My Hysterectomy

Warning: This blog is personal, as you can probably gather by the title.  In the year since I knew I was having this surgery I have been met with a lot of questions about why I had it a month after turning 36.   I am writing it to answer some of the "why" questions I've been asked and to relate my experience before, during and after.  If you'd rather not read about "female stuff" I completely understand and am warning you so you can close your browser now :)  Honestly, I feel a little weird posting something this personal on the internet, but at the same time it's something I've openly discussed with many people in the past few months and I find there are a lot of questions from women my age so I'm happy to educate based on what I've learned.




The long story short is I've had female problems since puberty.  For years several remedies have been prescribed or recommended, but they've all been band-aids and I'd never found an answer to the "Why?" question I've asked countless doctors over the years.

I'd often heard that after having kids things can regulate themselves.  From 12/05-12/09 I was pregnant or nursing all but a few months so I didn't really know if things were getting better or not.  I had a few good months after I'd stopped nursing my second and I was excited.  I had also done a lot of reading about peri-menopause and how a woman's late 30's and 40's can get fairly inconvenient in the years leading up to menopause.

A few months before my 35th birthday things started getting wonky again (or for me--normal).   At my annual exam that year I mentioned it to my PCP and she ordered an ultrasound to rule out fibroids.  My ultrasound didn't show anything unusual, so my PCP sent me to a gynecologist (one I had never seen.  I no longer saw my OB after the birth of my second).

This particular gynecologist was not very patient friendly (actually he was a jerk).  At first he just tried saying "If you think things are bad now wait until your 40's". This doctor wasn't listening and before I knew it I had a Mirena IUD, even though I had said repeatedly I did not want to be on artificial hormones.  My husband and I had already made a permanent birth control decision so I wasn't using this for that purpose.  I went in for a consult with that Dr. and ended up with it before I really had time to think or process since he presented it as my only option and made me make an immediate decision.  For several reasons I walked out of that appointment knowing I would NEVER see that particular Dr. again.  It truly was a horrible experience.  (Thankfully a few months ago I received notice he is leaving that facility).

Immediately I had "buyer's remorse".  When I started experiencing negative side effects I called another gynecologist's office (where several of my friends go) about having it removed.  Because I'd only had it a few weeks I was told to "give it time" and was told "If you just want to stop bleeding have an ablation".   I tried explaining to the nurse practitioner (couldn't see the OB/GYN) what I had explained to the gynecologist who gave me the Mirena--I wasn't looking to treat the symptoms--I wanted to treat the (unknown) cause, but she didn't listen any better than the first gynecologist I saw in this journey.

The Mirena was implanted in August and by mid-October I was breaking out in red, itchy welts.  At first the welts came and went and were confined just to part of my legs.  Initially I thought they were bug bites.  I even washed all our bedding, vacuumed the mattress, vacuumed the box spring, etc. thinking they might be bed bugs since the welts tended to appear in the morning (which I've still never seen, thankfully!!!!).  My husband pointed out that if they had been bed bugs he'd have bites, too and he didn't.

I couldn't predict when I would have them so I couldn't make an appointment with my PCP.  Finally, one night they were bothering me so bad I went to my first ever visit to urgent care.  The Dr. at urgent care told me I had hives and asked if I was on medication.  I said, "No", but then remembered the Mirena and asked him if that could be the cause.  The urgent care Dr. didn't know what Mirena was, and after I explained it, he told me that couldn't be the cause.  I got home and went to Mirena's website where it states hives are a possible side effect.  I was allergic to Mirena and it was making my life absolutely miserable.

I made an appointment with my PCP immediately and explained everything to her.  Because my Dr. is an internist and not a gynecologist she couldn't take it out so I went back to the see the gyno that several of my friends see.  By this time it was nearly a month after my visit to the urgent care and there were days I my entire stomach, bottom, arms and legs were covered in what looked like one giant welt/hive.  To say I was miserable was an understatement.  When (a different) nurse practitioner removed my Mirena she said "Since you only have this for bleeding we can do an ablation here in the office." and she sent me home with information.

For several months I was back to my "normal", extremely miserable cycle.  Because I was desperate I went back to my friends' gyno.  Again I wasn't able to see the Dr., but saw someone else (not sure if she was a nurse practitioner or a physician's assistant).  Either way she, like the others in the office, kept pushing ablation.  Every time I visited that office I really felt pressured to have the ablation and I was growing increasingly leery of the practice, even though it comes highly recommended by friends.

Desperate for answers I decided to follow through with the necessary steps toward ablation, even though I didn't feel totally comfortable with the idea.  (Interestingly enough, when I went to the Dr. who ended up giving me the Mirena I went in looking for an ablation, but further research about the procedure, it's success rate and the unknown long term affects had me concerned).  I made an appointment for an ultrasound to start the process.  In 3 visits to the office I never met the Dr.

In the days between making the appointment for the ultrasound and the day of it, my husband was talking to a friend and somehow the subject of their wives medical journeys came up.  This person's wife had been having horrendous female issues that made mine look normal.  This person's wife even ended up in the ER several times and ended up with a doctor she loved, at the same medical facility where I had encountered the initial Dr. that I had no desire to ever see again.  As my husband was telling me this story I asked him to find out the name of the doctor that his friend's wife was seeing.  I called to make an appointment with that Dr. and was told he only does gynecologic oncology (thankfully this other woman wasn't seeing him for that, but she was definitely needing more specialized care than I was).   The scheduler said, "We have two general gynecologists you could see."  One was the person I had vowed never to see again and the other was a female.  I wouldn't have cared if the other Dr. was Martian because I wasn't seeing the first one again.

