Trying to find ways to cope with this complicated disease is difficult. Worn down from the past few years of dealing with chronic pain from a disease that is not always fully understood or accepted by medical professionals has left me overweight, tired and constantly asking myself if this is really something I can take for the next 30 years, when presumably I will hit menopause and my life will finally be free of Endometriosis... I struggle daily with how this disease has changed my life in EVERY possible way. Before Endo or B.E. as I prefer to say, I was a fit, active, healthy, social woman. I would run 5 to 6 times a week. I met up with friends to play squash on my lunch breaks. I enjoyed sex... Flash forward 3 1/2 years and even I don't recognize me. 80lbs heavier I feel so disconnected with my former B.E. self that it makes me want to cry or scream. Sometimes when I'm suffering horribly, curled up in the fetal position with my heat bag, looking for more ibuprofen/acetaminophen, I wonder if perhaps I am being punished for something. This after all isn't really living is it? I'm just trying to cope. Deal with. Get through.
Perhaps the most difficult part is feeling like I've let my husband down. I'm certainly not the woman he met and fell in love with. I get frustrated because I feel like he can't understand the kind of pain I'm in or just how much energy it takes me to get through my day. I work more than full-time at a demanding job. I feel like I am not the wife I think he deserves. I'm not as fun and carefree or social as I used to me. Most days, just putting on underwear or shoes, or getting into the car are so painful I feel like I should be put down. I'm embarrassed because of the extra weight I've put on. This disease is debilitating in more than just the physical way. Mentally and emotionally I am exhausted as well.
My history:
The same year I was diagnosed with Endo I was also diagnosed with early cervical cancer. Also, despite being on the pill I got pregnant. I was bleeding erratically and having a lot more cramps than usual. My husband and I were planning our wedding at the time. In light of the surgery I required to remove the cancer, I was advised to have a D&C (a therapeutic abortion). I was three months pregnant at the time. Over the course of only 3 months I had surgery to remove the cancer (LEEP), a laparoscophy to address the endo, and an abortion. I was in so much internal pain (let alone emotional pain) following these procedures and bleeding heavily. Because so much had been done in a short amount of time, I had no way of knowing what was the main cause of the pain. I felt so out of touch with my body. About a month after the surgeries, I met with the specialist and he told me that I shouldn't still be in pain. He also said that the only 'cures' for endo are child birth or a hysterectomy. Being told to have a baby after just enduring an abortion was like adding salt to my wounds. I was so worn out both physically and emotionally that I decided I needed a break from all the 'medical attention'...
The problem was I wasn't feeling any better and the pain wasn't getting any better. I was withdrawing further from my friends and family and missing a lot of work. I knew this wasn't something that was just going to go away on its own and I was desperate for help with the pain. I asked my GP to refer me to a new specialist and she did. This time I was told that as a woman I was prone to being emotional and cramps are a normal part of the female condition. He suggested that I work on being happier and that I lose some weight. He never did an internal exam. That was the last time I saw him.
Thoroughly discouraged and starting to question my own sanity- was I really in this much pain? Am I depressed? I decided to once again try and take care of it myself... It wasn't until I picked up a great book 'Endometriosis' by Mary Lou Ballweg and the Endometriosis Association, that I realized the complexity of Endo. More importantly I realized that I wasn't alone (or crazy).
Now I'm on a waiting to see a specialist who has written papers on Endo; I figure she must be good if it takes 9 months to get an appointment with her... I've started doing more research. I've found that a number of my other ailments such as allergies and stomach 'issues' are linked to this complex disease. I'm trying to understand what Endo is. I'm trying to educate those closest to me so that they can understand what I'm living with. I go for bi-weekly visits to my Chiropractor to keep my pelvis and back in shape. I get massage therapy as well. I still have to work on my work/life balance. I tend to work to extremes when I can knowing that at least a week or more a month I am a complete write-off. I've had to cut back on the amount of ibuprofen I take because I am getting too many nose bleeds. Unfortunately I haven't found anything that really helps with the pain but I'll keep trying. I've heard that acupuncture can help so I'm looking for an acupuncturist right now. I can only hope that by doing these things I might find some relief.
My hope is that by writing this blog, I can share my experiences of living with Endometriosis with those close to me as well as other women who may be able to identify with my story. I would also like to use this blog as a means of passing along information that may be helpful to others who are effected either directly or indirectly with this disease.
-N
