Unfortunately, my story is long and kind of drawn out. So I will try to keep it as short and to the point as possible, however it is an emotional story so I cannot promise that it won't go long or a little off track at times. I first started to have female problems around the age of 16. We all get periods and cramps suck, big time, but I began to get severe pain with each cycle. The pain would make it hard to go to school during that time. I was told by everyone (school employees, nurses, doctors, etc.) that the pain was normal and I was making a big deal out of it.
Fast forward about 7 years. I had just had my 2nd miscarriage and my mom and I were talking. She brought up that one of my cousins had just been diagnosed with Endometriosis (referred to as "Endo" from this point on). I did some research and found that almost everything that I was experiencing was on the list of symptoms. I went in to see my OB after the miscarriage and I brought this up to her. I went over all of my symptoms and how long they had been happening. She agreed that that is what it sounded like but the only way to know for sure, with a diagnostic laparoscopy. FINALLY! Someone took what I was saying seriously and wanted to get to the bottom of my pain.
Endo is a condition where the stuff that makes up your uterine lining, it is normally found inside of the uterus and builds up every month to be shed during menstruation, is in places other than inside of your uterus. It will attach to organs, build up during your cycle and then shed as it does on the inside of the uterus. However, when it sheds in places other than the inside of your uterus, your body will create scar tissue and lesions where the shedding takes place. These lesions are "sticky", for lack of a better term, and can begin to get organs to stick to other organs. This can create a multitude of problems. I should clarify, the pain wasn't only severely painful cramps, it also hurt to have BMs and I would have a lot of constant sharp abdominal pains, among other things. I went in and had the procedure, diagnosis: Endo. This was such a relief to have a name for the issue I had lived with for so long. A name and a treatment plan!
We began hormone therapy, which lasted for 6 months and the pain got better. Then the pain came back. More testing was done and I was told I also had ovarian cysts that would flare up and the Endo was making its come back. I had another laparoscopy to help "clean up" all of the lesions and scar tissue the Endo had caused. When I woke up from surgery, I was told the Endo was much worse than they anticipated so they were going to have to go back in doing a laparotomy. This required a 7-8 inch incision across my lower abdomen for them to go in and clean out all of the Endo. I then went through hormone treatment again but suffered a severe reaction and ended up being admitted to the hospital for treatment. The pain is gone for awhile again. Testing is done and it is found that that one of my fallopian tubes was blocked with what appeared to be scar tissue.
Fast forward 4 years living with pain, cysts, etc. and I met my future husband, Steve. We quickly fell for each other. Steve and I had discussed my issues in length because we both wanted children. We decided that we would start to try to get pregnant before getting married due to my Endo. We had not gotten pregnant so we were referred to a fertility specialist and began discussing our options for treatment: IUI vs. IVF.
Around 6 months or so before our wedding, the pain I had been having for years had gotten tremendously worse. It was hard to sleep, eat, use the restroom, have sex, etc. I had an ultrasound done and was told I had a very large cyst on my ovary. A lot of the time cysts will reabsorb into your body, this did not happen. It got more painful as time went on and it was decided they would go in and surgically remove the cyst. Just under 3 months before our wedding day I went in for surgery. I woke up and received terrible news. It wasn't a cyst that they had seen, it was my fallopian tube, not my tube that was blocked but the other one. Due to this, they had to disconnect the tube from my uterus because it would cause "bad" fluid to backflow into my uterus. Our fertility specialist assisted with the surgery; she told us that I had stage 4 Endo and one of the top 10 worst cases she had ever seen in her 20 years of medicine. At this point, Steve and I are told IUI is off of the table and IVF is our only hope at me getting pregnant.
We began our 1st round of IVF 4 months after that surgery, on my 29th birthday. They were able to harvest 6 eggs from me. This is a much lower amount than most. They fertilized all 6 and we were so fortunate that all 6 survived the process and were graded as "A"s as embryos. We started 5 separate rounds of IVF, 2 of which were not completed with a transfer of embryos. We used all 6 embryos in the 3 completed transfers but pregnancy did not occur. The pain was back and something needed to be done. Steve and I talked to our doctor, got a second opinion and were told that a hysterectomy was my only option for treating my condition. We decided that to improve my quality of life, as well as the cost associated with doing IVF again to move forward with having a hysterectomy performed.
