May I talk about endometriosis?

I know most of my posts are about pretty neutral topics with wide-ranging audience appeal, primarily gardening and cooking.  But to be completely honest, the reason I started this blog back in March is because I thought I might be having major surgery, and this would be my outlet to share my experience and a way to get in contact with others who share my medical maladies.  I guess I was hoping for some sort of a support group…or at least a cathartic channel for pre-surgery nerves and post-surgery challenges and accomplishments.  If nothing else, then I would at least offer an honest account of my experience for anyone who was looking for more information—just as I was hoping to find at the beginning of this adventure, but didn’t.  So if I may, please allow me this favor to discuss an important and very personal topic.

ALERT!  ALERT!

This is your fair warning: this post is going to get personal and it is going to get raw.  So in case you are squeamish about (or have no desire to read about) topics that include words like uterus, menstrual cycle, ovarian cyst, cramps… or bodily functions like diarrhea, gas, and vaginal discharge…then get out now!  Hit the back button and pretend you never saw this post.

Ok, now that I’ve done my due diligence, where to begin?

For the past several years, I’ve noticed an increase in the intensity of my menstrual cramps, and last year it came to a head when, after a morning run with Hubby and The Stinker, I almost didn’t make it home because of a sudden onset of cramps like nothing I have ever experienced before.  I basically had to crawl the last 2 blocks home.  I made it to the bedroom where I collapsed on the bed and did not move for 2 hours.  So much for going to work that day.  Advil did nothing to relieve the pain.  It was mid-afternoon before I was able to take a shower and sit up in bed without thinking I was going to pass out.  Have you ever experienced pain so severe that you get goose bumps, break out in a cold sweat, and see stars?  This was that kind of pain.  My boss said my symptoms sounded like endometriosis.  From what I read online, I did have several symptoms, but did not have all of them.  But I filed it away in the back of my mind for when I would next meet with my gynecologist. (I now think that I may have had an ovarian cyst rupture during that run, but I’ll never know for sure.)

The real train wreck started when I visited my gynecologist for my annual pap smear a couple of months after the running-induced cramps experience.  The nurse asked the usual questions: are your periods light or heavy (heavy), do you have a lot of clotting (clumps of tissue) during your menstrual flow (yes), do you have severe cramps during your period (hell yes), do you have spotting between periods (yes, when I run)?  This last answer perked up the ears of my gynecologist who said, “You shouldn’t be having any spotting at all between periods.  You might have a polyp in your uterus.  We’ll send you over for an ultrasound.  If you have a polyp, you’ll need surgery.”  At the word ‘surgery’ panic ensured inside my brain.  I have been relatively healthy for most of my life and I have never had to have any sort of medical procedure done outside of a few stitches I got while playing basketball in high school.  Hospitals, needles, surgery, anesthesia…all of those things make me queasy, and (naively) I have always thought, “I’ve made it this far in life, maybe I won’t ever have to have surgery or stay in a hospital.”  Well, the results of the ultrasound were my reality check.  Yes, I did have a polyp in my uterus, and (Bonus!) I also had a cyst on my right ovary.  Since ovarian cysts in and of themselves are nothing to be concerned about (one forms on one ovary every month in preparation for ovulation, then it ruptures to release the egg to the fallopian tube), the technician said it was nothing to be concerned about necessarily.  But still.  I knew I was going to have to have surgery for the polyp at least.

Fast forward a few weeks:  I meet with a gynecological surgeon.  We schedule a date for the surgery, and schedule another ultrasound for immediately prior to surgery just to check for the cyst.  If the cyst is still there, then he will remove it.  The ultrasound prior to surgery still showed the rather large (4.5cm) cyst, so now I actually had to prepare myself for not one, but two surgical procedures.  In order to remove the uterine polyp, the surgery is actually very simple: the cervix is dilated ever so slightly, and the surgeon takes a tool to scrape the polyp out.  Sometimes patients are only put under local anesthesia for this procedure; I was put under general anesthesia because of the second procedure, a laparoscopic procedure to remove the cyst on my right ovary.  There were 3 small incisions, one at my belly button, one about 3 inches below that, and another 3 inches below that at my bikini line, just above the pubic bone.  The crazy thing about a laparoscopic procedure is they insert a camera into one of the incisions and the other 2 are for surgical tools.  In order to be able to move around and see everything well, they pump carbon dioxide into your abdomen to inflate it like a balloon.  Even though they are able to force some of the carbon dioxide out after the procedure, usually a lot of it is left in there.  This causes the belly to look bloated and distended, and it takes a few days for the carbon dioxide to work itself out of the body.  The medical videos I watched prior to the surgery suggested I “may have a little discomfort in my back around my left shoulder, but that the pain should be short-lived.”  Well, at least in my case, the pain was excruciating…in my back, in my chest, basically all over my abdomen.  It was like eating 10,000 onion rings and 100 bowls of chili and having so much bloating and pressure that I was pretty sure I was going to float away (if only they had used helium instead of carbon dioxide….) or at least bounce off the walls if I hit one just right.  Someone suggested to me, “Can you take some Gas-X or some sort of anti-gas medication?”  “Well, no, actually that would do me no good because the gas is inside my abdomen, not inside my digestive tract.”  I had to wait for the gas to diffuse into my digestive tract so it could then be eliminated from my body.  And what a process that was.  In fact, it was one of the most vile, reprehensible acts my body has ever performed.  Ever.  There was burping.  And lots of it.  That felt good to release some pressure.  Then came the flatulence.  Oh my lord, the farts.  The smell alone would have killed a cow.  And the volume!  I mean quantity, not loudness here, though I will admit I was glad it was winter and the windows were closed because I’m sure my neighbors would have heard many unpleasant things.  But I could not believe just How. Much. Gas.  I could have filled the Hindenburg, I’m sure.

