My name is Debbie Vickery, and this is the story of my experience with endometriosis.

I experienced the pain, bloating, discomfort, etc., endo sufferers are so familiar with from the time I had my first period. I didn't know at the time that it was not normal. I was diagnosed with endo about 10 years ago. My husband and I had been trying for over a year and half to conceive our third child (my first was born when I was 19, the second when I was 21). I finally managed to conceive, but a few weeks later began to bleed heavily. My gyn examined me and told me I was having a miscarriage, and asked a lot of questions about my pain, difficulty conceiving, etc. He could feel the endometriomas during the pelvic exam. He performed an exploratory lap, lasered out some of the endo (he did not feel comfortable using the laser on my bowel, bladder and kidney) and put me on a course of Danazol. I was 23.

I had many of the side effects known to come along with Danazol: my voice deepened, my skin became very oily and acne prone, I was very depressed, I put on 12 pounds, and continued to experience the pain. It did lessen, but not completely. As soon as I went off the Danazol the pain returned. Fortunately, all the side effects (expect the 12 pounds - go figure) went away after I stopped taking it.

Our family relocated a few months later to Baltimore (we were in Kansas City, MO), and I had to find a new Dr. Unfortunately my health plan was an HMO. I ultimately went through 6 different doctors in three months, none of whom did anything to treat the endo or relieve my pain. I finally found a Dr. who did another lap and put me on a 6-month course of Synarel. I put up with the hot flashes, wild mood swings and insomnia in hopes that the endo would go away. Again, the pain lessened a bit, but did not stop completely. As soon as I went off, the pain returned worse than before. At this point I was told that my only recourse was to have a hyst. I was still holding out hope that I could have another child, plus I was very frightened of the irreversibility of it. I was also afraid of exchanging one set of problems for another: what would HRT be like, when I couldn't even take BCP because of migraines? Would I feel like less of a woman without my uterus? Would there be other problems that would crop up that I couldn't even imagine, but find out about when it was too late? And so on. So I went in search of another Dr.

I found Dr. John Rock at Johns Hopkins here in Baltimore, who is one of the most womnderful Dr.'s I have ever met. He was compassionate, understanding, helpful - he actually explained everything that was happening, what the various odds were of recurrence of endo associated with the different treatment methods, etc. He said that if I wanted to have another child he would help me with every available option to accomplish it. He performed a lap to clean out the endo, hoping I might become pregnant immediately afterwards. When he actually went in what he found was worse than either of us suspected. Stage 4, on/in/through the bowel walls, embedded in the bladder walls, pelvic walls, uterus, etc. It was everywhere. He excised as much as he could, then discussed with me the options. He was still willing to help me conceive, but I was in so much pain I justed wanted it to be all over with. Besides, the odds were good that I would miscarry, and the first experience with that I wanted to be my last. I chose to have a hyst, but to keep the one healthy ovary. He recommended that I have both ovaries out and stay off estrogen for several years, but I wanted to keep my ovary. He agreed and did the hyst, along with a gastro who removed the affected parts of the bowel. I was 26.

Less than 6 months later all symptoms had returned - pain, bloating, painful intercourse, recurrent UTI and yeast infections, etc., along with a newcomer: a cyst on my ovary. By this time Dr. Rock had gone to Atlanta, so I went to his partner Dr. Swanson. He put me on a mild BCP to try to shrink the cyst. The cyst did shrink, but returned immediately when I went off the BCP. Dr. Swanson did a lap to remove the cyst and clean up any endo and adhesions he found.

I felt pretty good for about a year after that. But, the pain started creeping back in, and I began spotting blood - which disturbed me as I had had a hyst and shouldn't have been bleeding. The cyst was back. I was put on Zoladex in hopes that I could save the ovary. Again, miserable luck with the meds, cyst was back along with the pain as soon as I went off. As I was about to change health plans, I waited for a few months until I had a new Dr. to consider treatment. After much thought and discussion with my new doctor and my family, I decided to have the ovary out. I figured that it would put an end to the endo once and for all because there would no longer be any estrogen to drive the growth. We agreed that after the surgery I would take no estrogen for at lest 2 years, then consider taking small doses if all was well after the two years. I had open abdominal surgery to remove the ovary and the vast network of adhesions, and foolishly thought my problems were over.

That was a year and a half ago. I felt great for almost a year (seems to be my feel-good limit), then I began to feel the familiar pain and bloating, and painful intercourse. Couldn't be, I told myself. Must be adhesions, so I'll just live with it. Then I began to get this dull throbbing ache around my right kidney area. I ignored it, until I started having the most excruciating pain on my entire right side, worse than any endo pain. AFter multiple IVP's and renal ultrasounds they discovered a ureteral blockage, which had to be surgically removed. Felt pretty good for a couple of weeks, and the throbbing pain returned. A renal scan showed recurrent hydronephrosis (a condition where the urine backs up into the kidney instead of draining into the bladder). A cystoscopy showed no bloackage inside the ureter, and all tests showed otherwise normal function, so the urologist was stumped. Just to rule out tumors and the like, he ordered a CT of my pelvis and abdomen. Voila! He discovered an endometrioma, slightly larger than a quarter. It appeared that the endmetrioma was pressing on the ureter preventing proper drainage, as well as causing a good deal of pain.

He referred me back to my gyn, who scheduled me for more open abdominal surgery to remove the endometrioma and the ever-stubborn network of adhesions. He ended up calling in an oncologist to help remove the endo, which was embedded in the pelvic wall, completely wrapped around the ureter, and adhered to the bladder. Everything was cleaned out, but recovery was slow. After almost 8 weeks, my left leg remains numb was nerve damage during surgery, urination is painful due to a recurrent UTI and/or adhesions pulling on th ureters, and my body chemistry is completely out of wack. As a result my bowels alternate between constipation and diarrhea, I have insomnia, hot flahses, inability to concentrate and mild depression. Dr. assures me these will ease with time as my body adjusts. I am scheduled to see a specialist in a few weeks to help me put together a plan for HRT. I am 33.

This brings us to today, where I am hopeful that by telling my story I will help others known what endo is like, at least for me. I'm sure there are many who read this story and see themselves, or someone they love.

Well, now that your eyes are all bloodshot from reading my personal version of 'War and Peace', I will end for now. Thanks, everyone, for listening. It feels good to talk about it, especially with people who know exactly what it's all about.

God Bless,

Deb