Hysterectomy: It ain't peachy but it isn't life-ending

HysterSisters, the organization dedicated to education of the surgery and recovery, sent me an email this morning with my one-year checkpoint.  Yep.  It's been a year since my hysterectomy.  I was walking through the cancer center at a local hospital last night reflecting.  Tears came to my eyes as I remembered the process I went through to make the decision to have the surgery.  The recovery process wasn't a walk in the park either.

Hysterectomy: Hustera- womb/ ectomy-surgical removal.  When I first researched the surgery after learning it was the best option to remove the cancer, I learned that in the old days it was believed that hysterics came from a wandering or a troubled uterus.  In the 19th century, hysterectomy was the treatment for hysteria.  Of course this isn't true nowadays but doctors are still quick to prescribe hysterectomy as the answer to many female-related problems.

In my initial research, I came across an upsetting video made by an extremist organization that is very against hysterectomies.  It was their video that made me break down a few days after my first gynecologic oncology appointment.  It was their video that made me feel that maybe it's better to let the cancer kill me before letting any medical professional come close to my uterus.

I do agree with the organization's concern that doctors are quick to do hysterectomies.  It has become the routine treatment for different female-related issues just like they did in the 19th century to treat hysteria!  HysterSisters also supports the belief that hysterectomy is not always the best option.  It is a major surgery and as with any major surgeries, there are risks.  In the HysterSisters' literature, they suggest information on alternative treatments for different conditions and diseases that many gynecologists might be too quick to skip to surgery when it should be the last resort.  I remember reading their information and looked under cancer.  Unfortunately, hysterectomy is the only treatment for cancer.  There are no optimal alternatives.  That was difficult for me to swallow.  Once I accepted that surgery was the best route to prolong my life, the very idea of the surgery affected my psyche.  I spoke with women who had the surgery before menopause and learned that many of them do go on to have healthy lives.  A big plus was not having menstrual cramps or menstruation.  I learned that their sexuality was not affected.  For those who had ovaries removed, there was a period of adjustment.  A friend who had the surgery told me that it became more about healing the mind not just the body.  The idea of the surgery can easily mess with a woman's head.  Heck, it's the reproductive system as well as the sexual parts that have to go.  It was something that I couldn't let go of... I was okay with the idea of doctors taking my breasts away or other parts of the body if it was necessary.  BUT my reproductive system... no, no, no!!!

HysterSisters was a wonderful source of support leading up to the surgery and during the recovery progress.  I established a profile with them which included the date of my surgery and the method.  There are several ways to do a hysterectomy.  Mine was the daVinci method with removal of fallopian tubes, uterus, and cervix via the vagina.  I was put in a support group of women who had the surgery the same week I did.  We connected on our recovery process.  It was so helpful to know I was not alone when I was trying to understand parts of my recovery.  We talked on a daily basis for about two months then communications slowly stopped.  The support group members pretty much have gone into our separate ways as we have healed from our surgeries.  HysterSisters also sent me regular emails with checkpoints.  I had one each week then it became once a month up until six months.  Then I didn't hear from them again until this morning.

"A year is behind you, and the anniversary of your surgery is here. We hope that during the past year you have been able to concentrate on your health and find new ways to enjoy life, re-framing it with the joy of life's blessings alongside the challenges you've faced."

Now that the year has passed and I have greater understanding of the surgery, I find that some of that organization's claims are not valid.  It was time for me to watch the video again and dissect it further. It was reassuring to see how far I have come.  I couldn't handle watching it last year.  Today, I am able to watch it and disagree.  I think it is about finding the right surgeon and verifying that they have done a good number of this type of surgery.  As with any surgery, there are risks.  I suffered with one of the rare risks- infection that haunted me for so long.  I am listing their claims from the video and my responses.  This is a post I wish I had access to while trying to decide if the surgery was the best route for me.  Fortunately, I had one dear friend who had hysterectomy done before menopause and she was willing to tell me A to Z, answering every single one of my question.  Hysterectomy is a private surgery for many but how do we better prepare for other women who need it if there's not enough openess?

1. The uterus lies in between the bladder and the bowel.  Thus there will be a loss of control of urination and bowel movements, or even possibly chronic constipation.  Bladder and urinary problems are common after the surgery.  Without an uterus in place, the bowel can bulge down creating a rectocele which is ballooning of the bowel into the vagina.

