Endo Entrance
The Comfort Zone Front Door
I have always had painful and irratic periods but was told that it was normal and due to low body weight...welcome to womanhood. When I was 17, I began taking birth contol pills (BCPs) to try and regulate my cycles and reduce the pain. For 5 1/2 years that seemed to do the trick although I did notice increasing back pain with my periods.
In March of 1997, I began having pelvic pain that didn't coincide with my cycle. It began the week after my period and showed now signs letting up. I spent the next month in and out of my GP's office and the hospital running tests for various urinary and kidney problems. The dr even gave me shot of cortizone for no explained reason...and I let him!! Finally, after begging for a referral to my ob/gyn, he gave in and sent me on my way. In May, I had a laparoscopy which diagnosed endometriosis and adhesions which caused particular trouble where they attached my bowel to my pelvic wall.
All visible signs of the disease were removed and I remained on BCPs. After the lap, I waited for weeks to see improvement and was told I was still healing from the surgery (from which I was originally told I would recover in 3-4 days). In October, I began treatment with Depo-Provera, receiving an injection once every 3 months. With the exception of 3 good weeks in December, I have seen no improvement and an increase in symptoms and their intensity. During the first Depo cycle, I experienced strong side effects including severe mood swings, hot flashes and headaches. My menstral cycle did stop but the daily pain persisted. During the second cycle, my moods were much more even but the heaaches and hotflashes were joined by break throgh bleeding and long periods. During the 3 week period, I had the worst pain ever in my low back, abdomen and middle back which extended around my torso. During this cycle, I also began having intense pain and bleeding with intercourse.
I have been to see both my regular gyn and another for a second opinion. Both agree that depo doesn't seem to be working for me, and my choices are now Lupron and/or another lap. Call me stubborn but I'm just not ready for either one yet, especially lupron. We would like to wait a few years to have children and would like to hold out on lupron in case we need it then. I have decided to try one more cycle of Depo-Provera before making any changes.
Due to the bleeding with intercourse, I decided to do 2 things: bump up my injection of Depo to 9 weeks and go ahead and have another lap done. I figured it's time to see what's going on in there and if I don't do it now, I won't be able to until July (and that's too long for a young couple to wait, ya know?)
One week after the depo shot, the symptoms seemed to disappear but the dr said "let's go ahead with the lap." Afterall, something has been causing the pain.
The results of the lap were encouraging. He found no signs of endo other than an old lesion on my cervix which he sent to pathology. He did find some major adhesions binding my ascending colon (aka, right 1/3 of my large intestine) to my pelvic wall. Hallelujah!! I'm not nuts!
After the soreness of the surgery went away, I found myself in the same painful state I was in before surgery. I am very frustrated. Bleeding with intercourse continues along with some pain. At my post-op appointment, the dr told me he had no explanations for me. He doesn't agree with the theory that adhesions can form from themselves. In other words, he just cut, but did not remove the adhesions. He did this in the first lap and the adhesions mysteriously reformed in the same place...hmmmm. He attributes the bleeding with break through bleeding due to the Depo Provera. As of 5/17, I started back on BCP's (LO/OVRAL-28). I have since had some intense, nauseating cramps but I'm hoping they will subside after my body gets used to the hormone adjustment. I also gained 10 pounds in 2 months.
Since switching back to BCPs, I had difficulty finding one that didn't make my stomach turn somersaults in the afternoons. I switched from LO/OVRAL to ORTHO-CYCLEN and had even worse nausea. I started taking it at night before bedtime and did better. In December of 98, my husband and I decided that the hotflashes, migraines and continued pain were just not worth the security of being on the pill. If I was going to have pain anyway, at least maybe we could get rid of the side effects. He was extremely supportive of going natural for a while and giving my body a chance to get clean from the synthetic hormones. From Christmas until August, I had 3 periods. I spent more money on pregnancy tests than I did on sanitary products! Oddly, within 3 weeks of going off the pill, not only did the side effects (migraines, hot flashes, etc) go away, so did the pain!
Here's the kicker to me...the nurse is always telling me that my pain is stress related. In January of 1999, we found out my husband's father had cancer and he passed away in March. If there has ever been a stressful time in my life, that was it. But that's also when my pain disappeared! Did my mind tell my body that there just wasn't time right now? Who knows. But with the endo pain gone, I was better able to be supportive of my husband during this incredibly difficult time. Sometimes, I just have to give up looking for answers and just be grateful for unexpected blessings.
I now have pain that I've never experienced before (since August). Its pinching abdominal pain along with rectal cramps and stabbing pain on my right side. I had some rectal bleeding (just a light streak) with my last period along with the worst pain combinations yet (intestinal, rectal AND uterine cramps) at a level that no pain killers touched. My period was oddly light, though. Four days after I called the nurse, she called me to say I needed to see a specialist about the rectal bleeding. I'm in the process of trying to get in. I'm not panicked. At this point I strongly believe its hemorrhoids or IBS. I have my annual pap appointment next month. We'll see what they say. I'm so tired of getting worked up just to hear the same old, stupid answer..."its stress." I have found that the times I feel the most stressed are when I have to call and talk to the nurse. Ironic isn't it?
Despite the frustrations of endo, I feel I have been blessed in many ways. First of all, the support group I have found is made up of some of the most compassionate, understanding people I know. I attribute my increasing strength and understanding to their support and encouragement. Furthermore, I have also never felt so educated about my own body and therefore so in control. Women shouldn't wait til something major happens to educate themselves. And that is now a mission for me...to join forces with other women with endometriosis to educate other women and girls as well as families and friends about the mysterious disease which we "affectionately" call Endo.
And finally, I would like to thank Cody, my husband of three and a half years. He has made such an effort to understand and tolerate the pain, the side effects and my often constant preoccupation with this disease.
And to those of you who have taken the time to read this, whether out of interest or seeking a familiar story, I thank you. Education and an open mind is the first step in dealing with endo. Your willingness to take the time provides support in ways that you may never understand...just know that you are appreciated. If you would like more information about my story, check out the links below or return to the Endo Entrance for more information about endo in general or other people's stories and sites...