My Story

Me and the world's most supportive and understanding hubby, Brian.
(this was taken in 1998 -- I'm much cuter now ;-)

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So far my endo story has been a good one with good news.  That's why I want to share it with you.  Although endo has caused many difficulties and heartbreaks for many women, it doesn't effect everyone the same.  I'm here to tell you that it doesn't have to be the endo the world.
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1985 - This is when my pain first started.  I was the tender age of 12.  Each month, a couple of days before menstruation would begin, I'd feel crampy and achey... not to mention extremely irritable, but that's a different story. ;-)  The first day or two of my periods would be horrid.  The cramps were awful.  However, my mom had similar problems, as had her mother before her, so we thought everything was status quo, regardless of how nasty it was.  (Side note: in the last couple of year's, my mom has experienced far worse symptoms.  She's been diagnosed with adenomyosis, which is similar to endo, except that the endo worms its way into the uteral muscle wall.)  Also, my periods weren't very regular.  I could be off by a week or so.  I also had a lot of clotting.

1996- Fast forward several years.  By now I'd just accepted that pain happens.  I have a Type A personality, so I'm the kind that went to school and work anyway and tried to smile and speak with a calm, cheerful voice while I had my legs tucked up under my desk as tight as I could get them to help ease the cramping while I counted the minutes until I got home so I could pass out.  Anyway, I became engaged and my future hubby and I decided that I should start using birth control pills.  I went to my mom's gynecologist (the same one who delivered me!) who said I was the picture of my mom.  Awww, but I really look like my dad.  He put me on Orthocept and said it would reduce the cramping, clotting and give me regular periods.  Yay!!!

1998 - For a little over a year and half, life was grand... if you don't count immigration to Canada (the red in their flag stands for red tape ;-), ulcers, gallstones and gallbladder surgery.  (When Brian I discuss the "in sickness and health" part of our vows, I tell him he's "health" and I'm "sickness." )  Then, sometime in July or August, I noticed that my periods were getting painful again.  Also, they weren't the same consistency each month as they had been.  Sometimes light, sometimes heavy.  And the clots started to come back, too.  I told my doctor who dismissed it as "mittelschmerz", the pain a woman sometimes feels when she ovulates.  When you're on birth control pills, you don't ovulate, so I didn't like this explanation, but said nothing.  In September I experienced pain four days before my period was due that literally knocked me off my feet.  I remember being curled up on the sofa feeling like someone was trying to rip my uterus right out of me.  As I cried and cried, sweet Brian kept stroking my legs and "being there" for me.  He insisted I go back to the doctor.  So back I went.  This time he thought I might have fibroids, so he sent me to have an ultrasound done.  The ultrasound showed nothing.  Back to the doctor.  By this time I was experiencing the pain throughout the month, although it was more severe 4 days before my period and 2 days after.  It was centered in my right groin and sometimes the area would feel swollen and very sensitive to the touch.  My doctor decided he had no idea what was wrong.  I hoped he'd refer me to a gynecologist, but instead he referred me to a general surgeon to see if he could figure it out.  This doctor examined me and pushed his finger down where I said the pain was.  I nearly punched him in the face, it hurt so bad!  He sent me for another ultrasound, this time to look lower in the groin and to look for a cyst.  He also theorized that it could be a hernia. The ultrasound showed nothing although the technician used his strongest paddles.  It hurt like the dickens, though, so he knew something must be there.  In the meantime, I experienced heartburn relating to another problem I had come to this doctor for. Since I had had ulcers before, he became very concerned and did a gastroscopy (tube down the throat into the stomach).  He did find that I had some gastro-intestinal problems, but I wanted to know what my groin pain was -- I could live with heartburn, this groin thing, not so much.  After 3 months, I reminded him about it and he decided that since my ultrasound hadn't shown anything, it might be endometriosis.  I have to admit, I was not happy hearing that word.  My best friend had had endo since we were in high school and I knew what kind of problems she had experienced.  I thought everyone experienced endo in the same way and thought I was doomed if that's what the problem was.  The good thing, however, was I finally got that referral to a gynecologist!

Feb. 11, 1999 - I finally see an honest-to-goodness gynecologist.  My neighbor had seen him once and she thought he was very good, but not the kind who says much.  No kidding.  My appointment lasted maybe less then 10 minutes.  He examined me and asked some very pointed questions.  He asked about menstrual pain, pain during sex, etc. and I could tell where he was going with it.  He told me to get dressed and to come to his office as he wanted to schedule me for laparascopic surgery to look for endo.  I was petrified.  Partiallly because that word had been mentioned again, but also because I had sworn after my gallbladder surgery that I'd never have an IV again.  I'd had a bad experience with the nurse trying to get it in and didn't want to go through it all over again (sidenote: it really depends on the nurse.  The one who did it for my lap was aware of my fears and did an excellent job, and of course, Brian held my other hand while she did it).  The doctor's secretary scheduled me for a lap on March 16.  The day after my appointment I came down with a cold/flu combo, the kind that takes forever to go away.  A week later the secretary called and said the doctor needed me to reschedule surgery.  I was scheduled for Feb. 23, only four days away.  I was still coughing a lung up, but prayed fervently it would be gone in time.  They won't put you under if your lungs aren't clear.

