEVER contacted me!  I then called the ultrasound center for a copy of my ultrasound results. 

The February 11th ultrasound result was the following:  I had no new fibroids, the two fibroids were calcified (dead), and the size of the dead fibroids were essentially unchanged from the last ultrasound.  An increase in the size of the septated (‘simple’ cyst with a thin wall in the middle of the cyst) right ovarian cystic lesion was noted.   The ultrasound technician mentioned it looked like a hemorrahagic cyst (cyst has blood and blood clots inside of it, which usually dissolves after several weeks).  The results did not clearly note the ovary and the cyst dimensions. 

The left ovary could not be identified.  (It is not unusual for an ultrasound result to come back with “ovary could not be identified”.  One way to look at this is at least the ovary is not enlarged.  Sometimes during a pelvic exam one or both of the ovaries may not be able to be felt by the doctor.)  

The ultrasound report ‘ultrasound impression’ stated:   “Supplemental follow-up MRI would be useful in further characterizing these structures”.  

Hope's ultrasound photo of the Right Ovary - 2005

Hope's ultrasound photo of the Uterus - 2005

(Photos of Hope’s ultrasound – Top photo is the 'Right Ovary', bottom photo is the 'Uterus'.) 

The first two Gyns showed some resistance to UAE, and they both showed they were not capable of handling my medical case.  

Because my medical problem was not resolved, I decided to go to see Dr. Francis L. Hutchins, Jr., (3rd Gyn opinion).  Dr.  Hutchins is known for his expertise in second opinions for uterine fibroids and abnormal bleeding.  He is well versed on the UAHope's MRI photo of the Pelvis - 2005E procedure.  Dr. Hutchins said the ultrasound test did not clarify what was going on and he ordered an MRI.

March 31st I prepared for the MRI as follows:  I was told to stop drinking/eating 4 hours before the appointment.  Before the appointment, and when I arrived for my appointment (filling out paperwork) I was asked if I had any metallic surgical implants (some of them can actually be hazardous to the patient’s safety during the scanning).  (MRI Photo - Hope’s pelvis.) 

This was my first experience being in an enclosed High Focus MRI ‘tube’ (both ends of the MRI are open and two very slim lights are inside the tube).  I had to put on a robe (I didn’t have to take off my slacks because the waist band was elastic), and I was allowed to keep my blouse on because it didn’t contain metal.  I had to take my bra off because of the metal snaps.  I was asked what music I wanted to listen to and earphones were put on my ears – this was VERY helpful because the machine makes a lot of clanking sounds. 

I was told to keep my arms close together – folded over the chest.  A pad device was placed between my legs, and a belt device over my pelvic area.  During the testing you have to lay very still, so the technician put a pillow underneath my knees to take some of the discomfort off my lower back.   I was allowed to keep my wedding rings on my finger.  I took the rest of my jewelry off and gave it to my honey – husband.  It took about 45 minutes for the test scans to be completed. 

The last 10 minutes I was slid out of the MRI tube and given an injection of contrast (Magnevist) in my vein.  I was put back into the machine and was scanned with the contrast material (if you ever hear the term “MRI with & without contrast” this is what the doctor is talking about).  Physically, I didn’t feel any changes in my body from the contrast material.  The contrast only stays in your body for a short time and is released out of your body through your kidneys (urine) approximately 30 minutes after the injection.  (A few patients may have an allergic reaction to the contrast material.  If a woman has any questions about this she should ask the doctor or MRI technician.)  

The results from my MRI showed insignificant cystic changes.    Conclusion:  My two large fibroids showed a slight reduction since my 9-4-2003 MRI test.  Some cystic changes, but my right ovary is within normal limits. 

