Goerwitz

[Editor's note: To read more from Rhonda, see her blog at http://iwillovercomeprocrastination.blogspot.com/. ]

Hi Amy! I wanted to share my endometriosis story.

I recently had a total hysterectomy after suffering for years from undiagnosed endometriosis. When I was researching endo, I found that most of the endo advice on the internet is geared toward young women who still want to have children. I didn’t fit into that category, so I could find very little information to help me.

Also, most of the information about hysterectomies advises women to keep an ovary at all costs. With endo, there are studies that show that keeping an ovary almost guarantees a recurrence of symptoms. If people read the literature meant for "normal" women and don’t factor in their endometriosis, they may decide on a course of treatment that isn’t really in their best interest.

My story:

In my teens, I had horrible periods with heavy bleeding and severe cramps so bad that I would often throw up. My doctor performed a laparascopy when I was sixteen but the results were "inconclusive." However, he said I showed every sign of endometriosis and should prepare for the eventuality that I might never have children. I launched into my career and spent my twenties and early thirties on the birth control pill. My choice wasn’t made with any thought of endometriosis, but the pill did make my periods much easier. I suppose it also had the bonus effect of keeping my endo in check.

I married at 33, and soon after I began having side effects with the pill. Breakthrough bleeding and tender breasts were annoying enough, but it also began to bother me that I’d been on birth control for almost 15 years. I decided to give my body a break and quit taking the pill. My periods steadily became more painful, just like during my teenage years, but that seemed normal to me. I had told my husband that I might not be able to have children, so when two years went by without conceiving, we just assumed the doctor was right. I made peace with the fact that I was going to be childless and began to plan my future accordingly.

Just before my 37th birthday, I missed my period. After a couple of weeks, I bought a home pregnancy kit and the results floored me. I was pregnant! Surprisingly, I had a textbook pregnancy with little discomfort and no problems. After 26 hours of labor, I was exhausted and elected to have a c-section. Looking back, my first clue that something might be wrong came while I was in the hospital after my c-section. Every time I moved, the left side of my incision hurt. The pain seemed different than the right side, and I mentioned it to my doctor. Her theory was that she had accidentally torn the left side of my incision while extracting my daughter. The explanation seemed plausible, so I accepted the pain and moved on.

I recovered quickly from childbirth and loved motherhood. However, after a few months my energy level bottomed out. After work I sometimes felt so tired that I wanted to cry. I thought I was depressed and made a sincere effort to snap out of it. I began taking vitamins, eating right, and exercising on a regular basis. For a few weeks, my self-help regimen seemed to work. Then I noticed a strange sensation in my pelvic area, a burning sensation that never seemed to go away. I felt a pulling sensation on my left side when I did sit-ups, but I wrote that off as scar tissue from my c-section. My lower back also ached constantly and I began to worry that I had arthritis. To add further insult, I gained ten pounds even though I was working out. My face looked puffy and bloated, and for two weeks a month my breasts felt as sore and swollen as if I was pregnant.

Finally, I got fed up with feeling sick. I had every blood test imaginable, but all the results came back normal. I scheduled a routine ob-gyn checkup. When the gynecologist tried to feel my left ovary, I just about jumped up off the table. The pain was unbearable and lingered for several days afterward.

The gynecologist recommended an ultrasound, which showed I had a large cyst on my left ovary. The radiologist diagnosed it as a normal cyst that would take care of itself and suggested a follow-up visit in six weeks. I felt normal, or at least my new, lesser version of normal, so I procrastinated. Four months later, I experienced pain on my left side so excruciating that it woke me from a sound sleep. Needless to say, I called for my follow-up visit the next day!

The ultrasound determined that my cyst was exactly the same as it had been four months earlier, maybe even a little bigger. When I overheard the radiology technician conferring with her supervisor, I overheard the word "endometrioma." I asked if that meant endometriosis, and the technician said yes.

My gynecologist sent me in for an MRI, which was inconclusive. I started reading about endometriosis and knew in my heart what my eventual diagnosis would be. We scheduled a diagnostic laparoscopy, and sure enough, I had stage 3 endometriosis. My left ovary had a very large endometrioma on it. Adhesions and scar tissue had fused my left ovary and fallopian tube into my abdominal wall. My uterus, bladder, and colon were covered with adhesions, and the ureter on my left side was almost encapsulated. The only good news—my right ovary and right side appeared to be normal. The doctor removed as much of the endometrioma as she could in order to treat my worst symptoms, but my problems were too great to address with a laparoscopic procedure.

My recovery from the laparoscopy took just a couple of days, but now I faced a hard decision. My colon, bladder, and left kidney were in danger—how did I want to treat my endometriosis? The gynecologist recommended a complete hysterectomy – removal of the uterus, both ovaries, and cervix.

I read everything I could find about endometriosis and discovered that endometriosis often becomes much worse after a pregnancy. Because of the elevated hormone levels during pregnancy, I guess this news shouldn’t be surprising. However, most of the endometriosis treatments I read about were geared toward women who wanted to preserve their fertility at all costs. I was 40 years old with a beautiful two year-old daughter. Taking harsh drugs and undergoing repeated surgeries didn’t seem to be a logical option for me, especially since I wasn’t desperate to have more children.

