If you are unaware of my struggle with this disease, please read the beginning of my story HERE.
Since my last blog about my journey, I have remained on constant Birth Control yet still have felt pain more so than ever. I felt as if my regular OBGYN, whom I love, gave up on me a little the last time I saw him. I was crying in his office as I normally do and he said the option he saw was hysterectomy. At 38 years old, that couldn’t be my path… it just couldn’t be.
I searched my support groups for answers. Sent my records to multiple Endometriosis specialists in the country. I received a call back from one place, in a 5 minute phone call after just reviewing my records, 1 of the doctors said to me he wanted to perform a presacral neurectomy (PSN) procedure. This is where a nerve is severed to stop transmitting the pain receptors or whatnot. Well, that didn’t seem to sit well with me. This doctor was ready to have me fly down to his office and do the procedure ASAP. All without physically seeing me or asking me what I was looking for. At the end he mentioned that sometimes with this procedure, you lose the ability to feel your bladder or bowel full. Oh wow, yeah “I’m right on top of that, Rose!” I think not! Luckily, Rey was in the car with me and heard the entire conversation and he was shocked by it as well.
I did some more research and decided to send records to another specialist in NY. This time, I got an email back from the doctor himself. It was short but to the point “I read your case. Britney from my office will assist you to see me. I will do my best to help you.” For some reason, this just made me happy. Knowing that this world renowned doctor was going to try his best and read my file in its entirety. So, with that I made my first appointment with him.
Rey doesn’t always go to my doctors appointments with me, but he is always there for my endometriosis specialists’ ones. I am so grateful for that. These appointments are harder sometimes.
In the beginning of April 2016, I had my first appointment. He reviewed my symptoms asked a few questions and did an exam. Since most of his patients come to him from outside the NYC metro areas, he has to act quickly for surgery procedures. Seeing that I am more local, he was relieved he had some time with me to get and MRI with and without contrast and to visit a Colorectal Surgeon just in case the endometriosis has attached to my bowel.
After going for these 2 appointments, I just went back May 4th to review the findings.
The MRI showed that I have a few fibroids, no major endometriomas, my uterus is retroverted and to the left, and that there is a main focus of adenomyosis. While I was diagnosed with adenomyosis in January of 2015 and I did realize the symptoms are very much similar to endometriosis, but my pain was actually coming for the adeno and not the endo.
Here we are again, at the crossroad that I have been at before. The doctor says “Let’s see if we can see if we can find the reported adeno”. In the exam room, the doctor touched on the spot where the adeno is and I almost jumped off the table. 2 solid days later and that pain is still reverberating.
We went back into the doctor’s office, he was pacing, looking at both Rey and myself. “Rey, Amy… the only thing to help you at this point is a hysterectomy” This was as hard for him to say as it was to hear. He wanted to help me, wanted to get me to be pain free as he has helped so many other women. However, with adeno a hysterectomy is really the only way for it to be treated permanently. While there are some new findings for an Osada procedure, that will cut out the affected area and the doctors will rebuild the uterus… well something like that…
So looks like in June I will be giving the ole heave ho to my uterus. Even though it has caused me so much agony and sadness and sorrow and I could go on and on…. I am still attached to it. I still want to not lose a piece of me, a piece of my womanliness. The finality of losing the last hope of ever having my own children. It is not an easy pill to swallow. How could it be…
To avoid medical risks of heart attack, cancer and having to be placed on hormone replacement therapy we will not be removing my ovaries. Oh joy!
So I guess the path you think you should be on, is not always the path provided for you to take. There is a reason for all of this I am sure. A lesson for me to understand. As far as I know, my lesson is to share this experience. So women, like myself, or yourself, or for women in your life that may have this struggle…. Hopeful this will give you a little understanding, a little peak into another person’s life, a little time in someone else’s shoes. My lesson I have taken is to help you, help you help others… and to bring awareness to such a taboo area that has no place being taboo if it negatively impacts the life of the ones you love.
here is my power song that i listen in times like this…
Thank you all for your unwavering support.