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The Story of My Battle with Endometriosis

(last updated November, 2005)

I had terrible mystery belly aches, beginning at the age of eight or so.
Nobody suspected female problems, because I hadn't even started my period yet. The pain kept getting worse, still nobody believed me. I was conditioned not to admit the pain, nobody would believe me when I told them about it anyway. I actually believed it was in my head, because they couldn't find the cause of the pain. I thought there was something wrong with me since I couldn't make it go away.

By the time I was in my early twenties,
I started having what I was told were ovarian cysts. The docs kept adjusting my bcp dosage, and the pain kept getting worse. I quit taking the pills, and only had occassional pains for a few years.

The summer of 98, the pain was so bad I went to the ER for an ultrasound. I knew that my mind would not put me through that kind of agony.  I was laying on the waiting room floor in a fetal position, crying my eyeballs out.  Paid cash ($600) for an ultrasound that only showed that my left ovary was enlarged. the doctors said that didn't account for the pain I was in. I had no insurance and seemingly no hope of getting any help with my problems.

After I got married to my long-term boyfriend in Nov 98, I was put on his insurance. I made an appointment with the only gyn on the insurance list that didn't have a six month waiting period before they could see a new patient. This doctor immediately told me I had the classic symptoms of endometriosis. He did my first lap. Strictly diagnostic. He told me that since he couldn't remove all of the endo, he didn't remove any of it.  Then proceded to put me on Lupron. That was March 99, right after my 30th birthday.  He never told me that there was a surgeon in our area who could (and later did) remove it successfully.

Took Lupron all six months.
Had terrible side effects, which lingered a year following my last injection which was in August of '99. The pain kept getting worse and worse after the first couple shots.
For me, the worst side effects were memory loss and depression, but that's not to mention the hot flashes, night sweats, weight gain, mood swings, confusion, dizziness, and the list goes on. The doctor had only told me that I "might have hot flashes"
and that my periods would stop. I was never given or even offered a patient information sheet to read, and had no idea what to expect.

After taking the Lupron, the pain was so severe that I could barely function. That doctor told me my options were either to take Depo-Provera, get pregnant, or have a hysterectomy.
I didn't like those options so I went for a second opinion and was put on antidepressants and told that they would help with the pain, which they did not, and asked if I thought I needed to see a psychiatrist. Third try was the charm.  I found a new doctor, who is a specialist in women's laser surgery. Decided I didn't want to treat the symptoms, I wanted as much of the disease out of me as possible.

I missed over a month of work because the pain had gotten so bad.  I could barely crawl out of bed to go to the bathroom from all the adhesions left over from that first lap.
Had my second lap in November 99.
The new doctor is the most caring, wonderful doc I have ever met. He removed massive amounts of endo and adhesions (mostly from my cul de sac), stripped almost my entire peritoneum because of the amount of implants located there, and performed what is called a presacral neurectomy (or PSN, where the doctor cuts certain nerves that transmit pain from your ovaries and uterus). Everything came back from pathology as "normal endometrial tissue" except the "normal nerve tissue". And I have a two-hour long video of the entire procedure.

Three months after the surgery, I noticed my periods gradually becoming less painful each month. Six months after the surgery, I barely had any symptoms of the endo whatsoever. Even the "IBS" and monthly bladder pains (which I had been told were not related to the endo) disappeared!

Best of all:
In September, 2000 I discovered that I was pregnant with my first baby. After becoming pregnant, all endo symptoms and Lupron side effects totally vanished! Baby "Jennifer Lorraine" was expected to be born on May 8, 2001.


Update:  Baby J was born three weeks early in April, 2001 via emergency c-section (had nothing to do with the endo).  She weighed in at 5 lbs, 6 oz and had perfect apgar scores which meant that luckily she did not have to stay in NICU.

Breastfeeding held off the return of my monthly cycles for a wonderful 15 months.  I would highly recommend it for anyone with endo who finds themselves lucky enough to have any children.  My first menstrual period after the birth of my daughter was so completely different than any I had experienced before... No pain whatsoever!  I bled thin, bright red blood - no clots, no clumps, no nasty dark brown stuff, no odor.  Since I didn't realize this was what a period was supposed to be like, I called my doc on a Saturday, freaking out!  I was certain something was terribly wrong. 

After that first period, some of the pain gradually worsened.  I am fairly certain that I developed adhesions from the c-section and the endo has progressed back to what it was like about four or five years ago, before my first lap.  I was planning on seeing my specialist for another lap as soon as my baby weaned, or when the pain became unbearable, or after ttc for a year, whichever came first, but found myself pregnant instead!  M was born (VBAC!) in November, 2003.

The second pregnancy was totally different than the first.  The endo pain did not go completely away like it did the first time.  After baby was born, I started having monthly bouts of my typical endo symptoms - IBS, cramps, mood swings - but no AF.  I started taking the progestin-only mini-pill in an attempt to keep the endo at bay until I got the nerve up to have another surgery.

The mini-pill did nothing for my pain levels, so I quit taking it.  I told myself I would wait until my baby started solid food to have surgery, then I put it off until my menses resumed.  After AF finally arrived, I had no more excuses and called my surgeon.  My third lap surgery was on Dec 3, 2004, just five years after my last one.  Doc again said he found "massive amounts" of endo in my cul-de-sac and adhesions on both ovaries.  He also said that my uterus is very enlarged (to the size of a 14-16 week pregnancy!), which is a sign of adenomyosis, or endo growing inside the uterine muscle.  It took six incisions this time for him to get all the endo out, and the surgery lasted two hours when he was expecting it to last less than one hour.

I am currently in the healing stages following surgery, but already it seems that most of my pain is gone.  It took much longer this time for the incisions to heal, and when I went to see my doctor about it, he said it was because five of the six incisions were at the same places as the last time and the scar tissue was making it heal slower.  Right now it's just a waiting game to see if I eventually need a hysterectomy, if I do indeed have adenomyosis.  *sigh*  But I'm trying real hard not to dwell on the what-ifs and am thankful that Dr. Liu hasn't retired yet!

 

<update>

Well, while most of the pain is gone, I am still feeling constant acheyness and occassional cramps.  Except during my menses, it isn't so bad that I need to take anything for it, and it doesn't really interfere with daily activities.  But it is definitely having an effect on my moods, leaving me feeling very angry and grouchy most of the time.  So I alternate between taking Tylenol and Advil, and hope my liver holds out until menopause.  *sigh*  Endo sucks!!

11/15/2005

I am currently on month four of progestin-only mini-pill and it does seem to be taking care of my pain.  It took three packs of the pills before I noticed any difference, and now it really does seem to be helping.  I am no longer taking pain meds (otc or Rx) every single day, and very rarely do I need anything stronger than over-the-counter Motrin.  Let's hope this continues!  I really don't want another surgery anytime soon...

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