The first appointment she had available was the same day I'd arranged childcare to have the ultrasound done at the office where all my friends go.  I made the appointment with the new Dr. and cancelled my ultrasound.  By this time it was about mid-April.

As soon as I saw the new Dr. and explained to her what had been going on since puberty and more recently she immediately said, "I know what's probably going on.  You probably have adenomyosis.   I know because I had it and your story is exactly like mine".  (Some definitions, including the one linked say "adeno" is most commonly developed in middle age and after having had kids--mine has probably been around my entire life.  Other definitions say it's most common in women who have had C-sections.  I avoided a C-section with both of my deliveries).   This Dr. also told me that because of where adenomyosis is there is no way to actually test for it or see it until a hysterectomy is done.  A hysterectomy is the only cure.  This Dr. also told me that if I'd gone ahead with the ablation I would probably be one of the 1/3 of women who describe their periods as "normal" after the procedure.

I was THRILLED meeting with this Dr. because she actually listened to me and presented a reason, instead of just trying to mask the symptoms as every other Dr. had since I was in jr. high and high school. Yes, the solution was drastic, but at least it would be a real solution to a real and not just a band-aid. The new Dr. scheduled another ultrasound to make sure I didn't have fibroids so, for the second time in a year, I was being checked for fibroids.  Just as the previous ultrasound showed, there were none.  After everything came back clear the Dr. called me herself (not a nurse or receptionist) and told me my next step was to meet with a gynecologic surgeon.  That appointment was the beginning of May.

The surgeon agreed with the adenomyosis diagnosis and we talked about hysterectomy in detail and she answered my questions.  We talked about the surgery itself, the recovery, the technique she would use, etc.  She explained to me options and left the ball in my court telling me to go home, think about it, and let her know what I decided.  This appointment was a week before my 36th birthday and nearly a year after I'd actively started the journey of trying to diagnose (and solve) the problems that had plagued me for over 20 years.

A few days later I called the scheduler and had my surgery date: Monday, June 18, the day after Father's Day.

The surgery was supposed to be outpatient, but because I had a 3 year old and a 5 year old my surgeon decided to have me stay overnight because she knew I'd rest better at the hospital than at home :)  Because I hadn't had any C-sections and because of the reason for my surgery I was a candidate for having mine done vaginally and not having any incisions.

I am a WIMP when it comes to pain and I was seriously scared of what was to come.  I didn't believe the surgeon when she told me the recovery from my type of surgery would be easy because I was thinking "Um . . . you've never met me.  I'm a WIMP."

I spent Monday night in the hospital and was taking some pretty hard core pain killers after my surgery and through the night. There were times I was in serious pain and counting down until I could get more medication.  Tuesday morning I was given 2 percoset and those managed my pain.   Tuesday afternoon I was given 2 more just before being discharged.  I took one more at home before bed on Tuesday night.   Wednesday morning I took 800mg of ibuprofen and by Friday I didn't even need that anymore, which absolutely blew me away!  My friends were surprised to see me at church Saturday, but I was feeling so great there wasn't any reason to make myself stay home.

After surgery the surgeon told my husband she found adenomyosis and some fibroids that had been hiding during my previous ultrasounds.  My surgeon later told me the same thing and also told me my uterus was "enlarged and boggy".   At my 6 week follow up I received the pathology report that showed my uterus was 130 grams.  For a little perspective, my surgeon explained to me that an "average" uterus is 70 grams so mine was  basically twice the size it "should" be.  Between it being 2x the normal size, the hidden fibroids and the adenomyosis I felt extremely justified in having had the surgery.

The most inconvenient part of my surgery and recovery was not being able to go swimming for 6 weeks in the middle of a Phoenix summer  (my restrictions were essentially the same as if I'd had given birth via C-section).

I was even teaching 20 3 year olds at Vacation Bible School 3 weeks post-op!  (By the way, that I DON'T recommend because I was in pretty serious pain that week and it definitely fell into the "overdoing it" category but they were desperate for teachers and I thought I was recovered enough to help)

Next month will be 1 year since my surgery date and life has been great since.   I'm incredibly thankful for that conversation my husband had with his friend that led me to the Dr. who finally listened and gave me a diagnosis instead of just trying to mask the symptoms as so many others have done.

I have left out some details, but hope that this takes some of the mystery out of something that seems so shocking to most women.  When I've mentioned my surgery to other women the general comment I receive is is "I'm sorry."  I'm not sorry for myself, because my surgery was done on my terms (after my husband and I had already decided we were done having kids) and because it's made my quality of life so much better.  

I completely understand that for some women whose hands have been forced for them and whose surgeries where not in their plan or timing (complications from childbirth that required it, a cancer diagnosis, etc.) that it is a much different situation and my heart breaks for them because I can't fathom the emotional pain they've experienced.   I truly am sorry for them.

As I write this I can think of several women I know/know of who fall into these categories, including one who needed a gestational carrier for her second two pregnancies and I know that was EXTREMELY difficult for her.  In writing this I have tried to be sensitive to the pain of women whose chance at carrying their own children has been taken from them prematurely.