Endometriosis & Me
This is my Endo Story. I keep it posted on the web in some form or another to let other women know they are not alone.
My case is slightly different from the average woman’s, because I lived with Stage IV Endo for nearly 15 years before I found relief. It was aggressively progressive and invaded many of my abdominal organs.
From the very first day it happened, I hated it. Even though I had been prepared by every Nun in the school, every Parent-Teacher Mom, and even the women in my own family, I hated it. I was in Catholic School at the time (I hear you groaning), attending weekly Mass when it happened. So there I am, 11 years old in knee highs and standard issue blue plaid, doubled over in pain. By the time the school nurse arranged to take me home, I was close to tears. I had no idea what was wrong. Then I went to the bathroom, and found it was “Just my Period”. It all made sense then why no one seemed too concerned with an eleven year old bent at the waist in tears. I discovered Midol very quickly.
For the next 8 years, I thought periods were supposed to be debilitating. I missed out on so much of my High School and Teen years because for 3 days every month I was in bed with pain. When I was 15, my mother insisted I be put on birth control pills, not because of the periods, but because she thought it was “appropriate”. It really was the best thing that could have happened to me, because the BCPs controlled my periods, which in turn controlled the pain.
In 1987, I enlisted in the US Air Force. At boot camp, all prescription drugs, including BCPs were forbidden. Since I couldn’t prove a medical necessity or the BCPs (remember, I hadn’t been diagnosed yet), so the pills were taken from me. By the time I reached my destination base, Shaw AFB, outside of Sumpter (aka Nowhere), South Carolina, I was beginning to unravel. I had been without any type of hormone therapy for 9 months, and my periods were getting worse every month.
By February of 1988, I was a wreck. It took months for someone to finally get the diagnosis right. Every doctor I saw ruled out Endometriosis because I was too young. I didn’t fit their statistics. According to each OB/Gyn I saw in the early years, only women in their 30’s and 40’s suffered from Endometriosis. Finally at the age of 21, one of the doctors I saw ordered a laperotomy to determine the exact cause of my pelvic pain. What a surprise for the experts to find stage IV Endo in a 21 year old girl.
My first experience with hormone therapy was Danazol. No one ever really explained to me what was going to happen to my body once I began taking Danocrine (aka Danazol). I was in the Air Force when I was first diagnosed, and by the time they finally got around to approving a Lap, I had been miss-diagnosed with Constipation, Appendicitis, Anxiety Attacks, and Depression. When I started taking Danazol, I was 20 years old, and an Airman First Class (ie bottom feeder), I weighed in at 145 at 5’8″ tall. I took the drug for 9 months. It was pathetic! I gained 30 pounds, grew hair in places I didn’t know existed at the time, and my soprano voice that got me thru Basic Air Force Training deepened to something croak-like. The pain reduced to nothing, which was good, but my quality of life sucked.
When I finally recovered from the Lap and returned to the Flight Line, I had been on the Danazol 3 weeks. I had already gained 5 pounds, I weighed 165. As soon as the guys in my unit found out I was taking Danazol, they were on me like white on rice! All the body builders wanted to “buy” pills from me. That was when I found out about the side effects. I went to the base library, and found zip, zilch, nada, on Danazol. So I went into “town” and accessed the Sumpter Public Library. After 2 hours and hundreds of pages, I was freaked. Right around week 5, I started growing black course hair around my nipples, and my pubic hair was slowly traveling up my stomach and down my thighs. My weight rose to 182! Yet the Base doctors kept telling me it was my diet, and refused to even acknowledge that Danazol was having any side affects on my at all.
By week 9, my award-winning soprano voice was gone. I was now somewhere between a squawk and a squeek. Not good enough to perform at base ceremonies, and especially not good enough for a solo. The good news was that I maintained my weight for 4 weeks at 182.
