As I write this update, I can’t believe it has been three (3) years since I had my SUCCESSFUL Uterine Artery Embolization procedure performed (September 6, 2001).  I feel at this time it is important to compare how my quality-of-life was affected before and after UAE, which was approximately a 5-½ year timeframe.

Many women have e-mailed me asking questions about the fibroid symptoms and how do they know they have fibroids.  I am going to use a comparison of before and after to hopefully help women distinguish what is a symptom and how severe a symptom may or may not be for their situation.

Urination:  Before UAE it would take approximately 30 minutes or more for me to feel like I had emptied my bladder enough so I could start on a road trip.  I could go to the bathroom and after 10 minutes feel like I had to go again.  I had to stop drinking fluids 2 hours before bedtime because I knew this would add more trips to the bathroom (I was already up 1 – 3 times every night going to the bathroom).  At every ultrasound test my kidneys were checked because fibroids can affect kidney function.  Fortunately mine was not affected.

Post UAE - I can sleep through the night without getting up to urinate, drink fluids before bedtime, go on road trips for several hours before needing to take a bathroom break, play a round of golf, which usually takes around 4 – 4 ½ hours with only one bathroom visit!   

Sex and Climaxes:  Before UAE I really enjoyed sex, but in 2000 (one year before I was diagnosed with fibroids) I noticed when I was getting to the part of having an orgasm and the contractions were starting I would start having sharp pains.  I tried to pretend I didn’t feel them, but it became hard to ignore.  

After UAE  - Many women have asked me about sex and climaxes after my procedure.  For the first month or two I had a lot of discharge/sloughing of fibroid tissue and needless to say this disrupted my sexual fun.  When I did start becoming active again, I noticed I would get a reddish/pinkish discharge and go right into my period (this happened occasionally for about a month/two months).  I also noticed that I couldn’t get any sensation for a climax at that time.  The loss of feeling scared me and I asked my IR about it. 

Dr. Kirsch explained the temporary loss of climax and bleeding after intercourse as follows:  “We (Interventional Radiologist’s) try to avoid or minimize getting emboli into the cervico-vaginal (c-v) branch of the uterine artery.  However, the clitoris is supplied by the vaginal artery, so even if the c-v branch is embolized it usually makes little or no difference. 

Transient changes in sexual experience can happen after any manipulation (surgery or procedure) of the pelvis. The three (3) research projects presented to date on sexual experience after UAE have all shown fairly positive results – with decrease in sexual experience being rare after UAE and recovery.” 

Dr. Parker said,  “Some doctors (Gynecologist’s) feel that the artery to the clitoris may be either temporarily or permanently disturbed as a result of UAE.  The discharge is like the fluid that forms with a burn blister, called serum, which oozes out of the uterine lining cells as a result of injury from UAE.  However, I am not sure why bleeding would start only after intercourse.” 

I feel part of my problem was created by a mental block.  The fear apparently started to create a shield to stop me from feeling pleasure because emotionally/physically I knew the pain would start.  This was one of the hardest parts to get over – it took a lot of concentration and talking myself through it.  The loss of sensation gradually faded, I got over the mental/physical fear factor, and by four months I had all the sensation back in my clitoris.  Intercourse is great again!!!!  

Bowels:   This is another symptom that slowly creeps up on you as the fibroids/uterus grow.  Depending on the location of the fibroids the bowels can be affected.  I noticed that sometimes I had a hard time with constipation.  Another thing I noticed, before my UAE, was the size of my “personal deposits” were really small and about the size of a thin small finger.  After UAE the fibroids and uterus kept shrinking, which caused the “personal deposits” to became larger and longer in size. 

Bloating/bulk feeling:  Before UAE I had a problem with feeling bloated.  My whole body seemed to suffer from the bloating (hands, feet, stomach).  The fibroids also created a bulk feeling that was continuing to push further up under my ribs.  This started to become quite painful and unpleasant.  It also caused my clothes to become tight and uncomfortable.  Eventually, I had to change the style of clothes I was wearing as well as increase the clothes size.  My original Gyn prescribed water pills for the bloating.  He said to take the pills 10 days before my period to help relieve the water retention and this seemed to help with the labor type pain spasms I was experiencing from my fibroids.  The labor type pain spasms usually occurred around my ovulation and my period.  

Dr. Parker said, “The uterus does engorge with blood around the time of the period, so it is possible that the water pill decreased the degree of engorgement and, therefore, helped with the cramps.”

Post UAE - I don’t have the extreme bloating feeling around my period or ovulation, the labor type pain spasms, the bulk feeling, or huge amount of puffiness around the ribs.  My body is becoming more sculptured, and I now have a distinctive waistline.  For my stomach area, I only have one tiny bulge to get rid of (I feel diet and exercise will take care of this).  My body structure is more straight in the front and back – before I had such a huge stomach that protruded as well as my buttocks  (it gave the appearance of being 4 months pregnant).  Needless to say I hated the look and feeling of my body being out of control and not being able to get it back no matter how much dieting or exercise I did.