The week of May 6th I experienced breast soreness, cramps,  water weight gain and was surprised when my period or what I thought was a period started.  The bleeding during this menses was heavy enough to fill the super maxi pads.  I did have some tiny pieces of veiny tissue that came out with the blood.  (It is probably a good idea not to get rid of sanitary napkins until you are sure you are done with your period, which is usually considered one (1) full year without bleeding.  At first I was a little depressed about losing my period, I had it since I was age 9, but I can now understand how some women are so happy to be rid of their menses and to be in menopause that they have ‘pad burning’ parties.) 

After all I have experienced so far with this situation, I can also understand what my mother meant when she would talk about ‘having a change of life’ baby.  When your menses are so erratic you have no way of knowing if you are ovulating or not and it would be very easy to have a “surprise” announcement from the Gyn.

When a woman has abnormal/irregular menses the following two (2) tests may be ordered:  The first test is an ultrasound.  This test visualizes the endometrial stripe measurement to check for hyperplasia (uterine lining overgrowth increase of volume of a tissue or organ caused by the formation and growth of new cells).    My endometrium stripe measured 8 mm, which is too thick (the endometrium should not measure more than 4 mm).    

The measurement of the endometrium stripe is very important when a woman is in the menopausal stage of life because the cell structure, in some cases, can change to endometrial cancer (sometimes women will use the term uterine cancer).  

Another thing that menopausal women should keep an eye on is usually uterine fibroids are benign tumors (not cancers), BUT when you are menopausal and experience new fibroids growing or existing fibroids growing it is something that you should mention to your doctor ASAP.  In some cases, uterine fibroids can turn into pre-cancer or cancer after menopause.  So when a woman is around the menopause stage of life she has to keep an eye on abnormal bleeding and body changes.  Don’t be afraid to talk to the doctor about them!!! 

As a nurse once told me, “During my nurse’s training the first thing I was taught about medicine is the words NEVER and ALWAYS do not exist in the medical language.  A medical situation is NEVER going to happen is not correct.   Not ALWAYS will the medical cases be the same.  Every case has to be evaluated one at a time because two different people’s situations are seldom the same, even when they have the same medical condition – our bodies are unique.” 

May 27th I went to see Dr. Francis  L. Hutchins, Jr., an OB/Gyn in Philadelphia, Pennsylvania, for a physical and to have a second test performed,  an endometrial biopsy.  During this office visit the doctor asked me for a urine sample (pregnancy test).  Francis Hutchins, MD - Gynecologist Plymouth Meeting, PA (Philadelphia).(Photo - Francis L. Hutchins, Jr., M.D.) 

To prepare for the endometrial biopsy  I took one (1) antacid and four (4) Ibuprofen - 200mg each (a total of 800 mg) the evening before the appointment (this helps with the blood flow).  The next morning I had a light breakfast, and I took one (1) antacid and four (4) Motrin (200mg each) two (2) hours before my doctor’s appointment - (4 Ibuprofen work for 6 hours). 

Before I went in to talk to the doctor I told my wonderMike Waltman, Co-Founder and Marketing Directorful lifetime supporter, Mike, I wanted him to go into the office and examination room with me.  Mike asked me, “Do you think Dr. Hutchins would feel uncomfortable having me in the room while you are being examined and getting the endometrial biopsy?”  I said to Mike, “I don’t think so, I want you to be with me, and I will ask Dr. Hutchins if it is OK.”  Dr. Hutchins replied, “Sure, Mike can come in!”  After Dr. Hutchins was done asking me about my medical history and symptoms it was ‘our’ turn to ask questions/concerns.   (Photo on right is my husband, Mike.) 

The really pleasant nurse that helped me get ready for the examination mentioned, “I think it is really wonderful your husband is here to support you.”   She said, “Don’t you think women need this support?”  I replied, “Yes, I think it is very helpful and greatly needed.”  The way the examination room was set-up Mike was on the left of me and he was not able to see what the doctor was doing, which makes it comfortable for the husband and the patient.   