Week 12 arrived with Depression and mood swings on it’s tail. For the next 24 weeks, my emotions ride a nightmare roller-coaster of anger, frustration, tears, sadness, and moments of sheer madness. To top it all off, my sex drive plunges to nothing. My ex-husband and I were fighting almost daily at this point. Now my weight is a whopping 202 and I am placed on waivers for being overweight. The USAF will not recognize the weight gain as a side effect of the hormone treatment. No matter who I turn to or what I say, the Danazol and my Endometriosis are considered irrelevant to my job performance as an Airman First Class. I am even sent to the base psychiatrist for evaluation. He determines my mood swings and aggression are because my “fight/flight” defenses are all screwed up. He won’t come out and say Post Traumatic Stress Syndrome, but that’s what he described to me, my doctors and my flight captain. The aggression wasn’t due to the Danazol, but to the PTSS. The mood swings were also not related to the drug. That was the official Air Force response.
The next 3 months were unbearable. My weight jumped almost overnight to 212 before leveling off at 186, which is the number I just couldn’t seem to shake no matter what I did. At the end of the nine month treatment, the pain returned almost immediately. I went back into the hospital, and my then doctor (a different one this time) ordered a D&C (scrape the lining of the uterus). That seemed to do the trick. I lost a little of the weight, and started taking a very low dose BCP (birth-control pill).
Amazingly enough, I was pain free from 1988 thru 1992. I was honerably discharged in 1989, and by 1991 my weight dropped to 165 and stayed there. I never lost the weight I gained from Danazol, until 1997, when I found Fen-Phen. Then and only then did I drop back down to a happy and contented 155 pounds.
I experienced close to 3 years relief when the Endometriosis hit again. This time it got me in the form of a burst ovarian cyst, while on vacation in Cancun, Mexico.
In June of 1992, my girlfriend and I decided to wash away our man-trouble by running off to Cancun, Mexico for 7 days. On the 6th day of our vacation, my period suddenly started. I was so furious! After a few minutes, I realized the cramps were nothing like I’d felt before, and I was terribly weak. Upon our return to the US, I immediately saw my OB/Gyn. I was hospitalized that very day due to a burst cyst, and worse, the Dr found 2 more on my ovaries. I spent 24-hours in limbo while my HMO and my then doctor (yep, another one!) argued about what, if anything, could be removed. The insurance company was worried about a law-suit if they allowed my doctor to give me a hysterectomy at the age of 25. The HMO approved the removal of one ovary, but only as a last resort.
After 4 hours of surgery and 6 removed cysts (the Doc actually gave me a picture of them, then asked me if I wanted to keep them – YUCK!), and Female Reconstructive Surgery, I spent 6 weeks recovering from the procedure. A 40 minute procedure turned into 4 hours of major surgery. During the surgery there was a complication… they lost my blood pressure at one point. Then during recovery, I went into shock. Instead of one cyst on one ovary, my doctor found six cysts, at least one of which had worked it’s way into my uterine lining. It took 6 weeks for me to recover from the Myomectomy. I kept all my parts, and the doctor removed 6 softball size cysts from within and around my uterus and ovaries.
At my first visit after surgery, the Doc advised me to go on Lupron Depot (Leuprolide Acetate) for 6 – 9 months. The catch: the shots were $300 per injection, and I required a minimum of 6 injections. My Doc worked out a deal with the Pharmaceudical Company and my Insurance carrier, they would pay half and half, only if I agreed to be monitored as part of a study group on the effects of Lupron. What the hell did I know? The Doc assured me I would not have any of the side effects that I experienced with Danazol, so I agreed. I was 25, and I weighed 167, and had worked hard to maintain that weight.
I was placed in the test group and received a Lupron Depot shot every 30 days for 9 months. The first shot came so close after surgery that if there were any side effects, I didn’t notice them. The second shot, however, brought hot flashes. I learned to dress in layers so I’d be prepared. Since I wasn’t in a serious relationship, and I lived with family, the sex-drive issues that other women experienced didn’t affect me.
By the third shot, my hot/cold flashes almost perfectly matched my mood swings. It usually went like this:
hot = anger, frustration, irritation
cold = sadness, loneliness, depression and crying spells
These mood swing/hot flashes went on for the entire 9 months of therapy. I was pain free from 1992 thru 1994, when another very small cyst burst. I went thru all the menopausal symptoms, hot-flashes, terrible mood swings, more hair loss and more weight gain. The pain went away for good. I experienced 4 years of pain free living, however, in 1996, another cyst burst. This time I had a new doctor I liked. And, he specialized in the treatment of Endometriosis.
