About three months before our wedding in 2011, my wife Nicole came to me all choked up and in tears. I asked her what was wrong and she didn't want to tell me. I kept asking what was wrong and finally she told me how she was having very bad cramping. I asked her if that was normal and she quickly responded no adding in that she was in horrible pain too. She still seemed upset so I pressed further and come to find out she was having other issues as well, in which I will leave unmentioned. We were terrified, but all I could do was get dressed and put her in the car and head to the hospital.
The ER doctor looked at us like we were over reacting and that if it her issues continued then we should come back, but he said he didn't feel like it was an emergency. Nicole and I were shocked how quickly he blew us off. She had a gynecological appointment a couple months before all this went down, but never told her doctor how bad the symptoms were. Well the next day, Nicole was doubled over. We called the Gynecologist immediately and they helped us set up an appointment the same day. Upon entering the Doctors office they immediately saw my wife and performed a quick exam, they immediately indicated something was not right but couldn't tell from this type of exam. He asked me why I didn't take my wife to the E.R.!! I told him that we did go to the E.R. but the Dr. blew us off and sent her home. He immediately called over to the E.R. and admitted my wife; luckily our Dr.'s offices are part of a great medical center.
Nicole at this time was admitted and stayed in the hospital as they tried to figure out was wrong, knowing that her severe symptoms were not normal. They did an endoscopy, a colonoscopy, cat-scan, and a battery of other tests trying to figure where the bleeding was coming from, to no avail. So at the end of the week, they discharged her, but scheduled surgery.
So Nicole had laparoscopic surgery, her parents flew down, and we all waited to find out what was causing all these issues. The Dr.'s involved in the surgery were her Gynecologist who is also a surgeon, a Gastro Surgeon, and a General Surgeon. They all wanted to know what could be causing such bleeding, the discomfort they attributed from the blood itself. So when the Dr.'s came out they knew 2 things, there were no tumors and her appendix that was supposed to have been removed years earlier, was still partially there, never fully removed.
However this was not the issue nor the reason for all the problems. Neither were a couple of cysts, but they found ENDOMETRIOSIS. Yup she had massive amounts of endometriosis in and around her lower abdomen, not just around the uterus but everywhere. What was unusual is that it had spread on her bowel, bladder, and other vital organs. So at the time the good news was we knew what was wrong, the bad news was that were some hard decisions to be made.
After surgery the Gynecologist recommended we immediately go on a very powerful birth control that would shut my wife down completely until after our wedding. We would regroup in the fall to make some decisions. The Gynecologist recommended that because of the severity of the endometriosis my wife should really think about having a hysterectomy. It was such a severe case and it was not going to stop spreading without radical treatment and they diagnosed her with Stage 4 Endomitriosis, the most severe.
To tell a 25 year old that she can't have children was devastating to say the least. However, there was still time, time to try a round of fertility treatments and invetro-fertilization before anything else was done. Invetro is very expensive, we sold our spare car, loaned against my car, even put some on credit cards. We did what we had to do to be able to afford the attempt. After meeting with an amazing fertility DR. we found out that not only was my wife suffering from endometriosis, her ovaries were that of a late 40 year old women, with very low follicle counts in both. Another obstacle, but we pushed on, hoping to beat the odds and use her own eggs. The amount of hormones my wife had to take was almost double what they typically would use just to get her body to respond normally. However, a week before Christmas and after weeks of treatments our follicles (eggs) did not fertilize, it didn't work.
What do we do? How do we try again we just did invetro and the wedding right before, it's now a new year and now a new deductible, Nicole can't keep living in pain, so do we go ahead with the hysterectomy or do we try and come up with something else.
After consulting various gynecologists the consensus was to remove as much endometriosis, through surgery; as they could and see how her body responds. None of the Dr.'s felt comfortable taking her uterus if they didn't have to. So they performed surgery removing lesion after lesion off her rectum, bowel, bladder, and other areas. All in all 4 and half hours later they were confident they removed the majority of endometriosis. Now it was time to shut her body down with strong birth control that was supposed to stop the endometriosis from spreading and let her heal without having to worry about anything for a while.