When I read about hysterectomies, everyone recommended saving one ovary if possible because natural hormones are better than synthetic. However, endometriosis thrives on estrogen. If I kept my right ovary, the endometriosis might grow back. In fact, more than one study I read indicated that endometriosis would probably grow back in the presence of any form of estrogen, natural or synthetic. That meant hormone replacement therapy might not be smart, either. If I were “normal”, I would want to preserve an ovary. However, I was not “normal”. I had stage 3 endometriosis threatening to harm some vital organs!

Finally, I decided to have a total hysterectomy and go without HRT. After all, if your disease thrives on hormones, why would you want to feed it?

I went in for my hysterectomy early on a Tuesday morning. On Wednesday, I developed a high fever. The pathology reports on my removed organs came back showing that I had had an acute infection in both my fallopian tubes before surgery. The doctor put me on high-dose antibiotics and I remained in the hospital until Friday night. They finally released me at 8 pm, after I had been fever-free for 24 hours.

I’m now almost a month post-surgery. The pathology report showed that my right ovary and fallopian tube were covered in endometriosis, so I’m happy with my decision to remove both ovaries. If I’d elected to leave the ovary, my odds of having more endo growth and a repeat surgery would have been sky-high.

I already feel better than I did before my surgery. My incision is healing well and I’m finally free from pain! The burning sensation in my pelvis and the constant pain in my left side are gone. My doctor has recommended a natural herbal supplement to treat my menopause symptoms, and so far it’s working. I’ve had some hot flashes, but nothing unbearable—compared with the pain of endo, hot flashes are a minor annoyance. Because I’m not taking HRT, I’m making sure to take calcium every day to prevent osteoporosis. And I’m happy to report that I’ve lost 10 pounds and my face isn’t puffy any more.

I think the most important thing to remember after a major surgery like this is: You can’t go back, you can only go forward with a positive attitude. If you want to be miserable, you're guaranteed to find things in your life that make you miserable. If you want to be happy, you must find the happy things in your life and concentrate on them.

And I’m happy with my decision. After surviving the last two years of fatigue and constant pain, I think I can survive anything. My surgery and decision to go without HRT has put the odds in my favor for a full, endometriosis-free recovery. There’s nothing left to do but get well and hope for the best!

Here's my update (7 March 2008):

I'm now almost a year and a half post-surgery and feeling WONDERFUL! I've lost almost 30 pounds—with the help of Nutrisystem, of course—but I believe the weight came off just as easily as it would have before surgery.

The first six months after surgery, my doctor recommended that I not take hormones. I suffered through it, but the symptoms of having absolutely zero natural hormones are horrible. For me, the hot flashes were annoying but not major. My worst symptom, which became truly debilitating, was not being able to sleep. I'd read about this and knew it was normal, but I never expected my sleep patterns could be so completely messed up. I am serious when I say that I went days without sleep. This wasn't normal insomnia, where your mind is too busy to shut off, etc. Instead, it felt like my brain was truly not able to go to sleep. Until you've felt it, it's hard to comprehend. My doc agreed to prescribe Ambien and Lunesta, but they didn't provide a natural sleep and I was always exhausted.

After six months, my doctor put me on the lowest possible dose of Premarin. Within two or three days, I could finally SLEEP! No more hot flashes! And no more vaginal dryness, which had begun to get annoying. Best of all, even after a year I have no more endometriosis! Now that my hormones are evened out, I don't think it will come back. Before surgery, my hormones were raging out of control. Now I take exactly the same tiny dose every day, hopefully just enough to keep my body in sync but not enough to grow extra endometrial tissue. Even if it does come back, I'll just get it blasted outta there and move on. Trust me, the benefits of HRT far outweigh the possible negatives.

I do have a confession—I have taken Wellbutrin for the past six or so months for "depression." I put it in quotes because I don't think I was depressed in any emotional way. It was more like I had trouble thinking and concentrating on anything, and I was so tired all the time. My doctor believes my brain chemistry got out of whack while I was without hormones and sleep for so long, and I agree. The first three days on the Wellbutrin, I could literally feel the rush in my brain as the medicine took effect. Once again, until you've felt the effects of zero hormones, it's hard to explain how fundamentally your body changes. As one of my girlfriends always says—"Better living through chemistry." How true that can be! However, I don't like taking unnecessary meds. I'll be tapering off the Wellbutrin soon and I truly think I'll be just fine now that I've had time to adjust to the HRT.

Bottom line—I was 40 years old and felt like hell every day because of my endometriosis. Now I'm almost 42 and feel better than I have in years. The hysterectomy was the best thing I could possibly have done for myself.

I understand this surgery is radical and not for everyone. However, living with pain of stage three endometriosis every day of your life is pretty radical, too, when you stop and think about it. Please, please, please don't read all the horror stories posted on the web and believe that's the way hysterectomies always turn out. I personally believe that angry, hurting people write about their troubles more often than happy people. The happy people rarely post their stories because they're too busy living their lives and having fun!

If I can help anyone, I'm willing to answer questions and share my experiences. My e-mail address is: WorkingMomsofAmerica@gmail.com. And check out my blog, http://iwillovercomeprocrastination.blogspot.com/.

Rhonda