In 1993 was hospitalized for 7 days, 5 of which I suffered from an extraordinarily high temperature. For the first 5 days I spent in the hospital , the docs fluctuated between Kidney Failure and Chronic Pyelonephritis, due to the scarring of my kidneys. Two Physicians continually speculated about Endometriosis on my Kidneys, but none would consider a side effect of Lupron.
The National Lupron Victims Network has published FDA reports of Pyelonephritis as a result or side effect of Lupron.
Luckily, the cyst that burst in 1994 was very small and was treated with antibiotics. My new doc first placed me on a low dose (the lowest you can go) BCP and began monitoring my progress, upping the dose every 2 months. Unfortunately, the BCPs raised my blood pressure and caused me to experience severe migraine headaches.
By my third visit (6 months), my doc decided to try an agressive treatment of Depo Provera. I would receive a shot every month in the doc’s office. This went on for 3 months. The worst part about these 3 months was the period of 5 days directly following the shot. I was feral in every sense of the word! One minute I was laughing, the next crying. Thank God I was single!!! I began to gain weight in 1 and 2 pound increments. I became a Gym-Junkie. I worked out every day for 1 hour, rain or shine, and kept my weight in check. I ate no red meat (except for special occasions and dates), stuck to a diet of steamed rice and vegetables with the occasional chicken or fish.
On the fourth month I was “graduated” to one shot every two months. I still experienced the 5 day feral period after each shot. I began to notice that my hair was falling out and/or breaking off. Right after my second shot (7 months) I began experiencing severe migraine headaches. I started taking Imatrex for my headaches, and it was instant relief. The “one shot every two months” treatment lasted for 6months. The doc ordered an untra-sound and found that all the cysts, big and small, had disappeared. Immediately after that appointment, my doc retired.
I stayed on Depo Provera for another year with yet another doc, on the regular birth control cycle of one shot every 3 months. I had such good luck with keeping the Endo at bay with Depo, I figured why take a chance on something else. That’s when I noticed the decreased sex-drive and “couldn’t care less” attitude. Also my hair was a mess, one side being thicker than the other! My weight sky-rocketed to well over 200 lbs., and coupled with the loss of sex drive was too much. I stopped the treatment when I did some counting and discovered I’d been on Depo Provera for 2 continuous years.
During this six year pain-free period, I met and married Prince Charming. I had forewarned him about the disease, but I hadn’t really been sick, so they were just words. The adverse affects of Depot were the little things that go a long way in breaking up a marriage, like a loss of sex drive, weight gain, hair loss and mood swings. Somehow I got lucky, and Mr. Levy is a very patient, loving, understanding man, who is helping me get thru this latest nightmare episode of pain. There was also the “children” issue. Because of our age difference (20 years) we both always assumed the other didn’t want children Our assumptions were right. When my sister came to visit in 1997 with my two nephews, I had a rude awakening. Children and I don’t mix well. I love my nephews, but I love them the most when I can return them when I’m done!
I had heard that a tubal ligation would “cure” endo so I asked my new doc about it. Wrong thing to do, especially with an Obstetrician (aka Baby Doctor)! She lectured me for half an hour, and talked me into another round of Depo! Since I didn’t want children and I didn’t want the Endo to come back, I agreed to another round. At my scheduled 3 month shot (April 98), her office suddenly lost my information. I couldn’t get an appointment or anything, even to continue Hormone Therapy. In addition, her office told me my insurance no longer covered Depo Provera, and I would have to pay for the service. My HMO had no idea what the OB’s office was talking about, but it didn’t make any difference. In all the time it took to get the problem straightened out, my period had already started.
The first 2 periods were a breeze (May and June). Then, slowly each month I began having one, then two and so on, bad days with each passing month. By August of 1998, I was desperate for help. I began aggressively seeking treatment, and searching for a Gynecologist without Obstetrics in October 1998.
