Hysterectomy: A Chance at Freedom from Endometriosis

The month of March is Endometriosis Awareness Month.

I am one of the millions of women in the world who has endometriosis.  A year and a half ago, I had a hysterectomy.  I wasn’t given much of a choice in the matter due to the fact that I had stage 4 endometriosis as well as adenomyosis of the uterus.  Aside from one ovary, all of my reproductive organs were removed via an open abdominal incision.  The endometrial tissue that was growing on the inside of my pelvis, intestines, bladder and bowel was scraped and burned off with the hopes of it never returning.

Following the hysterectomy, I was finally able to experience freedom from the pain of endometriosis that had plagued me for years.
Hysterectomy: A Chance at Freedom from Endometriosis
*This post contains affiliate and/or paid links which means that if you click on one of these links and buy a product, I may earn a small commission at no additional cost to you. Rest assured that I only recommend products that I love from companies that I trust. Furthermore, I am not a medical professional and nothing in this post should be taken as medical advice. I am simply a mother who has been there and lived to tell the tale.

The recovery period following my hysterectomy was one of the toughest struggles I have ever experienced. The surgery was invasive and there were complications.  Worst of all, neither my doctor nor I predicted that the outcome would be nearly as bad as it was.  We were blindsided with a “worst case scenario.”  Being unprepared for a hysterectomy made the recovery difficult, both physically and emotionally.

In The Hospital

48 Hours

I gripped my morphine drip with an iron fist.  I don’t remember much in those first 48 hours, aside from getting the bad news.  Since I did not go into the hospital on that Friday morning expecting to come out of it with a hysterectomy and a 5 day hospital stay, I was not in the least bit prepared.  I hadn’t packed a change of clothes, a toothbrush or a phone charger.  Even though my husband did his best to bring me what I needed, the loss of control made me feel anxious and on edge the entire time.

Day 3

I had lost a lot of blood during the surgery, but I wasn’t given a transfusion until three days later.  Perhaps it was because they wanted to see if I would recover without one, which I didn’t.  I was weak, dizzy and my breathing was even faint due to a lack of oxygen in my blood.  At night, I would wake up gasping for air.  After the blood transfusion I began to feel a lot better.

They finally removed the catheter but peeing was next to impossible.  A tiny trickle came out at best.  Getting out of bed to go the bathroom and back again took every ounce of strength I had.  By that evening, I was in so much pain that I couldn’t make it to the bathroom or pee at all and the nurses had to use a straight catheter to empty my bladder.  Two straight catheters later, they decided to put the Foley catheter back in for the night.

Day 4

I was supposed to go home. I was somewhat mobile, able to pee on my own, made a bowel movement, had been off of morphine for 24 hours and even managed to take a shower.  They replaced the morphine with T3’s for pain management instead.  But later that afternoon, I began to feel dizzy, weak, nauseated and had shortness of breath in addition to a drop in blood pressure.  Turns out I had a reaction to the codeine in the T3’s.  I stayed an extra night to be on the safe side.

Day 5

I finally got discharged from the hospital five days after my sudden hysterectomy. It was a two hour drive home and my husband and sister had padded the seat in our vehicle with pillows and blankets so that I would be as comfortable as possible.  The nurses gave me a dose of painkillers right before wheeling me out and buckling me in.  I vaguely remember the drive but it felt good to be home.

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The First Two Weeks

Movement

At the hospital I was given Heparin shots regularly, but now I was supposed to get up out of bed and walk around as much as possible to avoid getting a blood clot.  Since we live in a split-level house I was mostly contained to the upper level, so I did laps around my bed and in the hallway.

Pillows

The only way I was truly comfortable was with a pillow under my head, one under each of my arms, and one across my stomach which I had to apply pressure to anytime I tried to use my abdominal muscles (which is so much more than you realize).