This was one of the things that scared me but after talking with women who had the surgery, this is generally not true.  Yes there are some cases where women are affected by adhesions from the surgery.  They do have repair surgeries to address the issues.  Those issues are very rare.  That's why women are strongly encouraged to follow the recovery guidelines to the letter.  I was told to do my Kegel and pelvic floor exercises as well to help with rebuilding of muscles in that area.   I was frustrated that I couldn't do much for the first six weeks following the surgery but it was to ensure that I don't have any problems such as those.  Those in my HysterSisters group had some problems because they pushed themselves too soon.  

As for constipation, I had to deal with those after each of three surgeries I had last year but that's from the anesthesia and pain medications.  I am pretty regular.  Urinary tract infection is a common infection immediately following the surgery.  I had that in April last year which was treated with antibiotics.  I was advised to take cranberry supplement to help with the recovery process.  I am happy to report that everything is working quite well.  

2. The skeletal structure would be affected since ligaments would be severed in the removal of the uterus.  Essentially, the rib cage will fall onto the hip bones compressing the spine.  Thus the woman would lose the 'waist'.

So far I still have my waist.  I guess that's a good thing, ha!  My rib cage hasn't fallen.  My spine isn't compressed.  Yes, there were some discomfort and soreness in the back, hips, and pelvis after the surgery.  I was given a list of exercises to help re-build strength in those areas.  Yoga has been a godsend.

3. Because the nerves are severed, sensation would be lost in the vagina, clitoris, labia, and nipples.

This was a concern of mine but after talking with other women, I learned this is not true.  I can still feel sensation.  Many women report that sex is much more pleasurable after the surgery.  I don't understand how nipples come into the claim here because those are in a different part of the body.  

4. Women are unable to walk and sit because nerves are severed which causes a searing pain down the buttock through the knees.

I still love to walk a lot.  I still love to hike.  I sit a lot for work and academic work (unfortunately).  I am tempted to buy one of those desks with an attached treadmill.  Yes, it was hard to sit after the surgery because there was so much pain in that area.  I had a pillow to sit on.  It didn't help that I had an infection afterwards which made it harder to sit.  Now that all of that is in the past, I do feel comfortable.  I don't have any pain when I walk or sit.

5. Uterine orgasms would be gone forever.  (But later on in the video, they said that it will be missed by women who had uterine orgasms before the surgery).

This continues to be a topic of interest to me.  The female orgasm is a complicated one.  I think it's an individual experience.  Not every woman has the same experience.  I spoke with women who had the surgery.  I spoke with sexual experts.  They say that the orgasms begin within the clitoris and/or the vagina which cause the pelvic muscles to contract.  Women who had the surgery had the uterus removed but not their pelvic muscles.  Many women I spoke with say that it takes time for them to explore sexually to feel comfortable again but sex is usually much better after the surgery.

6. Sexual feeling will be lost.

I think this depends on whether the ovaries are removed.  It is true for many menopausal women to have sexual changes when menstruation stops.  There was a woman in my HysterSisters group who had lost her sexual feelings.  I'm not sure why but this is rare.  Later on in the process, she admitted that she had a bad surgeon who also caused other complications for her.  Dr. Jewell, who I ended up choosing and trusted to do my hysterectomy, assured me again and again that I would be fine sexually.  I do still have the drive.  It boils down to finding the right partner who is willing to explore with me.  We'll see what's in the store for me in the future. 

6.  Ovaries produce hormones for the entire lifetime.  75% of women who undergo a hysterectomy also under go an oophorectomy (removal of ovaries).  The medical term of removal of gonads (ovaries/ testes) is castration.

This is sadly true.  I was surprised to meet gynecologists who thought it was okay to remove ovaries as well.  There are significant risks involved.  The first two oncologists I met were quick to say that ovaries would have to go as well.  The third one, Dr. Jewell, said that if the ovaries are fine then she wouldn't want to remove them.  I tested negative for ovarian cancer.  She warned me on the day of the surgery that if the ovaries looked bad, she would have to remove them.  The goal was to keep at least one.  Losing ovaries mean a 50% overall higher risk of mortality along with numerous health risks including heart disease, osteoporosis, and breast cancer.  Ovaries also contribute to the sexual health.  Oophorectomy is essentially castration.  I have been criticized for being stubborn about keeping my ovaries.  Have you ever heard of men getting their balls cut off on a regular basis?  No.  It's a no-no.  That should be applied to ovaries.   I understand there are unique circumstances that actually require removal of ovaries and testes.  I have been a strong advocate since then for women to fight for their ovaries or at least one as many women were rushed into the surgery without having any time to research the consequences of losing their ovaries. A previous post discussed the importance of keeping ovaries: http://naomicancerjourney.blogspot.com/2015_09_01_archive.html.