When I say I don’t know what I did to deserve this man, I really mean it. He is the most loving supportive person I have ever encountered. We met in 1994, and after an absolutely torrid, romance-novel-esque love affair, we got married in 1996. I told him about the Endometriosis before we got serious, but I was feeling great, no pain, no problems, so the words had no impact. In fact, until the last 6 months, it’s been pretty smooth sailing. We had a little bump in 1997 when I was placed on Depot Provera indefinately. The mood swings and lack of libido was difficult on Mikey, but we made it through just fine.
Luckily, he does not want children, and I’ve decided that children and pain don’t mix. So the issue was laid to rest early on. I know it kills him to see me in pain, so I try very hard to hide it most of the time. He keeps all my perscriptions for pain filled and up to date, makes sure he is with me at doctor visits, and keeps Pink Blankey ready and available for couch duty at the drop of a hat.
Please visit MENDO: Men and Endometriosis to hear the men’s or the other side of dealing with Endometriosis. Both women with Endometriosis and their partners should visit this site, as it really helps to get an explanation of what your partner is going through while you are writhing in pain. Even though this site was written by and for men, it really is for anyone who loves a woman with Endometriosis.
With any luck, I’ll get Prince Charming to write about how he deals with me during difficult episodes. Don’t hold your breath, ’cause he’s a tough guy, and tough guys don’t discuss feelings. But they sure come through when the chips are down and the vicodin is all gone!!
My second opinion, on January 4, 1999, was with a Reproductive Endocrinologist, Dr. Eric Surrey. After an ultrasound exam, Dr. Surrey found evidence of Adenomyosis ( Endometriosis-Interna or Fibroids ) in at least 2 places on my uterus, and the Endometriosis scar tissue is plainly evident all over my uterus. He immediately ordered a Bone Scan and an exam by a GI Specialist. My inclination is to try the Lupron, but I am very hesitant to put my body through another course of harsh therapy. Especially since there is little to no data on multiple rounds of Lupron as hormone replacement therapy. Also, my research indicates that Lupron, in the long run, does not provide adequate relief for Adenomyosis.
I’ve discovered that Adenomyosis affects women over 30 who have carried multiple pregnancies to term. However, I have never been pregnant. The closest thing to pregnant I’ve ever been was 9 months on Danazol, and 9 months on Lupron, 2 (multiple) interruptions of menstruation lasting a minimum of nine months.
Did Danazol cause the Adenomyosis? Did Lupron? As if I’ll ever get an honest answer to that question! HAH! I’ll have better luck waiting for a cure!
On February 4, 1999 I saw a gastrointerologist (GI). He found reason to order a colonoscopy to determine what if anything is causing my monthly rectal bleeding. I keep praying that I dodged the Endo on the Bowel bullet, and I’m holding my breath until after the results are in.
I got into bed on December 4, 1998 and have not left since except to go to the ER, and doctor’s visits. I can only eat soft mushy foods, as solid food causes severe pain and projectile vomiting. On February5, 1999, the GI tells me to stop all solid foods, until I have surgery. The blockage to my bowel system is so severe that even mushy solids will cause a bowel rupture.
The Insurance Company started messing around, and even though the GI found major masses blocking my Sigmoid Colon, and even tho he has formally reported that surgery is imminent, I’m basically in Limbo. The Surrey’s can not treat me as they fall under the Infertility category which my insurance does not cover. So thru a lot of screaming, threatening and about a dozen ER visits, I am finally referred to the Comprehensive Cancer Center at Cedar’s Sinai Medical Center. Dr. Ron Leuchter is my Gynecological Oncologist, and he explains that I have Severe, Chronic Stage IV Endometriosis that has invaded my Bowel.
The first thing Dr Leuchter orders is a series of tests. The first is a series of Kidney x-rays to determine the extent of the Endo on my Kidneys thru to my bladder to determine adhesion damage. The second is a Barium Enema to try and locate the exact location of the mass and adhesions strangling my bowel system.
