Rare Abdominal Wall Endometriosis

Hello . My name is Tiffany. For starters thank you taking the time to read a personal story. We all have our own story in this life. We also all know without good health, this life is not so pleasent. Im here to Share my sisters story. One that is not easy. I've watched her struggle in pain for 12 years. Doctor appointments after doctor appointments.. Surgery after surgery. Everything seems to just get worse.

This disease has limited her to truly live. Not knowing when the next flare up will be. Isolating herself because she doesn't want to bring others down. She has a heart of gold!

My sister is strong headed and is not one to ask for help. Sharing this story is deep and personal. As a sister I'm so proud to see her reaching out and asking for help. ( its a miracle) Such a big step. I want to see her live the life she deserves.

Let's open up our hearts with love. For this is not easy.

My beautiful sister take it away,

Abdominal Wall Endometriosis is a rare form of Endo that occurs in the muscles of the abdomen. Its occurrence happens to less than 1% of endometriosis sufferers (lucky me). Due to its rarity, it’s difficult to find a surgeon who has dealt with it firsthand.

Here's my backstory:

My name is Trisha. I am married to a very kind man and we have two children, a daughter and a son. My family is my world. I come from a broken family, so every day I'm grateful for the family my husband and I have created. I'm currently pursuing a degree in Elementary Education and I will graduate in one year. I LOVE teaching. I decided to pursue teaching because of the support I received as a kid with a lot of ACES. A few teachers showed me that there are good adults in the world. I want to be there for the kids that need a teacher who understands the struggles they have to go through and pay the kindness I received forward. We are a typical family, we love our dogs, and we like to camp and hike and do anything that involves the outdoors. My biggest fear is that I won't be able to continue through life with my children in the way they deserve.

I have been suffering from Endometriosis for the past 12 years. I started experiencing symptoms shortly after my first c-section. I developed a hard nodule to the left of my cesarean scar. Back then, I only suffered from pain during my monthly cycle. Two years later I became pregnant with my son. During my c-section with him, they were able to remove the 1 cm nodule and confirmed that it was in fact endo.

About 2 years later, I had to have surgery to remove sutures that we left in my uterus from one of my c-sections. Shortly after, I started to suffer from symptoms again. I had a new lump that began to form near my belly button. I chose to deal with the pain for about 5 years before I sought more help. I was rightfully so, weary of surgery. This time I requested a specialist in gynecology and opted for exploratory surgery. This was when they found my endo had caused my uterus to adhere to my abdominal wall and that I had a mass. The doctor recommended a partial hysterectomy and told me they would see what they could do about the lump in my abdomen. I was most concerned about the lump because it was what caused me the most pain. At the time, I was a training triathlete and had a love for weightlifting, but this new lump was stopping me from exercising because of the severity of the pain it caused me. They performed the hysterectomy but did nothing to the mass in my abdominal muscle. At my post-op appointment, the doctor said there was nothing she could do about the mass and that endometriosis is a painful disease and just sent me on my way with a birth control pill to decrease symptoms.

The hysterectomy did absolutely nothing for my pain. I got worse and had a lot of new symptoms such as bloating, digestive issues, rapid heart rate, growing muscle pain in my abdomen, muscle tears, anxiety, and increasing intensifying pain. I assumed the endo must have been spreading throughout my abdomen as well as throughout my bowels. My symptoms prevented me from being able to be the mom I wanted to be and exercising was no longer an option because of the muscle pain I would get if I did so.

Here I am, a little over 3 years post-hysterectomy. My pain is almost unmanageable, so I sought advice from a gynecologist again. My primary care doctor ordered a CT and they have found that my abdominal wall mass is still present and growing. I have new nodules as well and an umbilical hernia to boot. My PCP said the endo is invading and weakening my muscles. I can no longer wait and see what the mass will do because it's growing and spreading. The gynecologist was upfront and said that there is nobody in our region that has dealt with abdominal wall endometriosis. She recommended I start Orlissa for the management of symptoms and seek out a surgeon who has experience with AWE (abdominal wall endometriosis). Because of its rarity, I have to seek out a specialist who is out of network.

My doctor referred me to 2 doctors in New York or one in Texas. I'm doing my research to find the best solution. The cost will be substantial as I live in Idaho and will have to travel out of state and out of network. My hope is to have at least $7,000 raised and saved up so I can cover all the initial costs and travel expenses. My husband is already finding all the extra work he can to help cover the expenses. He already works so hard to make ends meet for us.

I know there are a lot of people out there who need help and I don't know how to set myself apart from them because they probably deserve it just as much as I do. But even if one person reads this and finds it in their heart to help support me on my journey I would be forever grateful.

I'm 31 years old. My kids are 12 and 9. There's so much I want to see them do!