Constipation

They give you a few stool softeners in the hospital but you’ll need them for far longer.  Since my bowel, bladder and intestines had all been “scraped” of endometrial tissue and adhesions, they too, were swollen and trying to heal.  Going to bathroom was something I dreaded having to do.

Stairs

Going up and down stairs was a task that I didn’t even tackle until the second week.  You really don’t realize how painful it can be on your incision to take a step up or down.  It pulls on the stitches and stretches everything from the inside.  One step at a time, with slow movements and regular breaks was the only way to manage them.

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Six Weeks Later

My grandmother had come to stay with us during my recovery period and she was an absolute blessing.  She took care of the kids, cooked, cleaned and delivered my favorite foods and tea to my bedside on a regular basis.  She, too, had a hysterectomy in her 30’s and so she knew the pain I was in and refused to let me lift a single finger. 

So when the six week mark hit, I expected all this hysterectomy business to be behind me.  But I was still in pain.  It hurt to bend over, and even just to stand for any length of time.  It still hurt to go to the bathroom and I was exhausted all day long even though I wasn’t doing anything.  I was apparently well enough to drive but moving my foot from the gas pedal to the brake caused pain by my incision. 

By this time, my grandmother returned home and it was just me and the kids, resuming our normal, everyday activities. My husband hated to see me in pain and was anxious for me to recover.  He asked me every single day if I was doing better.  I wasn’t.  I was struggling so hard to get back into things.  But I told him “yes” so that he wouldn’t worry.  It took at least eight weeks before the pain finally ceased.  It still hurt to lift or bend, but for the majority of the day, I didn’t think about it.  

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The Next Year

The Absence of Blood

If there is one major benefit to a hysterectomy for a woman in her 30’s, it’s the end of periods for good.  Prior to my hysterectomy, I bled for 6 weeks straight.  I started to get a rash from having to wear pads and tampons continuously for so long.  But in the last year since, I haven’t had to think about a single drop of blood.

Believe it or not, it was something that I needed to get used to.  For 20 years, I’ve had to worry about waking up to blood stained sheets or dealing with bloody messes all over the bathroom.  I still find myself checking the toilet paper after I wipe for traces of blood, but there’s never any there.

Ovulation

Yes, my lonely solo ovary still ovulated.  At least, I believe that it did, but I no longer had a cervix or menstrual cycle to help me determine for sure.  Further research confirmed that symptoms of ovulation post hysterectomy were:

  • pelvic pain (on the side of the remaining ovary)
  • tender breasts
  • PMS symptoms (mood swings, food cravings, headache, bloating)

Since that one ovary was still ovulating and producing estrogen, these symptoms did not stop post hysterectomy.  But a sole ovary will only be able to hold down the fort for so long, so I have had to accept the fact that menopause will come to me sooner rather than later.  

Birth Control

Many women express a decrease in their sex life following a hysterectomy. But not having to worry about getting pregnant actually made it all the more enticing for me.  Even though I was still ovulating, I didn’t need to track my cycle or worry about what form of birth control to use.  Although it took some time to accept the fact that I would never have another baby, part of me was relieved to never have to worry about any of the baby-making parts again.

Freedom

A hysterectomy did provide me with a sense of freedom from endometriosis. For the first time, in a very long time, I enjoyed a summer with my family and was able to do all the things that I never could before.  I could go camping or to the beach and not have to worry about changing a tampon in the middle of the woods.  I had energy and was no longer in an obscene amount of pain so I could keep up with my kids for a change.  I danced and swam and ran around and hiked and rode a bike.  I was able to live my life, without pads or pills or a heat pack.  

Among all my newfound freedom, however, there was a looming sense of emptiness. The lack of periods was a constant reminder of my traumatic experience.  I hadn’t quite come to terms with the loss of my uterus yet.  The more I thought about it, the more I felt empty, infertile and dried up.  I would hear or see other women complain about having cramps and asking for a tampon and while I was glad those days were behind me, I also felt like less of a woman.