Menses:  Before UAE I had what I thought were normal periods with medium/heavy bleeding accompanied with a lot of huge blood clots.  I never thought to talk to my Gyn about this and now I know that wasn’t completely normal for my situation.  I still continue to get my period after UAE.  The cycle of days range from 23 to 65 days between periods.  The bleeding is medium to light, and most of the days I use a light pad (before UAE most of my period I had to use the heavy overnight pads for 5 days during my typical 7 day period).  The blood clots I used to experience pre UAE are very rare now.  If I do experience an occasional blood clot it is small in size. 

I still experience occasional sloughing of fibroid tissue at post UAE 36 months. In May 2004, I had a very brief episode of sloughing fibroid tissue.  It was during my period and was over very quickly.  The pieces of tissue have been small in size and the bleeding has been lighter than the previous years.  Dr. Kirsch says, “ I am within normal recovery range, and it is VERY rare for a woman to experience sloughing at post UAE 36 months.”   I don’t have to get an ultrasound/MRI test because it isn’t necessary. 

Energy/Stamina:  Before UAE the “vampire” fibroids kept feasting on my blood supply.  As they increased in size and the symptoms increased I experienced a lack of sleep, this was due to the cramps during my ovulation/period and bathroom visits, which caused my energy/stamina to gradually decrease.  Another problem that I ran into was anemia, which was caused by the huge amount of blood loss during my periods.  

Associated with the anemia symptom is the “cost and embarrassment” issue.  Fibroids can sometimes create huge bursts of bleeding, which causes sanitary pads/tampons to overflow.   It can get to be quite expensive buying multiple packages of pads/tampons for one period.   I also hated the fact I had to carry a full days supply of pads in my huge purse because I never knew when the “big burst” was going to happen.  I experienced many episodes of embarrassing moments when my clothes were soiled with blood, and I bled on furniture cushions.  The blood stains ruined a lot of my favorite clothes, which can get to be very expensive because you have to go out and buy new ones.    

I loved wearing colorful light pastel colors, but eventually the light colored clothes stayed in my closet.   I was tired of wearing dark slacks and skirts around that time of the month (before, during, and/or after my period because I never knew for sure when I might experience a bleeding episode).   I started to feel like I was always going to a funeral and people were describing me as the “lady in black”.  In a way that was exactly what was happening – the black/dark clothes represented the death of the true Hope and the taking over of the uninvited fibroids – THEY were winning.  Even though at the time these things were very annoying to me I now see they also gave me a feeling of the fibroids controlling my desired lifestyle and me.  

After UAE my energy/stamina increased because I no longer have the lack of sleep, multiple bathroom visits, or anemia.  The iron pills and diet slowly corrected the anemia problem.  UAE is known for reducing the blood loss during the menses.   I rarely experience having blood stains on my clothes, which is really nice.   I no longer go through more than one package of pads/tampons for one period.  In fact, I have pads/tampons left over from one package, which I can use for the next month's period!!  I can enjoy wearing the light pastel color clothes, and using my small purses again. 

Another category associated with the embarrassment feeling is “self-image/pride”.  Dr. Kirsch once answered a question about fibroids, exercise, and weight gain (My Journey Part 2).  Today, I can finally admit my feelings about his answer to that question.  When I asked him that question and he gave the response “ I think that many women with problems from fibroids also have poor self-image and are unable to get a lot of exercise.” it really made me mad and it deeply hurt me.  I now know and realize that his answer was correct.  Yes, the poor self-image and not being able to do little things like reaching the floor with my fingers, seeing my feet, or tying my shoestrings did eventually take a toll on my self-image/ego.  I know there are many of you out there feeling the same emotions – just remember you are not alone – there are many of us who have or are experiencing it.

Infertility:  Uterine fibroids, on occasion, can cause miscarriages or infertility problems. 

I was diagnosed with uterine fibroids in my early/mid-40’s when pregnancy was no longer an issue in my life.  However, I can relate to pregnancy because in my earlier years I experienced how it feels to go through a full-term pregnancy and at the birth be surprised to have a stillborn delivery.  I can also relate to how women feel about wanting a child.  Joy’s passing was not caused by fibroids.

For women who are having problems having a child – NEVER give up researching new options and getting a second or third opinion.   My biggest regret, I hope none of you ever have to experience this, is I wish I had researched harder.  Remember if something is that important in your life ‘make the time - make the effort’ to pursue it with all of your heart!!

There are many doctors who are highly experienced in infertility issues, Myomectomy, and Uterine Artery Embolization procedures that may be able to help a woman with uterine fibroid disease. 

One issue, that is often forgotten when discussing the quality-of-life, is how fibroid disease affects the “spouse/family relationship”.  Pre UAE my husband, Mike, experienced the anger, pain, lack of stamina to do everyday chores, and personality changes/mood swings as the fibroids grew and eventually took over his wife’s life.  He hated the feeling of being powerless when it came to fixing the problem.  After UAE we are both happy to be relieved of all the stress this medical condition can cause in a relationship and it has helped us to become closer as a couple.

