Me, Myself and Endometriosis ~ By Adorable Wife

Me, Myself and Endometriosis ~

Living with Endometriosis is not easy. This is often a misdiagnosed and misinformed female problem. It is a disease. It is debilitating. It is also linked to depression. Women afflicted by Endometriosis can suffer much more than the disease in itself. We struggle with activities, work, relationships and day to day chores.

My life this past year has not been mine. Someone has stepped into my body and stolen 'ME'. I started suffering as I hit my late 30's and it got progressively worse over the last few years. I now know that all my pelvic and lower back spasms were due to the fact that my Ovaries, Colon, Bowel and Pouch of Douglas are fused together with extensive Adhesions and Endometriosis. Since being diagnosed a year ago, I had rounds of Doctors, Hospitals, Ultrasound, MRI, one Laparoscopic Op with another any day soon. All this has affected the way I live and feel. Yes, I am depressed. When you can't plan your life, can't confirm outings with friends, can't travel much due to pains or fatigue and guilt...it will get you down. Yes guilt. I find that I am constantly apologizing to everyone for everything including the way I feel. I apologize for being a rubbish friend and wife all the time. All this guilt leads to severe stress. I am on medication all the time for pain relief and recently, depression.

Going through all this myself I can truly say that I am humbled by debilitating conditions either physically or mentally. I know first hand what it is like to be on mood altering drugs and how frustrating it is when you are not in control of things 100%. I cannot just get out of a "Depression Hole" at the flick of a switch. I wish I could! Wouldn't that solve all my problems?! My meds give me vivid dreams daily which leaves me so tired when I wake up. I have so much empathy and comprehension for people afflicted with pain or disease. There is NO cure for Endometriosis. Yes, Surgery can, at best, remove the disease BUT there is no guarantee. Any remaining Endometrial tissue can regrow. Even a Hysterectomy can have no guarantees. In most cases, the symptoms of Endometriosis lessen after menopause because the growths gradually get smaller. For some women, however, this is not the case. Oh what joy!

But it's not all doom and gloom, I am looking forward to my next Laparoscopy and am confident that I will be in good hands. There are only 2 surgeons that can operate on me, one being a bowel specialist in case part of my bowel needs to be excised. Hence, the waiting list is long. I won't know how long or severe mine is until they go in. They are all so kind at the hospital especially Dr. Katie May whom I've been seeing during my repeat courses for Endometriosis Research. Yes, I have volunteered as a research subject. The aim is to identify Bio-Markers in Endometriosis so that this disease can be detected earlier through saliva or urine in much younger women without the need of invasive surgery. This is my small contribution to medical science so it may help countless other women in future generations.

There is always a silver lining to dark clouds, all the women I've talked to who have Endometriosis tell me how their relationships with their partners have strengthened with a deeper bond and understanding. For me, Michael has been brilliant! There are days when he comes home from work and cooks dinner because I physically cannot. Some weekends he does the house chores -- vacuuming, dusting, washing the bathrooms and ironing. But more than the physical aspect, Mike has been my true pillar of strength and emotional support. How can I not cry, you tell me?
In the meantime, I have also connected with a lovely group of ladies whom I have found on Twitter when I "hash tagged" #Endometriosis. My Endosisters are my lifeline in offering me great comfort and support during this difficult time. It's not all 'moan, moan, moan' sessions. We laugh and crack jokes at our own problems and disease. We educate and inform each other with health issues too. In having found them and building firm friendships, it has made me happier. A core group of us then went on to form our own Facebook support page, set up by the lovely Tricia with Crystal, Gem and myself as administrators. We give so much meaning to the term "Endosisters" and our roles to support each other also helps us cope ten fold.

I have changed in so many ways over the past year and some not through choice. I've learned a lot about myself -- what I want out of life and friendships, I am ultra sensitive and get upset when family or friends say certain things without meaning to offend but do. We don't need your sympathy or understanding of this disease, but empathy for how we feel or may not feel on any given day is enough. A friendly cheer is always a BIG welcome, so is a loving smile and hug. By all means do ask us how we are feeling or coping, but also know that there are times we may choose not to tell you how we really are for fear that it would be awkward for you. I tend to spare you from my bowel movements (BM) intense cramps that sees me squat on the floor, my constant bleeding or spotting or describing my psychological mood swings. To explain what I mean with the above I will give you an example.

My Mother-in-law Ruth has always been a lovely woman ever since I met her some 10 years ago. In that time, she has undergone two hip replacements and one growth removed from her colon. As much as we were close we only truly bonded recently through my Endometriosis. I opened myself up to Ruth by depending on her for moral and emotional support. She has been taking me up to the hospital for MRI, medical and one Occupational Heath Therapist appointment. Through all these appointments, Ruth sat in and really knows what is going on. As much as she has learned from it, it has also been an experience for me. I now know what she has gone through with worry, pain, surgeries, recovery and not having a close female companion to rely on as I have in her. One can truly understand and empathise once you have walked a mile in their shoes -- as my Dad always quotes to me. Again, I cannot stress enough how humbling this has been for me.

We aim to beat this...someday. But until then, just accept us the way we are and be patient. Endosisters have found friends dropping by the wayside only because they couldn't understand or lacked the empathy. When we don't keep in touch it is not because we don't want to or don't like you, it is just us having a down time to recharge our bodies, minds and moods. There are days where I need to rest or sleep all day or just to be by myself.

I value the friendships that I have and am touched by those who drop a caring card through the post, text, email, Twitter or Facebook messages to let me know that you are thinking of me and hope that I am ok. Again, I will try my best to get back to you as soon as I can but please be patient. I will get back to where I once was and I am so looking forward to a better 2012. Thank you for reading and understanding.

Always looking on the bright side of life,
Geraldine :-)