My Endometriosis Story

I’ve alluded to my surgery several times on the blog but didn’t go into major detail – because, eww.  But I constantly finding myself searching online for other people out there who have gone what I’ve been through to know what to expect, or if things I’m experiencing are “normal”.  So, I decided to just go ahead and post about it, because maybe someone out there is looking for something similar.  If you don’t want to know gory medical details, feel free to just skip this post.  It’s long.

For the past couple of years I’d noticed that my monthly cycles had been coming with more and more cramping.  I even mentioned it at one of my regular woman checkups and we both chalked it up to changes in hormones — I am almost 40.  Sigh.  Then somewhere around the middle of last year I began having extreme pain in my upper belly — right under my rib cage.  It usually only lasted a day or so, so I didn’t feel like I needed to go to the doctor.  However, once I thought I was just having normal cycle cramps, but then the upper belly pain got so bad I did go to the doctor, who sent me to the ER.  They both thought I had appendicitis, even though my pain was up high, when they pushed on my appendix I almost came off the table.

Before whisking me off to surgery, they did a CT scan… which came back NORMAL.  No appendicitis, no diverticulitis.  Nothing abnormal at all.  The doctor said it could have been a cyst that had already ruptured, which wouldn’t show on a scan.  After a day or two, it went away.

The next month, on the first day of my cycle, the excruciating pain came again.  We are talking roll up in a ball on the floor pain.  This was the first time I made the connection of the pain to the time of the month.  So, I took some pain pills I had been given the previous month to get me through the next couple of days and did what anyone would do — started searching the internet for answers.  Why would I have a pain in such a weird spot during my cycle?  It’s not like my female organs were under my ribs.  I came across some instances where endometriosis happens in areas other than the uterus or ovaries. Not all that common, but enough to pique my curiosity.  I learned that endometriosis seems to be hereditary, and called my mom… sure enough, that had been one of the causes for her hysterectomy over 30 years ago.

I scheduled an appointment with my ob-gyn and she confessed that it did seem like an odd place for pain, but that endometriosis does occur in odd places sometimes, and that she didn’t work with endometriosis patients as much as some of her associates did, but would look into it for me.  She placed me on birth control pills, because the hormones from the monthly cycles are what cause the endometriosis to flair up and she thought it was our best first line of defense.

Aside:  I didn’t really even know much about endometriosis before this.  Apparently, it’s caused by leaking of the monthly lining back up the fallopian tubes and into the abdominal cavity, which then adheres to the outside of various abdominal organs.

The pills didn’t help.  The next cycle was as bad as ever.  I was in tears because I needed to be traveling for my grandfather’s funeral, but was in so much pain I felt I needed to be in the hospital.  I called the on-call doctor, she prescribed me some heavier pain pills and I pressed on.  The next week, I discussed the episode with my own doctor, and she referred me to a specialist.  When I called to make an appointment, I found that Dr Mangal (the specialist) hand-approves patients and I had to fill out 14 pages of paperwork just to send them to look at and decide if he would see me.  He is also a fertility doctor, so I guess he has to be selective.  Fortunately, his nurse called me within a few days and we scheduled an appointment.

I left the first appointment finally feeling like I wasn’t crazy.  Before my visit with the doctor, I watched a detailed video on endometriosis, what it is, what causes it, etc.  He said all my symptoms pointed to endometriosis, and since I was in so much pain, wanted to schedule surgery as soon as possible.  Laparoscopic surgery is the only way to diagnose endo, and the plan was once he was in and saw it, he would go ahead and burn the spots of endo off.  It was day surgery.  In the meantime, he told me to skip the placebo weeks of the birth control pills so that I wouldn’t have a cycle that would trigger the pain I was having.  I went in March for the laparoscopy, which was day surgery.  It turned out to be a pretty quick surgery, because once he got in and saw what he was dealing with, he just made some documentation and didn’t do anything else.  My insides were, in his words, “a tornado”.  Things were out of place, there was endometriosis everywhere – on my bladder, my ureter, my appendix, my uterus, bowel and ovaries.  My organs were fusing together, and he couldn’t even locate one ovary because it was completely entangled with my intestine. He told my husband directly after surgery that I had definite cause for pain and I was going to need a complete hysterectomy & appendectomy.  I had to take lupron shots for 2 months first though to cut blood flow to the uterus and make it easier to remove.  One of the side effects of lupron is early menopause symptoms.  Those hot flashes were fun, let me tell you!

So, while waiting 2 months, I did several things:

  • I took birth control pills continuously, skipping the placebo week and thus no cycle, so even though I was a little sore from the laparoscopy, I never again had to experience the excruciating endo pain.
  • I met with three additional doctors — two on my surgical team, since so much was going on I had to have a rectal surgeon and a urologist on hand — and a third who is a gastroneurologist.  (More on his treatment in a bit).
  • Had pre-op tests done – MRI, Kidney function test (since I only have one), bloodwork, glucose test, etc.  I got very tired of waiting rooms.
  • Had to go on a special diet (related to the gastroneurologist – more next)
  • Tried to get everything in order because 6 weeks down is a lot of weeks!
  • Got a job.  It’s been an unfortunate necessity that I have to re-join the work force.  Fortunately, God placed just the right job in my lap, working at our church, and they were fine with me waiting until both my recovery and my family vacation was over before beginning full time.  (I start in just a few weeks).