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18 Month Update

A little over a month ago, I suddenly experienced a sharp pelvic pain.  I followed up with a doctor who said it was likely caused by a small hernia along my incision and ordered me to rest for a few weeks.  He also warned me that it could be caused by scar tissue and/or adhesions.  If the pain persisted I was to come back for further tests.

Obviously, as a mother of three, trying to get enough rest was near impossible.  I did my best to not bend, lift or strain myself but the pain was persistent.  Within two weeks, it had spread across my entire pelvis and lower back… and it was all too familiar.

So now, 18 months post hysterectomy, I wait for more doctor’s appointments to find out if the endometriosis has returned.

Overall, my quality of life has improved since having the hysterectomy. At the time, it was traumatic and difficult to deal with.  But even with the possibility of the endometriosis returning, I have no regrets.  The hysterectomy gave me a chance at freedom, even if it was short lived.

Hysterectomy: A Chance at Freedom from Endometriosis Hysterectomy: A Chance at Freedom from Endometriosis

Battling Endometriosis while Suffering From Postpartum Depression

Endometriosis is a condition that plagues nearly 10% of women but is often misdiagnosed or not diagnosed at all.

Like postpartum depression, endometriosis is something that isn’t talked about enough.  It causes a considerable amount of pain but so many women learn to live with it and don’t seek the proper treatment.  And those who do seek help, are often told it’s nothing, because endometriosis doesn’t show up on ultrasounds or x-rays or ct scans.

While there is no link between endometriosis and postpartum depression, they do have a lot in common:
  • They are affected by hormones
  • They affect women in their childbearing years
  • They are under-diagnosed conditions
  • They are invisible diseases
  • They are stigmatized and need more awareness
Every women’s struggle with endometriosis is different, just like postpartum depression.  Here is MY story…
Battling Endometriosis While Suffering From Postpartum Depression
*This post contains affiliate and/or paid links which means that if you click on one of these links and buy a product, I may earn a small commission at no additional cost to you. Rest assured that I only recommend products that I love from companies that I trust. **Furthermore, I am not a medical professional and nothing in this post should be taken as medical advice. I am simply a mother who has been there and lived to tell the tale.

Battling Endometriosis While Suffering from Postpartum Depression Battling Endometriosis While Suffering from Postpartum Depression Battling Endometriosis While Suffering from Postpartum Depression

Battling Endometriosis While Suffering from Postpartum Depression


It was a mere coincidence that both my endometriosis and postpartum depression were diagnosed at the same time, because the two conditions are not exactly linked to each other.  But ever since that diagnosis, they have been intertwined throughout my journey of highs and lows.

It all began when my daughter was 5 months old.  Actually, the postpartum depression symptoms had been going on for a few months already but I was still in denial. 

We took a family trip to Disney World (both kids were still free to get in, so we thought we’d take advantage)!  Despite exclusively breastfeeding, I got my first postpartum period – right there in the Magic Kingdom.  

I was disappointed and annoyed but what else could I do, on this trip of a lifetime, but suck it up and waddle around in blood-soaked pants for the rest of the day?

The next day, we planned to go to Cocoa Beach.  When you’re from the Canadian Prairies, trips to the ocean are few and far between, so I was definitely NOT missing out on it.  I bought the biggest box of tampons I could find and tried my best to enjoy the day.

But the cramping was worse than labor pains and the bleeding was relentless.

I made it through that vacation but the following month was even worse.  I probably wouldn’t have said anything to my doctor, except that it happened to fall on the same day as my daughter’s 6 month checkup.

I was lucky enough to have a great doctor with whom I already had a close relationship, and it was in that appointment that I broke down crying – overcome by the pain of the menstrual cramps and the dark place my mind had been in for the last 6 months.

