At 35, I had been experiencing abdominal pain for years. After seeing 5 different doctors, undergoing a battery of medical tests, fighting with my crappy insurance company, having laproscopic surgery, undergoing an MRI I had an answer: a unicornate uterus and “maybe” endometriosis.
In the middle of all this, I told one G.P. about my pain. He shrugged and said “It’s obviously not life threatening since you’ve had it so long.” Then they asked me if I wanted this guy to be my primary physician. Ha!
Other comments I heard: “You’re just stressed.” “You can’t possibly have pain there.” “Your uterus is freakish.” (SO compassionate.)
In the middle of all this, my relationship fell apart. I thought I had found my guy. Finally. Well, not so much. He wanted to be friends as he just “did not have the energy to put into a committed relationship.” When the going gets tough, sometimes the tough get going—right out of your life. And thank goodness he did. He turned out to be a two-timing lying rat.
Fast forward a couple of years later. My pain continued to worsen, and finally in December of 2012 I was in a tremendous amount of pain all the time. I tried Lupron as at that point I was willing to do anything just to lessen the pain. I felt better than I had in years, but the side effects were not so great. But, it did help me realize just how terrible I was feeling. As soon as I came off the Lupron, all my symptoms returned.
Getting my life back
At that point, I felt like radical action had to happen. I was facing losing my quality of life altogether or major surgery. Every doctor I consulted told me my only option was a hysterectomy. However, I had yet to find a doctor that could answer my questions.
Long story short, I found an endometriosis specialist, Dr. Cook, that was a Godsend. If you suffer from endo or pelvic pain, please drop everything and read his book right now. Please. Right meow. I flew to California to have surgery, and thank goodness I did. He took out a ton of endometriosis and scar tissue, removed my appendix, and I had a hysterectomy. It was the only solution as my uterus was tilted 90 degrees, squashing everything on the right side of my body, compressing a nerve, my colon, and my ovary. And endo everywhere. And fibroids in my uterine wall. The only way I was going to be pain free was to have a hysterectomy. And now I have a whole new lease on life, and more energy in my 40s than I ever had in my 30s. Maybe even my 20s. I am so grateful.
Many doctors will recommend a hysterectomy as a fix for endometriosis. THIS IS NOT A CURE, removing your lady parts only means that the endometriosis on your organs will go away. Ablation doesn’t work. Well, it may work for a couple of years, but then it will all come back. I have lots more to say about this. And I will.
Are you going through something similar?
If you are reading and are in pain without knowing why, please don’t lose hope. Most doctors are ill-equiped to deal with endometriosis and mullerian anomolies. I know what it’s like to live with unexplained pain. I know how draining it can be. I was starting to think I was just losing my mind. And, please read this book. Get educated.
You may have to go through several doctors before you find the right one. Many doctors will brush off unexplained pain because it’s tough to diagnose and treat. Some may not take you seriously or follow through. If they don’t, they are not the right doctor! I absolutely cannot stress this enough. If you are suffering from endometriosis please consult an endometriosis specialist that performs excision surgery. If you have a mullerian anomoly, endometriosis is VERY common. Endometriosis is common anyway (about 1 in 8-10 women all over the world).
Lastly, if you live in the U.S. dealing with your health insurance may also be a challenge. If you are having issues, I urge you to contact the insurance commission in your state. They know what your rights are, and can arm you with information.
If you need someone to talk to, feel free to send me an email at UnicornateBlog at gmail dot com.