During this time I was promoted at work and we were moving to Texas form Florida where I was taking on a new role, it seemed like a new beginning an opportunity to put the last couple of years behind us and move forward while we recoup not only mentally, but financially.
We happily watched our family and friends have babies and second babies when we still didn't have ours. It was a constant reminder of what we couldn't have and it was not getting any easier. The job great and then it happened, Nicole started to get sick. At first we went just to a minute clinic type thing because it didn't seem too serious of an issue, a little heartburn and some discomfort that sounded to everyone like gas. Well in November the pain was overwhelming and we rushed to the emergency room where they diagnosed her with gallstones, she needed to have her gallbladder out! We were told by the Dr. there are certain hormones in fertility medicine that can contribute in the creation of gallstones. The gallbladder had to come out for her to feel better. We were relieved that it was just the gallbladder.
While the Dr. was in there, he noticed some unusual lesions. Yup, you guessed it the endometriosis had spread again and seemed to be more aggressive than before. The surgeon performing the gallbladder surgery did not attempt to remove any as he was ill prepared for what he saw and the extent of what he saw. I didn't tell Nicole immediately after surgery about what he found as I wanted her to rest and not stress. After a couple of weeks of my wife recovering, I had more bad Christmas news for her and showed her the pictures he took during surgery.
Nicole needed to go back to see her Dr.'s in Orlando, with pictures in hand of her latest surgery. This was not what we had in store for our new beginning. So I continued to work and she flew back to the Doc's. She knew them in Orlando and was comfortable with them. When she came back home from all the Dr.'s appointments we had decide what to do. In order to get her the care she needed we needed to move back to FL, so we would be around friends after the hysterectomy she would now need to have. She was going to need more support than just me this go around. So in January a few months before we were to move back, we flew back to for the final consult and to finalize the surgery dates.
I was called in to the Dr.'s office where Nicole was meeting with her Dr. and they were both smiling. Apparently there was a radical new surgery that her surgeon wanted to try instead of a hysterectomy! The new procedure called Fire Fly was typically used in cancer patients to remove cancerous tissue not visible to the naked eye. It utilized ultraviolet light to expose anomalies in the surrounding tissue so it could be removed leaving only the good tissue behind. In conjunction with the proposed surgery we had to meet with our fertility Dr. who recommended that my wife be put in menopause through chemical hormone injection immediately after the operation. This would allow for her body to heal while shutting her down completely not allowing the endometriosis to come back. We agreed this was the course of action we would take, saving the last bit of hope so as to try invetro again, at a later date.
The Dr.'s were thrilled at the success of the operation, it took nearly six hours of operating but they were confident that they didn't miss any.
Fast Forward to 2015........
Obviously we won't know until we try invetro again whether any of this has worked, but it's worth knowing that we have literally tried everything possible and that my wife endured multiple surgeries over a few years to get where we are today. Over the last few years this has strained not only our daily lives, but also our finances, these were our choices and our decisions, but we feel the right choices were made.
Now we are reaching out to others to help us make a seemingly nightmarish situation a dream come true. With invetro costing so much and with the debt we now have from the last time, we are reaching out to friends and the community to help us try again. For those who can help, we will be forever indebted to you and your generosity. Please help us try again soon as Nicole's symptoms are slowing coming back and other medical concerns have arose. The Dr.'s are confident she can carry, but we will have to use a donor egg. This adds to the typical invetro costs and the total is now around $20,000!!!! We would wait, but that is not an option as her symptoms are returniing. Without your help those costs cannot be met. The hard part is that they need all the money up front!! That's a lot fo money, so we need you and people you know, to donate just a little. Think of it this way, if we can get a 1,000 people to donate $20 each we will be there and on our way. Share with friends, we are forever grateful.
Thank you for your time reading our story and for all your help, we can't do it without you.
John and Nicole
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