Feb. 23, 1999 - I had my lap.  The anasthesiologist determined that my lungs were clear enough to go under.  When I woke up in the recovery room, the same nurse who had done my IV was there to take me back to the "day care."  My first words were, "You sure give good IVs."  She said it that was quite the compliment since she isn't often the one to give them.  Some things really are better to know after the fact.  She took me back to the day care where I became, in her terms, "bright eyed and bushy tailed."  I have no idea why.  The surgical nurse had already told me that my doctor wouldn't see me after surgery but that the day care nurse would be able to tell me what he found.  She told me, "He found some endo and burnt it off."  That was it.  No explanation of how much "some" was or if I'd had adhesions or anything.  The next day Brian made an appointment for me to see the doctor in two weeks.

March 9, 1999 - Back to the doctor we went.  I had just spent two weeks imagining the worst and reading every endo horror story on the internet (again, I want to stress that I'm not discounting what these women are experiencing... it just didn't really sink in that I might not be going through the same thing).  I also did a lot of research at doctors sites and organizations who deal specifically with endo, so I knew what the doctor might say.  I wasn't prepared for what he did say, however. 

He diagnosed me with Stage I endo.  It was located all over my peritoneum, but only in little spots.  He cauterized all of them.  He also mentioned that there were no adhesions and my tubes and ovaries were endo-free and healthy.  Although he suggested that if Brian and I wanted to have a baby, now would be the best time for it (while all the endo is definitely gone), he said that we could try anytime we wanted and it probably wouldn't be a problem.  He's prescribed a stronger birth control pill for me, Orval, to help keep the endo away.  He wasn't sure if I'd know that, if it does, the endo was coming back because women with Stage I don't often feel pain.  Sometimes they feel more than women with Stage IV.  I had had pain the first time, but might not next time.  In the meantime, he's confident that the Ovral will do it's job and I should be endo-free for a long time, if not the rest of my life.  In fact, he said he didn't need to even see me again and I should just go back to my regular doctor.  This really irritated me because I dont think my regular doctor will understand this (afterall, it was only ovulation pain to him!).  However, I'm on the road to recovery now.  I still feel a little crampy and pain in my right and left groin now, but that's probably just the tissue trying to heal over from where the endo was removed.  I've read that this is rather common.  And I've been given hope that we can have children whenever we want (well, before menopause, that is).  Although I know that I'll need to be aware of what my body's telling me in the future so I can catch the endo if it comes back, I'd say that at this point, I have a good outlook for the future.  I won't say it's a happy ending because I know I'm not "cured", unless God sees fit to not let it ever come back, but I will say that I hope it gives hope to other women.  Your case might turn out like mine.  It might not.  Either way, until you talk to your doctor, don't assume the worse like I did.  You'll only waste precious moments of your life in worry!  So, smile, do your research and know that God has you in the palm of His hand.  Oh, and if you feel the need to worry some, it's okay.  Just don't let it consume you. =)

Update: August 1999 - Well, things didn't go as peachy-keen as my gynecologist would have liked me to believe they would.  My pain came back almost immediately after my lap and grew increasingly worse over the months.  Eventually my doctor sent me back to the gynecologist who laughed at me, said that Stage I people shouldn't feel as much pain as I was complaining about (bascially saying it was in my head) and that if it didn't go away, he'd put me on Lupron or Cyclomen.  I told him I didn't want to take these drugs.  He just shrugged.  He also told me that he hadn't actually cauterized the endo because it was in "dangerous areas." Then he sent me away, again with no invitation to return.  When I saw my doctor, he read the the letter from the gynecologist regarding my visit.  It said that I was given compassionate advise, told that if this didn't stop I would be put on Cyclomen and that I was welcome back any time.  A pack of lies!

Because I was very angry and no longer trusted the diagnosis this gynecologist gave me, I asked to be sent to another for a second opinion.  This time the gynecologist I saw was compassionate, did listen to what I had to say and was dismayed by what the other doctor had prescribed and how he had treated me.  Guess what?  Stonger dosages of estrogen will make endo worse!  I had already figured out that the Ovral was probably a bad choice, but the only one to listen to me was Brian.  This doctor said he never prescribes Ovral because it is too strong.  He gave me an exam and based on what he felt and my reaction to sensitive areas, he believes I may have moved up to Stage II (thanks, Ovral).  We discussed my options and he explained that he would only consider Lupron or Ovral if I was experiencing infertility problems.  Thank goodness!  We opted to go with a bcp called Min-Estrin, which has a very low dose of estrogen. And, best of all, I was given an open invitation to return.  Kudrows to Dr. Sharma for making me feel like a person again!

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