It’s My 1st Hysterversary! My Life One Year Post Adenomyosis!

It’s My 1st Hysterversary + a Health Update!

<  You can read my full story and watch my video montage here –
https://ducksinarow55.wordpress.com/2015/06/16/my-journey-with-endometriosis-adenomyosis/  >

To quickly summarize –

In 2009, I began to have debilitating symptoms of endometriosis. My local doctors told me that I would likely always be in pain, need surgery most every year, and probably never get off hormones.

In June 2010, after losing almost a year of my life, I traveled to Atlanta, Georgia for advanced excision surgery with Dr. Ken Sinervo.
The surgery was immensely successful and absolutely restored my quality of life. Post surgery, I was able to get off the hormones.
I went on to be pain free for years during which time I became pregnant and subsequently delivered a daughter.

To date, I have not had a recurrence of endometriosis (currently 5.5 years and counting).
<  To read more about endometriosis and advanced excision – http://www.centerforendometriosiscare.com/understanding-endometriosis/  >

In 2014, I developed severe symptoms of a uterine disease called adenomyosis.
Once mistakenly called “endometriosis interna”, adenomyosis has since been found to be a pathologically different condition than endometriosis.

Endometriosis by definition is tissue that is similar to *but not the same as* endometrial cells being found outside of the uterus.

Adenomyosis, on the other hand, occurs when actual endometrial cells penetrate the muscular layer of the uterus (called the myometrium). This typically results in an enlarged, inflamed, blood clot expelling, contracting uterus. In other words, blood. Blood everywhere. Back pain. Uterine contractions equivalent to those in un-medicated childbirth (I delivered my daughter with no drugs so I know exactly what those feel like – there were moments with adenomyosis that I thought I was about to birth my uterus). The mid-line (dead center) area of my pelvis felt as if I was carrying around a hot and heavy bowling ball.

While there are some treatment choices that aim to lessen the severity of the symptoms, the only cure for adenomyosis is a hysterectomy.   (It’s critical to note that, as endometriosis and adenomyosis are not the same condition, a hyster is a cure for *adenomyosis* but it is NOT a cure for endometriosis).
<  You can read more about adenomyosis here  –  http://centerforendo.com/articles/adenomyosis.htm  –  and a fantastic article on the indications for a hysterectomy can be found here – http://www.centerforendo.com/cecarticles.htm (once at the site, scroll down and click on “What are the Indications for Hysterectomy”) >

My husband and I discussed our options with my primary care physician, the OB/GYN who had delivered my daughter, and my advanced gynecological surgeon.
Ultimately, it was decided that a hysterectomy was my best option. I returned to Dr S and, on December 30, 2014, at the age of 25, I had a hysterectomy for adenomyosis. I was thrilled to confirm that there was *no endometriosis anywhere* (4.5 years post excision). This wasn’t a surprise to me as I wasn’t having symptoms that I would attribute to endo.

It’s a common misconception that a hysterectomy means that the surgeon removes everything. Uterus, cervix, tubes, ovaries, whole kit and caboodle. This is actually incorrect. The term “hysterectomy” has diddly squat to do with your ovaries and/or tubes. Nothing. Nada. Zilch.
A hysterectomy simply refers to your uterus – “total” meaning uterus+cervix, “subtotal” or “supra-cervical” meaning removing the uterus and leaving the cervix behind. Removal of any other organs, while this may or may not be done during the same surgery, are different procedures.