7. Hysterectomy that involves removal of uterus and cervix vaginally results into a gap where the cervix once was.  This hole has to be sewn shut creating a closed pocket and a shortened vagina.

This was one of the things that scared me.  A shortened vagina!?!  This is possible that this was true in the past but surgical techniques have improved a lot since then. I do not have a shortened vagina. It feels pretty much the same.  I used to have a vaginal canal.  Now it's called a vaginal cuff.  Dr. Jewell sewed the cuff at the end where the cervix once was.  It is different finding no cervical stump at the end but I've gotten used to that.  Everything else in the vagina remains intact.

8.  Sometime the sutures do not hold resulting into a vaginal prolapse out of the vaginal opening.  This is basically like a turned out pocket.

I grilled Dr. Jewell about this before my surgery.  She said that this rarely happens.   It could happen because recovery guidelines were not followed to the letter.  Even if this does happen, repair surgeries are done.  I also believe that it depends on the surgeon to make sure the vaginal cuff is closed and secured correctly.

9. Laparoscopic hysterectomy takes longer than other hysterectomy surgeries because the abdomen is inflated with gas creating stress on the body.

True.  My abdomen was blown up to be about two times bigger than a pregnant woman who reached full-term (40 weeks).  Recovering from the gas inflation was no easy feat.  I was gassy for days.  I felt sore in my abdomen as if I was trying to catch my breath.  I had a swollen belly for at least six months.  However, the benefits of doing a robotic-assisted laparoscopic hysterectomy outweigh the cons.  The other route is total abdominal hysterectomy which means the abdomen is cut open.  A longer hospital stay is required.  Recovery is much longer and harder.  Today I have five small incisions across my abdomen from the daVinci robotic surgery.  Two of them are actually hard to spot now.  

10. Hysterectomy causes the following: loss of vitality, joint pain, profound fatigue, personality change, loss of stamina, loss of short term memory, loss of ability to socialize, insomnia, suicidal thoughts, unable to maintain previous employment, loss of maternal feeling, and loss of ability to maintain activity in the home.

As with any major surgery, the loss of vitality is evident.  It takes time for the person to recover from the surgery.  I was tired all the time and sleeping a lot for weeks.  It's not just the hysterectomy itself.  When I was recovering from the infection, I was also tired.  When all of my medical issues were resolved (recovered from the hysterectomy and the infection was gone), I was feeling pretty great.  I have my stamina back.  I feel great today.  I am active.  I am working out.  I am working with a renewed sense of energy again.  My mind is alert. I'm eager and passionate to enjoy my life.  This evening I had a great yoga class.  I was able to do a backbend, handstand, headstand, and shoulderstand just fine.  

No joint pains here.  It's about maintaining an active lifestyle.  

Personality change... I do not feel the hysterectomy changed my personality.  I am still caring, funny, adventurous, dedicated, determined, and nerdy.  For anyone to go through a difficult disease, there is a changed perspective on life.  I had cancer and that changed my view on many matters.  The essence of Naomi remains though.  

My memory remains intact.  I have a darn good memory.  I am more nervous about the aging effects on my memory though! I'm approaching age 40! Dang!

I still socialize.  I enjoy my time with friends.  I enjoy connecting with people.  

Sleeping continues to be a challenge for me because I still can't get my busy mind to quiet down!  It was an issue before my hysterectomy and still is an issue.  In fact I miss the first few weeks after the surgery because I was really sleeping!  I slept so much because I was actually tired!  I think insomnia is caused by various factors and it is irrational to make hysterectomy the sole cause.  

Suicidal thoughts come from the the feeling of despair.  I don't think the surgery causes it.  Like I said earlier, the surgery does mess with the woman's mind.  It's so hard to go through a major change like that.  Loss of reproductive ability can hit a woman so hard especially if the woman is still of a child-bearing age.  I think the real issue lies with how the woman choose to respond.  Yes I had initial struggles with the surgery.  I choose to respond in a way that I am blessed I am still alive and that I am in remission.  I think it's an individual choice to be happy.  I choose to be happy.   The cancer taught me that quality life is even more important than ever so I made a lot of changes in my life to ensure a quality life and I'm in a good place right now.  

I still have my job!  I am still doing my freelance work as well.  It WAS difficult to return to work which is true for any major surgery.  It took me a few weeks to get back on the horse, so to speak.  I love what I do for living.  I think this is tied to attitude towards the surgery.  If the woman is depressed and lifeless, then a job will be lost.

I have never been a biological mother of a human child.  But... as I learned, I do have maternal instinct.  I discussed this in depth in a previous post: http://naomicancerjourney.blogspot.com/2015/04/emotional-recovery.html.  I am a mom of a furkid, Chocolate.  I am very maternal with him.  That was true before the hysterectomy and still the same afterwards.  