Before surgery, I had to have a colonoscopy due to some other issues which revealed that the Endo had invaded my sigmoid colon and had created a blockage. I ended up having an open hysterectomy along with a colon resection. I was in the hospital for a week for recovery.
Steve and I started working on our house to get it ready for the home study that is part of the adoption process. We have been working on it since then. The process is long, expensive, and a roller coaster of emotions. We look forward to completing the process but there are still times when I get down and feel like we will never get there. But I still can't wait to finally hold our son or daughter in my arms.
What was the hardest thing to deal with?
Watching others around me get pregnant with what appeared to be no effort at all. This wasn't always the truth, as you never know someone else's story, but it always felt that way; especially when we were in mid cycle or between cycles.
How did you handle it?
I cried when I felt sad. For a long time, I tried to keep my feelings to myself and not be sad when someone else got pregnant. I did this because I felt bad/guilty that I was sad that they were pregnant. It made me feel really selfish and like a bad person. However, I finally realized that it is ok for me to feel both happy and sad by other's good news and I needed to accept that. Once I accepted it and allowed myself to feel those things, it made a big difference.
What was the best thing you have learned going through your situation?
I have learned so much about infertility and the processes associated with diagnosis as well as treatment. I have been able to use my knowledge and experiences to help others through their own journeys. That has been very rewarding for me.
What was the most hurtful comment that was made to you and how did you handle it or respond?
I have heard so many hurtful things since our journey began. There are the clichés of course: stop trying and it'll happen, don't stress, I have a friend who has the same condition and they got pregnant, etc. I think the worst one, that has been said in multiple ways, "you're lucky you don't have to worry about...", insert something to do with pregnancy: morning sickness, stretch marks, labor pains, etc. I would give ANYTHING to feel the worst pregnancy symptoms. Those things have always hurt the worst.
What was the best piece of advice you received?
Don't worry about what others think about your process. Share as little or as much as YOU want to.
What is the best thing someone did to show their support for you?
My friends put on a fundraiser to help Steve and I raise money for adopting. So many family members and friends helped with it.
Did you have a book, song, or story that helped you through?
I was at work the day we received the negative pregnancy test result from our 2nd IVF cycle. Needless to say, I was crushed. I was lucky enough that I was able to work in an office for the rest of the day so when I unexpectedly burst into tears, it wasn't obvious to those around me. I sat down and turned on Pandora and a song came on that resonated with me at that moment, "Carry On" by Fun. There are 2 other songs that also are a big part of our journey, they either symbolize our feelings or where we are in the process, etc. One of those songs is "Haven't Met You Yet" by Michael Buble. The other song I prefer to keep to myself but I have found music to be very therapeutic.
Tell me about your support system.
Steve has been amazing. He doesn't always understand exactly how I am feeling but is always there no matter what. I have made contact with others who have adopted and they provide so much insight into the process. Our families have also been great.
What are your next steps in your journey? Where are you headed next?
Adoption. My husband, Steve, and I are currently doing everything we can to get ready for that process.
Anything else you would like to share?
My infertility tattoo. The elephant is a baby and elephants symbolize remembrance (plus they are my favorite animal)-it's holding a dandelion blowing in the wind symbolizing our wish for a baby. There are 8 seeds flying away representing my 2 miscarriages & our 6 embryos. I came up with the idea myself and my very good friend Billy brought it to life.
Even though we have been friends for years, LaRhonda's story is one that always sticks in my mind. I have walked beside her through alot of it and it always amazed me how upbeat and positive she was through the whole process overall. She is such a strong woman and I am proud to call her my friend!
I am the reigning Mrs. Wisconsin US Continental 2017 and have also struggled with infertility for the past 3 1/2 years. My husband and I have been married since May 26, 2012.