In my case, for my adenomyosis, I had what’s called a “Total Laparoscopic Hysterectomy” which means that my surgeon went in laparoscopically and removed my uterus and my cervix. He made an incision in my belly button, as well as two small fingernail sized incisions along the bikini line. I also had a prophylactic bilateral salpingectomy (both fallopian tubes removed as a preventive measure against cancer) during the surgery. I retained both of my ovaries which has allowed me to continue to be free of hormones. I do not currently take any hormonal suppression or hormonal replacement therapies.
< To read more about prophylactic bilateral salpingectomy – http://www.acog.org/About-ACOG/News-Room/News-Releases/2013/Growing-Acceptance-of-Removing-Fallopian-Tubes >

I found the hyster recovery to be difficult – it was definitely a one day at a time process. The recovery was filled with many wonderful things.
To name a few – Insomnia. Hormonal mood swings from hell – my ovaries threw a temper tantrum and went into “shock” after the surgery – the adjustment period was brutal. Pain – apparently there is a reason they call it major surgery – who knew?!? My newly formed vaginal cuff took after the rest of me and healed superrrrrrrr slowlyyyyyyyyy …. promptly resulting in the need for silver nitrate at my 6 week post op check up.
If you don’t know what that is, well, uh, basically the area where your cervix used to be is chemically cauterized. In the office. While you are awake.
Men have no idea how well they have it.

I finally recovered after what felt like forrreeevverrrrr and was released from my restrictions in February 2015.
In June 2015, I celebrated 5 years endometriosis free with my amazing and super supportive husband.

Throughout my recovery and into 2015, while I wasn’t in much pain (for me, it was merely uncomfortable at times), I did have some residual soreness as well as bladder spasms. Ditropan was a lifesaver for my bladder spasms, however, it really isn’t a long term solution so my surgeon encouraged me to consider pelvic floor physical therapy.
He might have um, mentioned *before* the surgery that I was having some pelvic muscle issues and he might have possibly suggested then that I see a physical therapist.
There’s a teensy chance I didn’t listen. Whoops.

To be honest, I thought it was quackery and didn’t have plans to pursue it.
Eventually though, I decided to give it a try.

Despite some insurance deductible holdups and a lack of local providers,
I located a fantastic pelvic floor physical therapist. In another state.
I somehow talked my husband into traveling with me to check it out.
Even then, I wasn’t convinced that I would get any benefit from it.
In fact, my leading argument for traveling was that I would determine it to be nonsense and that we would only have to make the trip once.
That wasn’t exactly the result – just ask my husband. 🙂

My PT discovered that my pelvic floor muscles were very weak, I had trigger points and that I was definitely having muscle spasms. <  Read more about pelvic floor dysfunction here – http://www.centerforendometriosiscare.com/728/  >

She helped me to begin retraining and strengthening my pelvic floor.
My skepticism disappeared in one visit and I quickly became a believer.
Visit #8 saw me being able to cut my ditropan dosage in half.
We made that trip weekly for 3 months before I was discharged from PT (with instructions to continue at home exercises and to call if needed).
She and I both believe that I will soon be off of the bladder medication entirely. My opinion of PT has completely changed – I’ve come to believe that its a good idea post childbirth and/or pelvic surgery even if you don’t have pelvic floor dysfunction.

So, in the end, that 1 trip turned into 13. Oh, my poor poor husband.
Overall though, things are going very well. I continue to be free of any symptoms of endometriosis and am looking forward to hitting the
6 year endometriosis free milestone/excisionversary in June 2016.
I’m recently discharged from pelvic floor physical therapy.
In addition, today, December 30, 2015, I’m marking my first hysterversary and celebrating a year free from adenomyosis.

-Rebecca

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About ducksinarow55

Wife. Mommy. Endometriosis/Adenomyosis/Bell's Palsy warrior. Advocate for advanced excision surgery as the gold standard treatment for endometriosis. My posts will include my personal journey with both endometriosis and adenomyosis, as well as links to resources by reputable endometriosis/adenomyosis sites (ie. Endometriosis Research Center, World Endometriosis Research Foundation, etc). Follow me on twitter - twitter.com/rlgibson
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3 Responses to It’s My 1st Hysterversary! My Life One Year Post Adenomyosis!

  1. Just to let you know, I tried to click on the link: http://www.centerforendo.com/articles/indicationsforhysterectomy.pdf%C2%A0 and it gave a “404 error”, so I wasn’t able to access that article at this time.

    Like

  2. Pingback: Understanding Hysterectomy | Endometriosis, Adenomyosis, Pelvic Floor Dysfunction

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