Again, activity in the home is tied to attitude.  I still do my own thing daily.  I am grateful that now that I am recovered from the surgery and infection, there's so much more I can do now! 

That video truthfully terrified me.  It was through research and experience that made me learn that hysterectomy is a difficult surgery but life doesn't have to be different afterwards.  During my research, I did contact this organization asking what their recommendations are for women with cancer.  They said there are gynecologic oncologists that can help me stay on hormone therapy for life just to keep my uterus, cervix, and tubes.  I did explore that avenue.  Hormone therapy was the pits!  I couldn't imagine the rest of my life with daily nosebleeds, being out of breath from walking Chocolate around the block, continually gaining weight/ feeling bloated,  loss of appetite, feeling dehydrated, unpredictable mood swings, and ultimately developing diabetes.   Yes, it sucked that I had to undergo the hysterectomy at a young age.  It was a difficult experience.  On top of it all, I had to deal with a rare side effect of the surgery-- the infection!!  The infection developed because my vaginal wall was perforated during the surgery which was also rare.  Alas, I just bought myself a lot more mileage in life... quality life!  No synthetic hormones!  Cancer cells are gone.

Tonight I found comfort in ending the yoga class with savasana (corpse pose).  I placed a sandbag on the top of my pelvis.  This used to be a favorite thing for me before the hysterectomy.  I haven't done it since then.  I decided it was fitting that I gave it another try on the anniversary of the surgery.  It was so comfortable and I got lost in my meditation.  Life is good.  Onward.

Celebrations

It's been a while...

It is difficult to write when I am traveling and dealing with unexpected stuff that come up.  Life is always full of curveballs.  Whether it is cancer or something else.  I just gotta keep on rolling with it.  I am truly blessed that I am still alive and kickin' to be able to face life head on.  Each day comes with a lesson, big or small.  I keep on learning each day.

I saw my doctor yesterday.  I was nervous that I might have to face the big bad monster, "Silver Nitrate," once again.   Nope.  The wound has finally healed.  That little stubborn part is merely a scrape now and will heal in couple of weeks.  Whew.  Finally.  The infection began haunting me mid-April last year.  I joked with a few friends that because the wound was in a wet, dark place, I might heal faster if I just went to live in a nudist colony for a while. There's no need for that now.  Almost a year later, I am done.  Phew.  Earlier this week, I got news that I won the last one of five appeals against my insurance company.  All the bills related to all of my surgeries and treatments in 2015 have been closed forever.  Now I can move forward.

As for the Lynch Syndrome question... genetic testing was done on the polyps found in my uterus by Memorial Sloan Kettering Cancer Center.  My doctor explained what was done: "They did special stains on your initial pathology to look for Lynch using a technique called immunohistochemistry.  This test looks for expression of four proteins that if missing can mean you have Lynch.  In your case the proteins were all expressed.  The option after that, if you want, is to do formal genetic testing where your DNA is checked for mutations that could be sometimes be missed despite the normal expression of the proteins."

I decided that I would like to meet with the genetic counselor.  In the past year, several doctors highly recommended genetic testing to make sure I don't have any further risks.  If I do, I can take action sooner.  While I was trying to decide, I was stuck on the fence-- ignorance can be bliss.  At the same time, I don't want the ignorance to kill me.  The bigger question is... will my insurance pay for the genetic testing?  Maybe not.  It is worthwhile to explore that avenue.

While I was dealing with recovering from the hysterectomy and fighting the post-surgical infection, I was rushing to meet deadlines that the editors gave me.  The first draft of the manuscript was actually submitted in May 2014.  I forgot all about it.  In May 2015, the editors said it was time to begin the editing stage.  It was a back-and-forth process as I worked on the paper.  At one point, my co-author got injured and hospitalized that she couldn't do anything.  I was on pain medication.  I decided to get off the pain medication just to write and edit while I was in pain.  What a wild ride that was.  The final draft was submitted at the end of November.  I remember feeling relieved.  I wouldn't recommend working on a publishing a paper while dealing with all the medical stuff but... I made it.  It was an opportunity that I couldn't pass up.  My very first research study in print.  The book was released last month.  I feel damn good.

Life has its ups and downs constantly.  I am just moving forward.  I dealt with cancer, the infection, and waiting what felt like forever for the wound (hole) to heal.  It is time to see what the next chapter is all about.  I do not know what lies ahead.  What I have survived so far keeps on making me stronger for what is coming ahead.