Why am I sharing such disgusting details?  For one, the videos I watched about “what to expect” after the surgery played this down quite a bit.  And they only mentioned the discomfort, not how the discomfort went away.  I wish I had known what to really expect!  I consider this to be a most humble public service announcement for anyone who is about to experience an abdominal laparoscopic surgery—someone might want to know what to really expect after the procedure.  Of course, some of my friends who have had similar procedures did not experience the same pain and vile aftereffects as me.  Everyone will respond differently, but at least now you know.  It could happen to you.

After the surgery, Hubby told me that when the doctor briefed him, he said, “The surgery went well, but I’m afraid this won’t take care of her pain.”   He removed several polyps from my uterus, and the cyst was a chocolate cyst—a classic product of endometriosis.  And of course he found several endometriosis adhesions during the surgery.  Surgery is the only way to truly diagnose endometriosis since it doesn’t show up in blood work, on ultrasounds, CAT scans, or any other medical test.  What a bitch.  And the endometriosis was extensive, with large adhesions attaching my ovaries to my uterus and it was even attached to my rectum.  The doctor was able to remove some of it, but he was worried about puncturing my rectum, so he couldn’t get all of it.  At my 2 week post-surgery check up, we discussed treatment options: birth control pills may help alleviate pain and reduce the severity of the symptoms; I could take hormones to induce menopause which might knock out the endometriosis (but no guarantees), but the hormones come with some nasty (and some irreversible) side effects; or I could have a hysterectomy and remove the uterus and ovaries and maybe be done with the pain once and for all.  I knew all this going in and I decided that I would try the birth control for 9 months until my next annual checkup and pap smear.  And I liked my doctor’s idea of having me take the birth control consecutively for a few months and only having a period every 3 months.  Sounded ideal.  Unfortunately, it wasn’t.  I had a lot of breakthrough bleeding and cramps during the months when I was not supposed to have a period, so I switched to taking the pill like normal, with a period every month.  The cramps were still unbelievable during my periods at times, forcing me to miss social functions and/or work.  I have a prescription for hydrocodone, but that didn’t work sometimes.  But other times my periods were tolerable and I could take Advil to control the cramps.  It was weird, like playing roulette every month—“Ok, what’s it going to be?  Tolerable or unbearable?”

So when I met with my doctor again last Friday for my annual check up, I mentioned that the pain is still excruciating at times and I’ve been noticing a lot more action going on downstairs lately.  I was out for a run just before Thanksgiving and I had a terrible onset of cramps during the middle of my run (of course it would be when I was at the furthest point from my house).  I was doubled over a fence post willing myself not to shit my pants.  Somehow I made it home (poor Stinker was so confused by the whole ordeal) without causing a public scene.  Once the diarrhea was over and things had calmed down (at least in my digestive tract), I noticed that my left ovary and my uterus were cramping pretty badly.  That lasted for about 3 days, with varying degrees of pain and uncomfortableness.  My doctor thinks I might have ruptured a cyst on my ovary, so this would now be the 2nd time (maybe) this has happened while running.  And so we discussed my options again.  This time I elected for surgery.  The big one.  I’m getting all the hardware removed and I’m hopeful that this will take care of my pain once and for all.  I have been contemplating this decision for the past 9 months and it is not one I have taken lightly.  It’s really the last thing I want to do, but I think it’s really my best option for remediating my symptoms and gaining my life back.  Hubby agrees.  And what’s helped me find solace in my decision is I have talked with numerous women over the past several months who have had hysterectomies, and they all say the same thing: YOU WILL NOT REGRET IT.  A few people express concern (“But you’re so young!”), but my boss actually had a hysterectomy at 37, which is about the age I will be when the surgery happens next month.  So I feel good about my decision; it has lessened some of the anxiety I have been experiencing over the past several months, and I hope the outcome is what I expect.  Now I’m just working to get my core in shape at the gym so I will heal and recover quickly.  And honestly, I’m looking forward to 6 weeks off work.

So fair warning, after the surgery the majority of my posts will be about the recovery process, as I will not be allowed to cook, exercise any more strenuously than walking, or ski.  I will be reading gardening books and seed catalogs to plan my garden for next year, so I’ll try to get as much gardening into my posts as I possibly can.  It will help keep my spirits up.  And maybe I’ll have a chance to learn a new skill, like sign language or play the guitar.  But one thing is for sure: things are about to get interesting in my life…

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3 Responses to May I talk about endometriosis?

  1. Yaaay!! Be brave, woman!! And know you’re not alone 🙂

  2. Ausum says:

    Endometriosis is a bitch. A full class awful one and we’ve definitely compared our experiences with it and ruptured ovarian cysts. It is a world of pain. Thanks for sharing your story. I’m curious how it will play out for you as who knows what it down the road for me.

  3. Thanks, ladies! You both have my sympathies in dealing with this terrible disorder. And I appreciate the support! I just found out my surgery date this morning, and already I’m feeling empowered and excited about next year. 2015 is a new beginning for me–one free of pain, I hope!

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