Welcome! Welcome! Welcome!

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A little bit about this website: I started this site to chronicle my journey living with Vulvar Lymphangioma along with Poly Cystic Ovarian Syndrome and a few other conditions. I document all the critical visits and events surrounding my chronic conditions. Please read my blog posts for the latest updates. 

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The Beginning: When I noticed something was wrong

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When I was about ten years old  when one day in the shower, I noticed a bump "down there." I didn't do anything about it. I didn't know much about normal development; I was suspicious that it wasn't right but was more scared about getting in trouble, so I did nothing. More began to grow. In high school, health class was when I knew something was wrong. They went over normal development and said everything should be smooth and not bumpy. I was shocked. I didn't know what to do, so I did nothing. They continued to grow and more popped up, they would itch and then burst, and clear fluid would leak out of them. 

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A Visit To The Dr.

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When I was a sophomore in college, I finally got up the nerve to go to the doctor.  He took a look but didn't bother to ask me any questions. He put me on birth control and told me I had warts. They didn't ask if I was sexually active (which I wasn't) or how long they had been there. He said the only way to get rid of them was to freeze them off with liquid nitrogen.  I went to a few appointments for that, but it was excruciating that I stopped going. I was at the point where I'd rather have lived with them than go through the pain. I was so discouraged and didn't know I should have asked for diagnostic testing and a second opinion. I didn't know how to be an advocate for myself yet. 

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I try again...

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A few years after graduation from college, I moved across the country and got the courage to try going to try seeing a new Dr. I went, and she asked questions! I was amazed, she immediately knew something wasn't right, and she did a biopsy. I was ecstatic, I thought we were going to get down to the real problem. But then the biopsy came back as granulated tissue, basically a wart. I was so shocked. I knew in my heart that couldn't be the answer. By then, it was so bad I scheduled surgery to have them removed. After the surgery, I was so happy they were finally gone; bonus, they had sent the skin to pathology and had an actual diagnosis. A very rare one. Vulvar Lymphangioma. Lymphangioma in itself is not rare, but the location as to where it is on me is what makes it so rare.  Soon I was in for another heartbreak; at my 6 week post-op appointment, the bumps had already come back. I was inconsolable. I was sent to an oncologist who performed another surgery, and it came back again at just six weeks post-op. 

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Where I'm Now

I had a lymph mapping MRI done a month ago and just had my follow-up with the lymphatic plastic surgeon. We are making a plan for surgery number three now. We still don't know what is causing the lymphangiomas to grow as no lymphatic malformations were found on the MRI, and the lymph system appeared normal. So there is the possibility that it can come back after this surgery as well. Now beings the waiting game. 

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Surgery #3 

I had my surgery and had the easiest recovery thus far. They took out 9 oz of bad lymph tissue during surgery. the lymphangioma came back about 6 weeks post-op.  So back to square one, I guess of this never-ending battle. 

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Update as of August 6th

Surgery Went well on 7/24! I had an omentectomy and had it grafted into my inferior epigastric artery and the omentum placed in the mons and vulva. Recovery will be about 12 weeks with 6 weeks laying no more than 3o degrees upright. Spent 7 days in the hospital but now recovering at home. 

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