Another thing I feel is it is good to have someone with you to hear what the doctor is saying so later on you can discuss what information you might of missed (as a patient it is hard to remember everything that was discussed), and it helps the patient to keep calm.  I feel the experience helps to make our relationship closer because we share the good and the bad of life together, hand in hand.  In return, I give Mike the same respect back by being with him when he has to face a doctor visit or procedure. 

During the internal examination Dr. Hutchins asked me, “Do you have any problems with spotting?”  I told him, “Yes I have experienced spotting on several occasions.”  He saw a polyp on my cervix (Polyps can cause women to experience spotting problems.  They are solid structures that bleed when they are irritated in the cervix.).  Dr. Hutchins proceeded to take a forcep and twisted the polyp off of its stalk.   The stalk spasms quickly and stops bleeding after the doctor twists the polyp from its stalk.  I did not feel any pain or pressure during this process.  The polyp was about the size of a pencil eraser and was red in color.  Dr. Hutchins put the polyp in a container to be checked by the pathology lab. 

He then performed an endometrial biopsy by placing a small spaghetti size tube with a rough end on it into my cervix, which caused some cramping.  After it was inserted the rough end of the device was lightly scrapped along the endometrial lining to take a tissue sample (during this process I did experience some light cramps).  Not all women will experience cramps with this – it is just what I felt.   (In some cases a doctor may decide to use a hysteroscope, and perform a D&C to retrieve the endometrial cells.  Some times a woman and doctor may decide on a paracervical block, which requires four shots around the cervix.)   

After the procedure it is not unusual to have some spotting or bleeding, and maybe some cramps.  I did experience bleeding after my endometrial biopsy and I also hadWilliam Parker, M.D. a Gyn in Santa Monica, CA. some veiny tissue come out (this may be due to my endometrium is so thick).   I kept my doctor informed of the bleeding. 

In the book “A Gynecologist’s Second Opinion” Page # 317 Dr. William Parker, a Gynecologist in Santa Monica, California, mentions that a second opinion for the pathology results of an endometrial biopsy or D&C should be considered because a difference of opinion among pathologists can exist.  An experienced gynecologic pathologist may have more expertise in determining if the test result is hyperplasia, precancer or cancer cells.  Before the biopsy is taken it is good idea to discuss with your gynecologist about having the original glass slides sent to two labs, which will eliminate the woman from having a second endometrial biopsy or D&C performed.  (Photo - William Parker, M.D.) 

Mike asked Dr. Hutchins if the pathology lab results were questionable would he have the slides sent to a second pathologist?  Dr. Hutchins said, “Yes.” 

At the pathology lab the tissue is tested for abnormal cells such as pre-cancer or cancer cells; and to find out if the woman is still ovulating.   From this information a decision can then be made on how to get the endometrial lining back to normal size or if surgery is required. 

The doctor told me it would take about approximately 10 - 15 working days to get the results back from the lab.  I know during this timeframe the emotions can go from being worried to depressed to being nervous.  I think the best thing a woman can do to handle this situation is keep busy and try to be prepared for good or bad news.  During this period of time I found myself praying a lot and hoping that my biopsy did not come back with cancer results. 

Another thing I experienced during this timeframe is the questions I had in my mind concerning the following:  Did I do anything wrong through this timeframe that could of caught this earlier?  What could I have done better?  Is there anything I missed that would give women a heads up NOT to let it go this far? 

My dear friend Marie said, “Hope, quit beating yourself.  You did nothing wrong and you pursued it more than most women.   I know you need to hear it Francis L. Hutchins, Jr., M.D. in his office.from a doctor, and I hope you do soon!!   I have been in similar situations, so I understand where you are now with this situation.”  

June 10th Dr. Hutchins contacted me to explain the endometrial biopsy test results.  He said the following:  "Secretory Endometrium" which means you ovulated and explains the breast tenderness.  You are not fully menopausal yet and are ovulating but probably infrequently.   This will tend to cause some erratic cycles.  But observation is best at this point.  If you want to have this regulated the option would be to use birth control pills (BCP) for that purpose.”  (Photo - Francis L. Hutchins, Jr., M.D. in his office.)

