This is a story of frustration, hopelessness and ultimately triumph. It is the story of my battle with endometriosis and adenomyosis.
Simply put, endometriosis is when the lining of the uterus grows in other areas of the body. This can cause a myriad of symptoms; the most common being pelvic pain. I am not a doctor so if you are interested in learning more about endometriosis please start with any of the follow resources.
Right from the beginning, I experienced challenges with my monthly cycle and by the time I was in my early 20’s I was diagnosed with endometriosis. I had two surgeries to help with the removal of adhesions that had formed within my pelvic and lower abdominal cavities. I then used oral contraceptives to further control my symptoms and cycle. I was one of the lucky few, affected by this condition, who had no trouble conceiving. In fact pregnancy helped because through the expansion of the uterus, many adhesions further broke apart and I did not experience my monthly symptoms.
Following the birth of my two daughters I decided I was no longer going to take oral contraceptives and my endometriosis symptoms once again became an ever present annoyance. I was referred to a gynocologist who wanted me to take Danazol. As this was an oral hormone therapy I was reluctant to take it and in the end suffered through each month as I got on with the busy task of being a working mother. Looking back, it is funny what you are able to live with when you are busy raising children.
Fast forward 5 years and by then the symptoms had become unbearable and it was evident I required medical intervention. By this point, I was living by the calendar and in truth I had really only one good week out of four where I was not suffering. All aspects of my life were affected by my symptoms and enough was enough. And so the most frustrating and hopeless point of my life began.
I first started with my family physician who ordered a series of tests. They found evidence of ovarian cysts and fibroids, but little else. I was then referred to a gynocologist. We will call her Dr. M (no point in being sued for slander here)
Dr. M was a complete waste of my time. On the day I went to see her, I was in excruciating pain. I described my history, she did an exam, and in 5 minutes declared I had severe endometriosis. Shocker! I already knew this. She gave me a prescription for three months of Lupron injections and said it would take away all of my pain. She did not explain the nature of the medication or any possible side effects. I asked why she could not do a hysterectomy. I was told that I had to take this medication first before she could decide if I was a candidate for surgery.
Off to the pharmacy I went to have the prescription filled. They were a little taken aback by the prescription and said that first they had to figure out what is was, and then would need to order it in. Oh, and by they way it was $300 an injection! At that point I began to wonder exactly what this medication was. Upon arriving home, I began to research this “magic” medication that was going to take away all of my pain. Again, to avoid a slanderous lawsuit, all I have to say is that I felt in my heart it was not the right medication for me.
I called Dr. M’s office to see if I could arrange another appointment to discuss the prescription. As she was was only at the local clinic once a month, the soonest I could get in was in three months. I asked for the number to Dr. M’s other office. I called this office and was informed they could not help me because I was not a patient of that particular clinic and I could only deal with my local clinic. Upon calling back to the local clinic I asked if there was a way I could be in touch with Dr. M so I could ask some questions and share my concerns about the prescription. I was given Dr. M’s email. I clearly wrote up my questions and concerns and never heard from Dr. M again. In fact the next time I heard from her office was when they wanted $50 to cover the cost of transferring my files to my new doctor. I told them not to waste their time or my money because Dr. M. did nothing for me.
I then went back to my family physician, Dr. V. This was an extremely low point. I was exhuasted, frustrated and living with chronic pain. Bottom line, I hurt all of the time. No more pain free week. I HURT EVERY DAY! Dr. V just couldn’t understand why I wouldn’t take the injections and informed me that no self respecting surgeon would give me a hysterectomy for endometriosis. I had indicated that we were looking into having surgery in the United States. He basically said that was a horrible thing to do. He then went one step further and informed me that I was over-reacting and that endometriosis did not cause chronic pain, but only monthly cyclic pain. I left in tears.
By this time, the only way I was making it through each day was by a cocktail of heavy duty pain killers. What surprised me was how it was never questioned when I called in for another refill. Some days it was all I could do to make it through the school day. I would collapse into bed upon returning home and my eldest daughter would take on the task of preparing the evening meal for our family. My husband was amazing as he was emotionally supporting me, picking up the slack around the house and was the primary parent for our children.
I finally got into another gynaecologist, Dr. B. She listened to what I had to say and took the time to clearly explain the nature of my condition to my husband. She indicated that she could not entertain a hysterectomy until we had tried a few things. I was frustrated, but she came highly recommended to me by a dear friend so I didn’t give up hope. First off she wanted to take me off the progesterone therapy that Dr. V had prescribed. She asked me to take the Danazol. I was frustrated, but did agree to this new hormonal drug therapy. I did not react well to it and in 26 days I was off of it. It took over two months for the resulting symptoms of this medication to resolve themselves. As a result I was put back onto the progesterone, but this time the dosage was doubled.
In the meantime, my husband decided we needed to take matters into our own hands. We paid out $4000 for a membership with a private healthcare facility in Calgary. They had promised they could shorten my wait time for specialists and could broker a surgery for me in the United States. None of these promises came to fruition and once again it seemed our efforts were a complete waste of time and money!