I end up in the ER 12 hours after the Barium Enema. I’ve been protectile vomiting for the past 3 hours and the pain is so bad I can barely take a breath. When we get to the ER and they run some tests, do some x-rays, they discover that the barium has gotten stuck at the location of the mass. So they hook me up to an IV to try and flush my system and continue to inject me with Delauded, which is 8 times the strength of Morphine. After 3 hours of pain – I’ve become sedated enough for the barium to pass thru the bowel system. What a mess, and the smell was enough to kill small children and animals!
I believe HRT is the key to saving your organs. But you must make informed educated decisions. Look at long term and short term health risks. Make sure you take into consideration your quality of life. Will it be better or worse on HRT? Only you can make that decision with your spouse and family.
On March 26, 1999 I had a hysterectomy. The damage to my abdominal organs was incredible. I lost my Sigmoid Colon, Appendix, Uterus, Fallopian Tubes, Ovaries. Adhesions, cysts and small pre-cancerous tumors were removed from my Stomache, Kidneys, Ureturs, Bladder, Liver, Abdominal Wall, Cervix, Intestines and Pancreas. The biopsy report on my Uterus and Ovaries indicated cancerous cells were present, but all glands were biopsied and no cancer was detected – I has surgery in the nick of time.
I did very well, and was symptom free, pain free for 18 months. In October 2000, I had a second surgery due to complications from the Bowel Resection, and two small cysts were removed at the time of surgery.
I am only one woman, my experience with pain will certainly differ from others.
I have found great relief both physically and mentally by closely monitoring my pain medications. At the very first twinge of something that might remotely feel like pain, I take Vicodine. At first Iwas afraid of becoming addicted, but I soon realized that when I use the medication correctly, my good days are really really good. That is not to say it makes the bad days any less bad, they simply make them more tolerable. I also had to keep reminding myself that a junkie gets high on a daily basis, my habit is monthly, 7 days every month to be exact.
Some women will disagree vehemently with me, and that’s quite alright. Other’s insist that herbal remedies are working well for them. I agree wholeheartedly with that approach as well. Remember that every woman’s experience with Endometriosis or Adenomyosis is drastically different.
In my case I use the pain medications as a tool. My husband helps to monitor both my pain and my usage of painmedications. Eventually I would like to try an herbal remedy, but am too intimidated and frightened by the pain. By conquering the fear through therapy and the use of narcotics, I can then attempt to go the herbal route.And I know that I could tough out the first few months, but my husband can’t bear to see me in pain. So why should bwe both be miserable when I can stick with Vicodine?
In October 1998, I increased my Vicodin to 750mg, and at the first moment I felt a twinge of pain, I took a pill. I did this for the entire four days of my period, from the very first PMS sign the night before it started. On the fifth day I took a 750 in the morning and followed up with a 550 every four hours. On the sixth day, I started in the morning with a 550, and then didn’t take another until I felt pain almost 7 hours later. By day seven I took one 550 in the morning and that was it. Day eight I woke up happier and feeling better than ever.
The key is the drugs, and very tight monitoring of your usage. My husband says I act like a junkie for one week of every month. And I probably do! But the main point is that I able to schedule my life around the bad days, instead of hoping for “one good day next week”.
I have also found that pain has played a major part in my overall mental well being. A sympathetic therapist is key in overcoming the depression brought on by chronic intense pain. And a sympathetic therapist can also masquerade as a religious group, on-line friends, anyone who will listen and validate the pain and fear that come with Endometriosis and Adenomyosis. Remember that pain is also associated with psychological trauma, and the best way to treat that type of trauma is with a caring gentle sympathetic approach.
All the depression started going away as I kept a tight control on my pain medications. I am less and less emotional, and way more relaxed. I am able to weigh all the options in there real light. They aren’t pretty, but only having to deal with the emotional pain of the disease, and not the double whammy of the pain/emotional package is a huge relief. Not having to fight every day in pain has allowed me to think much more clearly, and I can talk about the options with my husband without breaking down into tears.
So you see, I am speaking from heartfelt experience when I tell you I understand all too well that feeling of the impending black hole, swallowing everything you worked for slowly and painfully. Despair really isn’t a strong enough word, it really is closer to grief. Anyway, there is a light at the end of the tunnel, and I promise it’s not a train! 😉