Please remember as you read this article that women, who are NOT experiencing uterine fibroid symptoms, can live with uterine fibroids without getting any medical intervention.

For the women who have symptoms:  When you start experiencing the body changes mentioned in this article, it is time to wake up!!!  Study all the treatment options, ask your doctor questions, and be prepared to make a decision ‘if’ it becomes necessary.  I am telling you this because I did the preparation work.  I researched and asked questions; my fibroids started growing at an alarming rate; my symptoms grew in intensity; Hope’s life she loved was gone; I couldn’t wait for menopause (early/mid 50’s) because of the pain/symptoms; I made a decision on a treatment – UAE.

I was afraid that one day I would wake up in an emergency room with a strange doctor, having a blood transfusion performed, having a fibroid treatment I didn’t want (major surgery – hysterectomy), or worse, bleeding that never stopped.   I write this information not to scare you, but to prepare you – all these thoughts went through my head and I am sure some of you may have them deeply embedded in your own mind.

I hope the before and after comparison will help women to watch for body changes that should be noted and discussed at a doctor visit.  NEVER be afraid to talk to your doctor.  If your doctor is a good doctor, you should be able to feel comfortable enough to tell him/her anything.

May 2004, I was sadly disappointed to learn my new Gynecologist, Dr. Wayne White, was leaving his medical practice in Pennsylvania to start a new practice in New Hampshire.  The expensive medical liability insurance in Pennsylvania had taken its toll on his practice (it is affecting multiple doctors in Pennsylvania as well as other states).  When he left I felt abandoned and hurt.  There was such a big void left behind because I had grown to trust his experience and expertise with my UAE.   

Dr. Hutchins helped me understand why Dr. White left.  He said, “The main problem for all OB/GYNs is that the malpractice rates are so high and the reimbursement, primarily from managed care companies, are so low that the only feasible way to practice largely is as an employee of a hospital.  The problem is most hospitals do not employ physicians.” 

I am at this point starting a new patient/doctor relationship.  It is always hard to start over when it comes to this medical area.  Woman are very shy about opening up that personal area to a doctor and when you have to change doctors multiple times it is like starting at the ground level of emotion each time. 

Being involved with this Organization has blessed me with the opportunity of hearing both sides – the patients and the doctors.  It saddens me to see that both sides, in most cases, want to help each other. 

There are great doctors who volunteer their knowledge and expertise to help women, and then you have on the reverse spectrum the so-so doctors who just don’t get it.  Some doctors have dedicated their whole life’s career on training and experience so they can give more options to their patients.  

On the patient side, I hear over and over women wanting their Gyns to smile and accept them back with open arms after their UAEs.  Unfortunately, more times than I can count, this isn’t what happens.  The pain in their voices, their e-mail messages, and/or eyes shows the sadness, hurt, and anger that never leaves their hearts.  One thing that is becoming more prevalent is women are giving up going to ‘specialist’ doctors (Gyns) and relying on family physicians.  I question if women will get the proper medical care when they need it from this medical field.  

In conclusion, women must understand that not all doctors are the same.  Women should research/verify the doctor’s education, training, expertise, experience, and success rate with the treatments/techniques they perform.  Another factor to research/check is the physician’s knowledge of new procedures.  Is the doctor open minded about referring a patient to another doctor to perform a procedure they are not trained in?   

Dr. Paul Indman said, “Unfortunately there is no standard physician training requirement for some of the fibroid procedures.  Expertise in doing the procedure varies widely from physician to physician.” 

If a woman has a great doctor she should make sure to let the physician know how much she appreciates him/her because she is very fortunate to be under the care of a good physician!!  Women should never feel bad about looking for a new Gyn or Interventional Radiologist if they feel they need to.  Every woman should remember they have the right to “fire” their doctor!! 

I would like to share with you an e-mail I received in June 2004, that really hits home how others view uterine fibroids.   A loving mother who was worried about her daughter’s severe fibroid symptoms wrote the following e-mail.  She said, “Thanks so much for sharing your personal testimony about fibroids. Through your testimony I was able to understand the untold agony of fibroids. May God bless your endeavors to help women with fibroids, as I never realized all the obstacles they encounter.” 

I wish each one reading “My Journey” the best in their research and doctor consultations.   

It is so great to be now on the other side….. 

Sincerely,

Hope 

Suggestions for bloodstains and heavy bleeding:  A friend told me Peroxide is great for removing bloodstains.   For the heavy bleeding, 'Serenity' pads (bladder control pads) or 'Depends' panties give a secure feeling compared to using tampons and heavy/night-time pads together. 

Refer to Yale and Georgetown University Studies on intercourse after Uterine Fibroid Embolization:  “Uterine Fibroid Embolization Doesn’t Hurt, May Help Women’s Sex Lives”  -  Public Communications, Inc.  (pcipr.com/newsroom_archive/SIR/20010306_ufesex.asp). 

Contributors to the article

My Journey:  Post UAE 3 Years to 3 Years 9 Months (Abnormal Bleeding)