I have been suffering with endometriosis for over 20 years. My journey began when I was 15 and in so much pain and I had absolutely no idea why. It was the worst pain id ever felt in my life. My parents took me to so many doctors but they all did the same tests; CAT scans, ultrasounds, MRI, and physical exams. Nothing showed up except for some ovarian cysts. The doctors told my parents I was lying because they couldnt find anything. Of course after hearing that time and time again and no proof my parents listened to the doctors. I know it wasnt their fault for not believing me but it just made my life so much harder. It affected my mental health in so many ways. I had to bail out of things with my family and friends and even they started to wonder what was going on with me. After numerous doctors appointments and emergency room visits I just wanted to give up. What was the point in telling anyone? I looked fine on the outside so I must be fine on the inside.
When I was 19 I found a doctor who would listen to me. I told him all of my symptoms; the stabbing pain, heavy bleeding, horrible cramps and intestinal issues. It was like he knew right away what it was. He said he was pretty sure I had endometriosis. What was endometriosis? Id never even heard that word before. He scheduled me for a laproscopic surgery which is the only way to diagnose endo. Sure enough thats what I had; endometriosis stage 4. How was this possible? Why didnt anyone else think of this or even mention it all of those years I wanted to die?
I did my research. Endo was a thickening of the lineing of the uterus. It affects 1 of every 10 woman yet no doctor on the eastern shore except this one knew anything about it. I was angry. Really angry. I had spent so much trying to convince my parents and doctors I wasnt lying.
After my first surgery he started treating me with Lupron and I somehow got pregnant in 2005 with no intervention. To say I was stunned is an understatement. I always wanted to be a mom but I was told at 15 I would never have kids. My son was born January 6 2006. The doctors said my endo should get better after pregnancy but it didnt it just got worse.
My original gyn sent me to a specialist because my pain was getting worse. I was so excited when I met this doctor. He had ideas and was ready and willing to help me figure out what was going on. He did a test which showed I had pelvic congestion. I was also diagnosed with pelvic floor dysplasia. I spent about 6 years with this doctor. Having more surgeries and taking more medicine than I knew what to do with. However, he wanted to me to something called pelvic floor physical therapy. I did it 2 rounds of it with 2 different therapists. It did not help me and it made me very very uncomfortable. They had just started this and its not like it is now. They didnt use tools to do the therapy and it was horrible to me at least especially because it didnt work. It works for some people but not me. I told him how I felt about it. I had tried it like he asked but I couldnt do it anymore. I knew that I had endo growing back and needed another surgery but he wanted nothing to do with it and basically threatened me that if I didnt do the therapy he would not continue to treat me. So I left. I was heartbroken. This doctor had been so wonderful to me. He helped me figure out other reasons why I felt so awful and I will forever be grateful to him for that but it is unacceptable to threaten someone with treatment. I had tried it like he asked and I just couldnt do it.
I contacted and went to 3 different doctors after that. None knew much about anything I had and they referred me to Shady Grove Fertility to see what my options were because my boyfriend at the time and I knew we wanted to have kids sometime in the near future. I met Dr. McKeeby there and it is on of my angels here on earth. He basically said that the longer we waited the harder it would be to conceive. He said my endo and other pelvic issues were going to make it difficult. My now husband wasnt ready at that exact moment to have a baby so I asked Dr. McKeeby what we should do. He said if his wife was in my position he would send her to Dr. Shobha Sikka.
That is where I met the best doctor on this planet and I will forever be grateful for her. The first time I saw her I told her everything. I told her I knew that I had endo that needed to be removed because it had been about 6 years since my last surgery. I told her how horrible my pain was and what the other doctor had done and said. She agreed I needed surgery to see what was going on. Sure enough I had an orange sized mass of endo that she had to remove. She also found adenomyosis. I did feel better for a little while and Matt and I got married. It was time to go back to Shady Grove and Dr, McKeeby.
I got pregnant in October of 2016 through fertility treatments and we unfortunately lost that baby 9 week later. ( I will make another post about that) We took a break for a few months and I got pregnant again in April of 2017 and our son was born 7 weeks early but thankfully was a fighter and is perfectly healthy now. Unfortunately because of my endo and his delivery that doctors basically said I should not have more children and I had to have a hysterectomy. I was extremely upset because I didnt get to choose to have more children it was chosen for me and it wasnt fair. Endo has taken so much from me and it just feels like it never ends.
Dr. Sikka did my hysterectomy in September of 2019 and im still trying to deal with the feelings of that happening. I also have a blood clotting disorder which prevents me from taking hormones so the endo still grows on the other organs and there really is nothing I can do about it except have surgery every couple of years.
Now the endo has led to so many other health issues. Im hoping this blog will help other woman not feel alone in their journey because there are so many woman who can relate and support them.