Thursday, February 11, 2016

A more personal journey...

A week ago I was in surgery.  It seems like so long ago already.  I don't always post about such personal things, but I feel like i need to write about this.  Just once.  For a woman, a hysterectomy is one of those life events that splits time into "before" and "after."   Like puberty, a wedding or giving birth.  A feminine milestone that almost 20% of women will experience.  If you're a man and you haven't already clicked away, you may not want to read further.  Or maybe you will.  It's estimated that 1 in 10 women suffer from endometriosis, 2 in 10 from fibroids and 10 in 10 deal with various "female" and hormonal issues. I think it would be much better for everyone if we all talked about it a bit more openly. 

The endometrium is the tissue that lines the uterus and reacts to hormones each month during menstruation.  Endometriosis is when that tissue is found outside of the uterus, usually within the abdomen.  It's like glue and causes organs and structures to stick together.  In addition, the tissue bleeds each month causing inflammation and scarring.  

Symptoms vary but include chronic pain and heavy bleeding.  It is a common cause of infertility.  It is also difficult to diagnose and can only be confirmed with surgery.  There is no cure for endometriosis, but various treatments to deal with the symptoms.  

I've always had difficult periods.  Things became much worse a few years ago and just progressed.  Initially my GP said I would just have to deal with it as I was entering pre-menopause and it was all hormonal.  I think as women we get used to dealing with all of this as just "part of being a woman".  We tend to overlook when things get really out of balance.  

Over the years, my symptoms have caused public embarrassments as well as much private pain and tears.  I've had three hospital stays for un-diagnosed abdominal pain.  I should have known and I wish I had pushed the issue with my doctors sooner.  Family history plays a factor and my mother had a hysterectomy for severe endometriosis before she was 30.  I was just diagnosed this year, but have likely been suffering for most of my life.

Everything came to the forefront for me December 2014.  After a six-week long and difficult period I ended up in the emergency room.  I was admitted and needed a blood transfusion.  This is obviously not just "part of being a woman."  Luckily, that day the nearest A&E was St. Mary's Hospital. They have one of the leading Gynecology Departments in the NHS.  

Over the next year, I had various diagnostic procedures and treatments.  The initial diagnosis was fibroids.  After an outpatient hysteroscopy, it was determined that most of the less-invasive treatments for fibroids were not an option for me and a hysterectomy was recommended.  They also discovered a large endometrioma or cyst on my right ovary.  Along with my family history, this was indication that I might also be suffering from endometriosis.  As I'm past child-bearing age, a hysterectomy seemed to be the best option for me.

I was referred to a surgical team that specializes in laparoscopic surgery and endometriosis.  After a failed attempt at an MRI (who knew I was that claustrophobic?), they decided to go ahead with the surgery.  But first, in an attempt to improve the odds of a successful laparscopic procedure, I had to endure three months of GnRH-A injections.  The goal was to shrink the fibroids and endometrial tissue.  What followed were three of the most difficult months I've ever experienced. 

The injections affect your pituitary gland and stop the natural production of hormones so that you are put into a state of total menopause.  I was told to expect some pretty horrendous side effects and given a long list, but nothing could have prepared me.  The side effects included the usual hot flushes, night sweats and headaches.  But also more extreme side effects including horrendous bone and joint pain. There were days that I could barely walk.  I knew it was only for three months, but it gave me a deep empathy for people who have to deal with this type of pain on long-term basis.  

Finally, the day came for my hysterectomy.  As I walked into the operating suite and got up on that table I was so frightened.  Worried about everything that would and could happen.  But that was all "before".  And this is now "after".  If you could see my face right now, I'm grinning from ear to ear and I have tears in my eyes.  

Oh, the first 24 hours were pretty horrible as I dealt with the ugly effects of the anesthesia and getting my pain under control.  The next 24 hours were less horrible, as I weaned off of the narcotic pain meds and had the drain removed.  By day three, I was feeling pretty good all things considered.   There were some problems with the NHS recovery care that I received.  That's a whole other story. 

But, I had two of the best surgeons you could ask for. The endometriosis was more extensive than they expected.  My large intestine and some other structures were involved.  Everything had to be carefully dissected and the surgery took a bit longer than planned.  They removed my uterus, cervix, ovaries and tubes without any damage to bowel of bladder which is always a risk.  

They also removed the endometrial tissue within my abdomen.  I started HRT (hormone-replacement therapy) just a few days later.  Because there is still a risk of that tissue being present, I'm taking combination HRT with both estrogen and progestogen.  This should prevent it from reacting to the hormones so I no longer have chronic pain.  

It's amazing how much better I feel already.  I feel more like a woman than I have in years. I was feeling like I had aged so much in the last year.  But, now I feel brighter and happier.  I think I even look younger.  I'm still quickly fatigued from the surgery and have some pain from the incisions.  I have to remind myself that I'm only a week out from major surgery.  But, I feel so much better than the day I went in for surgery.  Yay Hormones!

Now I have some time to recover.  Both my body and just... me.  I'm ready to get my life back.  Matthew has been amazing through all of this and has taken such great care of me.  Thanks so much to everyone that has left messages of love an support.   I'm excited about what life "after hysterectomy" has to offer.  

I'm also excited to get caught up on my blogging.  This medical journey has taken so much time and energy.  It will be nice to focus on other things again.  

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