I was sent to the gastroneurologist, Dr. Mathias, to get my “gut” in order.  Because the endometriosis covered my intestines, it had been causing seizures in my bowel and causing all sorts of tummy problems I had just attributed to not having a gall-bladder.  He explained the correlation of endometriosis and diabetes — that many times endometriosis is a precursor to the onset of type II Diabetes.  From results based on a seismic reading of tummy sounds, he thought it probable that I was already diabetic and ordered a 5 hour glucose tolerance test.  He put me on several medications, minerals and oils and a very restrictive diet – basically chicken, eggs, seafood (which I don’t care for), some cheeses, veggies and some (but not all) fruit.  Some “cheats” were allowed in the form of the occasional grass fed beef, white wine only (no more red, sniff.) and butter.  Coffee was a “no” on the list, but the nurse told me as long as I limited myself to one cup a day it was okay… it’s the second and third cups that are the worst for you because after the first cup your body throws out all the good antioxidants and just keeps the caffeine.  The results of my glucose test showed that I was not diabetic, only “insulin resistant” which means my body doesn’t react the way it should to insulin (which is something I’ve known since I was diagnosed with reactive hypoglycemia as a freshman in high school).  So, no news there, but it means now I get to check my blood sugar and take one more medication while I get everything under control (I started this new routine two weeks post-hysterectomy).

So, my hysterectomy/appendectomy was at the beginning of May.  They also removed all the visible endometriosis cells inside my abdomen and sliced some sections off my intestine and had to stitch it up in places.  The surgery took about 5 hours.  I got my own morpheme pump to help manage my pain, and the staff took great care of me.  My family spent a lot of time at the hospital and my eldest daughter was a big help.  I had surgery on a Tuesday and was able to go home on Saturday.  Once I was home, my mom stayed with me for several days, and although I know we could have survived without here if we had to, it sure was nice having her here.  I was in a lot of pain, especially if I moved… getting in/out of bed hurt a lot.  It was about a week before I even felt well enough to read, and then another week after that before I weaned myself off the Tylenol 3 they had prescribed me.  After about a month, I began to drive short distances, although I still preferred to be a passenger or have someone else do the driving if they could.  After 5 weeks, I was still pretty sore at the end of the day and got tired easily.  I decided to get some support undergarments and an abdominal brace (found at the local CVS) that I began using to support my belly, and that has seemed to help with the soreness.  I wish I had thought to do that sooner!

So here I am 6 weeks out.  I’ve had my 6 week checkup.  I still have some restrictions, but am back to most activities.  I got to take a nice long “girly” bath filled with a LUSH bath bomb last night and it was divine.  I am still pretty swollen.  A lady at the hospital asked me how much longer I had before my baby came… and I politely replied that I was not pregnant (although my girls keep pointing out that I look it).  Actually, the swelling has gone down.  When I came home from the hospital I looked about 7 months pregnant… now I’m down to 3 or 4… so another reason I’m happy using the supportive undergarments.  Not that you could tell by looking at my “swelly belly”, but since the beginning of the year I’ve lost 30 lbs.  I lost 10 before all this mess started and 20 more since going on the restrictive diet.  Obviously, since I’ve been recovering I haven’t been exercising much, but I plan on adding some walking to my routine soon… I just still tire so easily.

So, that’s where I’m at now.  I would not say I’m at 100%… maybe 75-80%, but I feel so much better than I did when I got home from the hospital.  I’ve had no back pain — all the pain has been directly related to my surgery and the healing both inside and out.  My gut is starting to feel normal again after all it’s been through, and I’m still plugging away on my diet.  Thank you to all of you who said prayers on my behalf, sent kind notes in the mail, and brought my family dinners!  I am so blessed with such wonderful friends!  Thank you all!

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About Laura

A Christian wife, mother, daughter, former educator, photographer, amateur chef, pretend gardener, alto 🎶, book nerd, cancer-survivor and laundry-hater.

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6 Responses to My Endometriosis Story

  1. Lisa Ives June 20, 2015 at 7:19 am #

    WOW and a HUGE BLESS YOUR HEART! So glad it sounds like you are over the worst and seeing the light at the end of a long painful tunnel! I, too, had endo and an early hysto – mine at 38. Endo itself is painful, but gracious, at the extent yours grew! So glad you are beginning to feel better and thankful you found such a great doctor. Prayers for your continued recovery and the day when you feel GREAT again!

  2. Jami DiPrete June 20, 2015 at 7:55 am #

    Laura, this too is my story. I did all this 22 yrs ago at the age of 26. I had to deal with both the pain (5 surgeries) and infertility of this horrible disease! It has been a long journey with endometriosis, but after the hysterectomy I felt like a new person. Now, some 20 years down the road I feel as if I am dealing with some consequences of the surgery. I am pretty sure I have tons of adhesions that have formed post surgery, and I still have issues both with my bladder and intestines from the extensive scarring. I am however, mostly pain free. For anyone that has endured the extensive Stage 4 endometriosis diagnosis and surgery, you cannot believe the pain. I am so happy you are feeling better and are on the road to recovery. My prayers are with you.

  3. Julie Parker June 24, 2015 at 11:14 am #

    Thanks for being transparent about what you went through. I’ve benefited in the past from having a medical problem and finding others who went through something similar. I hope you’re feeling 100% soon. Saying prayers for you!

  4. Ariel December 15, 2016 at 3:22 pm #

    Thank you! My endo has spread to my legs and arms. It is giving me tons of nerve damage. I need help. Dr. Mangal will not order me a CT scan or MRI, so I am off to see a neurologist. I am scared they will just think I have something else.

  5. Pilar September 7, 2017 at 8:44 pm #

    So, after 2 years, are you still on dr Mathias’ diet? Do you still take klonipin and periactin?

    • Laura September 11, 2017 at 5:38 am #

      I am no longer on any meds. I would probably do best to stay on the diet, but I have have yo-yoed off and on it for the past couple of years. It’s hard for me to keep the diet so restrictive.

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