Based solely on my symptoms, he figured it was endometriosis that was causing the pain and heavy bleeding.  It was the first time I had ever heard the word.  When he told me that it can cause infertility, I actually felt relieved because I had zero desire to have another baby.  He gave me some samples of birth control pills and advised me to take them continuously in an effort to “skip” my periods.

Then we discussed the postpartum depression and came up with a treatment plan.

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I was supposed to follow up with him in a few months to see how things were going.  But by then, we had relocated for my husband’s job – a 9 hour drive away.

For a while, things were alright…

My mind was distracted by the move and I remembered to take my birth control pills everyday, avoiding the painful cramping that accompanied my periods.

Until I ran out of samples.

Trying to find a good doctor in a new town where I didn’t know anyone was tougher than I thought.  So I chose to suffer instead.  I loaded up on painkillers and wore adult diapers to soak up the extreme amounts of blood and just dealt with it.

With each month that passed, the pain got worse and worse.  The cramping started earlier and lasted longer until I was only pain-free for one week each month.  I turned to essential oils for help with the pain, but even their magic wasn’t strong enough.

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The chronic pelvic pain exacerbated my postpartum depression symptoms.

I felt defeated by the pain.  I didn’t feel like being strong or fighting through the pain – I hoped and prayed it would just kill me.  I thought about how my daughter might someday experience this kind of pain, and I felt responsible for that.  I felt like all I did was inflict pain on those around me, because I was also in pain.  And I was certain that everyone would be happier, myself included, if I was just gone.

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When my year of maternity leave was over, things got better.

I found a job that I loved and began to make friends.  The daycare we chose for the kids was wonderful and they settled into it without any problems.  I appreciated my children more because I cherished the short amount of time we had together each day instead of dreading the long hours of nothingness.

Finally, I was happy!  I pushed through the endometriosis pain every month because I didn’t want anything to destroy my happiness.

But after a year of being happy and ignoring the pain – the pain pushed back.

I couldn’t ignore it anymore and eventually wound up in the emergency room.  Much to everyone’s surprise – I was pregnant!  I guess endometriosis doesn’t always cause infertility…

The anxiety began almost immediately.  I didn’t want to go through another HG pregnancy and I definitely worried about dealing with the postpartum depression all over again.  Plus we had just moved again, and hadn’t even bought a house yet.

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Despite the exciting news, the pain was still there… worse even.

The doctors suspected a possible ectopic pregnancy and rushed me into emergency surgery.

When I woke up, I had mixed feelings about losing the baby.  Part of me was relieved to avoid another tough pregnancy, but another part of me felt disappointed that I didn’t get another chance to make things right.

The next day, I found out I was still pregnant.  The pregnancy was a healthy one, and there was nothing they could tell me about the endometriosis because they didn’t want to do anything to disturb the pregnancy.

And so I had my third child.  I suffered from the worst case of hyperemesis gravidarum of all three pregnancies, but for a while, I didn’t have to worry about the menstrual pain.  This time I did everything in my power to prepare myself for postpartum depression again but thankfully was spared from it.  I was given a second chance!  I immediately felt a bond with this baby and she made our family complete.

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I had a good, solid 8 months of bliss with my happy baby before my first postpartum period arrived.

And, in true dream-crushing fashion, it came back on Christmas Eve so I spent most of that night hopped up on painkillers and hovering around the bathroom door in order to change my tampon every 30 minutes.

After another steady 8 months of pill popping, I missed another period.  Oh no, not another pregnancy.  It can’t be.  I can’t do it again.  But the tests were all negative…

My menstrual cycle finally had a nervous breakdown.

It would skip months for no reason and then come every other week.  The pelvic pain got worse and it was no longer limited to my menstrual cycle – it was there 24/7.  I ended up in the emergency room regularly looking for something to help with the pain.  Nothing ever showed up on any of the tests, and I’m certain everyone thought I was a hypochondriac.  Even though I was in an intense amount of pain, I started to wonder if they were right.

The pain triggered the postpartum depression again.