Yes the facility had a number of specialists for me to see, but none of them were the kind of specialists I needed. The dietician was completely stumped when I asked for suggestions of foods that would not trigger my symptoms. I had greater success at my local library. (I recommend to following book – Endometriosis: A key to Healing and Fertility Through Nutrition by Dian Shepperson Mills and Michael Vernon) The kinesiologist was frustrated that I couldn’t complete the physical testing and simply told me I needed to exercise more. She then referred me to the physiotherapist. And by the way, the physiotherapist was not covered in my membership fees and would cost more money. Needless to say, I did not follow through with this. Seriously… exercise more!!!! I couldn’t even walk upright at this point!
I visited the physician they assigned me. Dr. K took my personal history, was surprised by the number of pain prescriptions and did another internal exam. When I returned for my followup I purposely took no pain meds the entire day. I was a wreck by the time I got into see her. Her response was, “I didn’t realize it was so bad. You seemed fine when you were in last time.” I asked for a referral to one of their gynaecologists . Dr. K informed me she wouldn’t give me one as I was already seeing a gynaecologist. She advised me it was a small community and if I kept seeking new referrals I would be labelled as a difficult patient. My response was that I wasn’t a difficult patient, I just had a difficult problem that nobody wanted to deal with! She gave me an injection for the pain, a prescription for a new pain med and that was the last time I ever heard from her again!
In fact the next time I heard from the facility was when they sent me a letter indicating it was time to renew my membership. Needless to say, I cancelled this and was more than happy to tell them EXACTLY why I was not happy with their facility. They even went so far as to offer me 6 months free to give them another try. I refused their offer.
Needless to say, 2011 was truly a dark year and I missed out on many aspects of my life because I was medicated or in bed. I recall a particularly low point when I spent a summer’s day in a drugged stupor sleeping on a beach. We were on our summer vacation and I just wanted to spend time with my husband and girls, but physically all I could do was sleep in the sun tent while they played in the water. My pills and hot pad had become my best friends. Through all of this I became a bit desperate and searched for relief as I spend hundreds of dollars on massage, homeopathic treatments and acupuncture to find some way to lessen my pain. None of it really worked
I pretty much spent the summer of 2011 in a drugged and miserable stupor. The pain was relentless and the double dose of progesterone was turning me into an emotional wreck. Through all of this, I continued to research more about my condition and found the website for Dr. Redwine. He is a specialist in the field of treating endometriosis. My husband and I began to discuss how we could finance what would probably be a $20,000 venture. My parents gave us a bit of money and we decided we would cash in our retirement savings. All I had to do was forward my files so they could be reviewed.
I had a followup appointment scheduled with Dr. B in late September. and I had full intentions of asking her to forward my files to Dr. Redwine but in the end I didn’t need to. Upon review of the fact that I was not responding well to any drug therapy it was evident I had jumped through all of the medical hoops need to actually be a candidate for a hysterectomy.
Within two weeks I had my surgery. I had a complete abdominal hysterectomy that left me with a hip to hip scar and only one ovary. It was confirmed that my uterus had become fused to my bladder, thus the chronic pain of what felt like the worse bladder infection you could imagine. In the process of removing the uterus my bladder tore and I wore a foley catheter for 14 days. The pathology report indicated that I had not only endometriosis, but also adenomyosis.
Adenomyosis is when the lining of the uterus is actually growing into the wall of the uterus. This is a very painful condition and wouldn’t you know it, but the only cure for adenomyosis is a hysterectomy….go figure!
So here I am today, six months since my surgery and I feel FANTASTIC! In fact I was taking fewer pain meds two weeks after my surgery then I was the day before the procedure. I have my life back! I am no longer living by the dates on the calendar. I do not hurt everyday! There is some residual endometriosis left – that is not a surprise as because it is difficult to completely eradicate, but at this point I can deal with it. Right now I am hedging my bets that menopause will happen before it grows back to the point of being an overwhelming nuisance again.
I try not to dwell on this. Right now I’m enjoying my life. The many blessings of my life are the more appreciated because a year ago I was too miserable to notice.
I have the most supportive husband on the planet and I would not have been able to get through this without him. It takes a team to keep a household running and for a long time he fulfilled both of our roles. He held me through my darkest of days, listened to me rant when I was tired and angry, and he loved me through it all. I probably would have curled up into a ball and given up without his love and support.
I have amazing children who understood when mommy was having a bad day. One good friend indicated that I could look at this as a positive thing in that I was teaching my children how to deal with adversity. They did more then they should have over that miserable year. They made dinner, would bring me tea, kept the house clean and even learned how to do laundry. Worst of all I know they worried for me and I was incapable of alleviating their worry. They are amazing young ladies and I love that I can now run and play with them.
I have discovered I am surrounded by amazing and supportive women who kept me sane throughout this journey. They held me while I cried, prayed for me and if I couldn’t get out of the house for a coffee date, they brought the coffee to me. They made meals for my family, brought me flowers just to cheer me up, and drove my children to and from school. They looked after my heart and body when I was too tired and overwhelmed to look after myself. They are my angels on earth and I am forever grateful for them.
2011 is behind me and I have my many blessings and my health but I will never forget how hard I fought for that last part. I did not give up. Perhaps I was a difficult patient but I did not take this adversity laying down. I fought and that is a lesson I will never forget.