I asked Dr. Hutchins, “Would the birth control pills help get rid of the extra thickness of the lining?  What do you think is the best way to go with this?  What kind of observation are we talking about (number of months)?” 

Dr. Hutchins replied, “The thick lining was due to the fact that you were still ovulating.  The thickness was an issue ONLY if you were in menopause.  The primary benefit of BCP's would be to regulate any bleeding you tend to have to eliminate any surprises.  IF you can tolerate it without the birth control pills then don't take anything.  Observe for 6 months and record your bleeding pattern and get back to me.” 

In closing I cannot express enough the importance of women finding a good doctor who has the medical expertise and knowledge needed to give a proper evaluation for abnormal bleeding. 

Women need to remember that NOT all doctors are the same when it comes to giving a proper evaluation, and knowing the correct medical techniques/treatments to use for the situation! 

Some additional information I want to share. 

Ovarian Cysts:  During this timeframe I had some questions about the cysts the ultrasound and MRI tests were detecting, and I thought the information I collected might help women with their research

What are Ovarian Cysts? 

Ovarian Cysts are filled with fluid, similar to a blister.  They are located on/in the Ovary, which is an organ that produces a follicle (egg) every month for the ovulation and menstrual cycles.  The two (2) Ovaries are located on the left and the right side of the Uterus. 

Uterus Illustration "permission by Francis Hutchins, Jr. M.D." The Fibroid Book 2nd Edition.

(Uterus and Ovary Diagram courtesy of Dr. Francis L. Hutchins, Jr., "The Fibroid Book 2nd Edition".)

I have included some photos of Ovarian Cysts and Uterine Fibroids  (Warning the photos are VERY graphic in nature.) 

Four (4) of the photos show a 6 cm cyst being surgically removed by a Laparoscopic procedure (the photos are “Used by permission of William Parker, M.D.” and cannot be reproduced or copied).   

Photos show uterine fibroids after surgery (the photos are “Used by permission of Francis Hutchins, M.D. and cannot be reproduced or copied).  (Refer to Ovarian Cysts & Uterine Fibroids photos.)

Fibroids - size of full term pregnancy (to photos).

How are cysts diagnosed? 

A pelvic examination by the doctor can detect a possible cyst.  Sometimes a doctor will order a vaginal ultrasound or Magnetic Resonance Imaging (MRI) to confirm if a cyst is causing abnormal bleeding/symptoms. 

A follow-up visit to check an Ovarian Cyst may be ordered by the doctor (usually 6-8 weeks after the last examination), which may include a pelvic examination or ultrasound test to see if the cyst has decreased due to the menstrual cycle (if the cyst measures approximately 2 cm or larger). 

Cysts Symptoms: 

Many times women are not aware they have a cyst.  Some of the symptoms of cysts are a bulk-feeling or dull ache in the pelvic area. The lower pelvic section may experience slight swelling.   Actual pain may occur if a cyst bursts or if it twists and block its own blood supply.

Cysts can cause menses to be delayed or be irregular.   It is not unusual for women who have had cysts in the past to have recurrences of cysts.  If this happens medication, Birth Control Pills 'may' be an option to help prevent new cysts from forming.   If a woman experiences any of the symptoms listed above she should mention them to the doctor as soon as possible. 

Cyst Treatments: 

For cyst treatments it is critical that a woman has a “good discussion with her doctor” about what is going on with the ovarian cysts (sometimes it isn’t a cyst, but ovarian cancer, etc.).  