It didn’t help that I was now a stay-at-home-mom, living in a city with no friends or relatives to help me out.  Between the darkness of postpartum depression and the pain of endometriosis, life was very bleak for nearly a full year.

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I finally met with a specialist.

He instantly validated everything I was feeling and scheduled me for a diagnostic laparoscopy to find out what was going on inside of me.  Since he wasn’t sure what he would find, he asked me to sign a form that stated he could perform a hysterectomy if he deemed it medically necessary.  This way, I wouldn’t have to undergo two separate surgeries if I did need one.

We discussed the fact that a hysterectomy would be the worst-case scenario, and I signed the form without hesitation.

In the 6 weeks leading up to my surgery date, I bled continuously.  I should have known then, that more was wrong under the surface than I wanted to admit.  If I had, perhaps I would have been more prepared for what was ahead.

The surgery was supposed to be a laparoscopic day surgery on a Friday.  My husband, kids and I made the 2 hour drive into the city, expecting to stay with family for the weekend and be back home by Monday.

But when I woke up from the surgery, I was told I would not be going home that day.

My doctor came in to see me, head hung, disappointment in his eyes.  He rested his hand on mine and told me that this was the first time he’s ever had to convert from a laparoscopic surgery to an abdominal incision (minimally invasive surgery was his specialty).

And then he filled me in on what happened in surgery.

He had to remove my uterus, cervix, fallopian tubes, and left ovary.  He left the right ovary so that I would not go into menopause but everything else was stuck together with adhesions and needed to go.  My reproductive organs were attached to the pelvic wall, bladder and bowels which he successfully separated, but there would be scar tissue remaining.  The adhesions had re-routed my blood vessels and so he cut into one while attempting to perform the hysterectomy, causing me to lose nearly 4 units of blood and require a transfusion.

Hysterectomy: A Chance at Freedom from Endometriosis
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It was the “worst case scenario,” and I felt completely blindsided by what had just happened.  

I ended up staying in the hospital for 5 days.  Losing so much blood left me feeling weak and dizzy and moving around was almost impossible.  Once I did get home to my own bed, I couldn’t leave.  Walking up and down stairs was difficult and living in a 4 level split meant I was practically bedridden.  Long after the scar healed, the pain inside my pelvis was excruciating.  I was told to expect to be out of commission for a full 6 weeks but it took more like 8.

Dealing with the sudden loss of my uterus was difficult.  Although I knew I didn’t want to have more children, I liked knowing that it was an option.  I spent a lot of time thinking about my pregnancies and how the place where I grew my children and felt them move and kick was no longer there.

But once I recovered from the surgery, the constant pelvic pain that plagued me for years was finally gone.  It was hard to believe that it was no longer there, I kept poking at it to see if it hurt but no – no more pain!  And I never had to wear another giant tampon or adult diaper ever again.

Most days I forget that I no longer have a uterus.  I still get some symptoms of PMS when my lonely ovary ovulates but it’s nearly impossible to track it without a menstrual cycle.  The fluctuating hormones do still affect my postpartum depression symptoms and I have to take extra care of myself on those days, but otherwise, it’s no longer triggered by constant pain.

I’ve been told that a hysterectomy is not a cure for endometriosis and there is still a chance that the endometrial tissue could grow back.
Postpartum Depression Resources in Canada 1
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So while my battle with endometriosis, as well as my battle with postpartum depression, is over for now – they have changed who I am as a person.

They have both taken things away from me that I can never get back.  They have killed a part of me inside and remain there, dormant, waiting for another opportunity to strike. I will do my best to take care of myself,  to help others who are suffering, and to raise awareness about these two important issues, so that if and when they ever do decide to rear their ugly heads again – I will be ready to fight back.


Endometriosis Resources

Endometriosis.org
WebMD Endometriosis Health Center
Nancy’s Nook Endometriosis Education Facebook Group
Endometriosis Support Group on Facebook
Hystersisters.com