If a cyst has a ‘solid’ area showing on the ultrasound results, causes severe pain, continues to grow, or doesn’t go away by itself within eight (8) weeks a Gynecologist may decide to perform an outpatient Laparoscopic procedure called a ‘Cystectomy’ (this treatment has a quick recovery period).  The procedure is performed by creating two (2) small incisions near the navel and the pubic bone.  A small telescope device is inserted into the abdomen so the doctor can look at the ovaries and cyst(s).  With this procedure the doctor can stop the cyst from bleeding, check for infection, drain the fluid from the cyst, take a sample of the tissue, or surgically remove the cyst. 

In ‘rare’ cases a cyst can destroy the Ovary tissue.  When this happens the Ovary may not be able to be surgically repaired, and may have to be removed. 

Uterine Artery Embolization is not a treatment option for Ovarian Cysts. 

Is a Hysterectomy one of the treatments for cysts? 

Some gynecologists suggest hysterectomy for benign cysts, but I do not agree.  They often tell the patient – “it might be cancer”, but we can almost always tell now with a good ultrasound. 

If it is cancer, 'yes' a hysterectomy should be done. 

If it looks benign (not cancerous), then laparoscopic removal of just the cyst is all that needs to be done.  If it is unclear from the ultrasound, then the ovary can be removed (I usually do this laparoscopically) and sent for frozen section (immediate pathology).  If the cyst is benign, we are finished and the patient goes home the same day.  If it is cancer, an abdominal incision is made and the uterus and other ovary are removed (I have never had to do this in 26 years of practice). – William Parker, M.D.   

"Ovarian Conservation at the Time of Hysterectomy for Benign Disease",William H. Parker, MD, Michael S. Broder, MD, MPH, Zhimei Liu, PhD, Donna Shoupe, MD, Cindy Farquhar, MD, and Jonathan S. Berek, MD, MMSc;  American College of Obstetricians & Gynecologists: Vol. 106, No. 2,  August 2005, 219-226.   Websites:  Entrez PubMed  or acog.org.

"Dogma, Skepsis, and the Analytic Method The Role of Prophylactic Oophorectomy at the Time of Hysterectomy", David L. Olive, MD; American College of Obstetricians & Gynecologists: Vol. 106, No. 2,  August 2005, 214-215

Again, if a woman has any questions or concerns about ovarian cysts (ovarian cancer), uterine fibroids, or abnormal bleeding problems or treatments she should discuss them with the doctor ASAP so she can make an informed decision and/or go for a second opinion. 

Medical Terms & Definitions 

To find other medical terms: www.medterms.com/script/main/hp.asp

If you have any questions after reading “My Journey” update, please feel free to contact me. – Hope

"My Journey" will be updated as needed.

To Hope's Bibliography.
 

Hope Waltman, Founder and Fibroid patient

Hope Waltman

Founder, Hope For Fibroids, Inc.

OBGYN.net Fibroid Resource Center Discussion Group Moderator (2006 Video Interview)

 NEW   Hope Waltman interview: "The Endangered Uterus" by Peg Rosen
MORE Magazine, December 2008/January 2009, Pages 117-121 157-158


Bibliography


To contact Hope for an interview or research project.

Ovarian Cysts Information

Fibroid Photos

Articles

Part 1 - Uterine Fibroid Disease:  My One-Year Journey From Discovery To Recovery (published)

Part 2 - Uterine Fibroid Disease:  My One-Year Journey From Discovery To Recovery

My Journey:  Post UAE 1 Year to 20 Months

My Journey:  Post UAE 20 Months to 25 Months
In My Experience The Benefits of Tai Chi (and UAE)  (published)
My Journey:  Post UAE 25 Months to 3 Years
My Journey:  Post UAE 3 Years to 3 Years 9 Months  (Abnormal Bleeding)
2006: Continuing Physician Education:
Seen Through The Eyes Of A Fibroid Support Group (article)
 

 

 

 

 

 

 

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Legal Note:  The material presented on Hope For Fibroids, Inc. web site is for informational purposes only.  It is not meant to be a substitute for physician care.  If you need medical advice on uterine fibroid disease or other medical conditions you should discuss them with a physician.
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