Saturday, January 3, 2015

Mystery Diagnosis - My Story

 Have you ever seen that show? I think they use to play it on TLC years ago and it was about certain diseases/symptoms that the medical care team could not figure out. Well, I'm one of them.
  Here is where my Mystery Diagnosis starts.
 Shortly after Dominic was born, I would get this slight pain down my left leg that mostly ached in my calf. Within 12 hours from the onset of the pain, I would start my period. Once the flow was "established" the pain would disappear.
 I brought this up to my gyno/OB and his response was that since the uterus is in close proximity to the sciatic nerves, that the cramping of the uterus in preparation of a period was causing it. Made sense to me. And honestly the pain was not severe at all. I almost welcomed it, just because I knew that my period would be the next day. The perfect warning sign!
 As a few years passed, I started to notice the sciatic pain in my left leg (never in my right leg) was starting to get more and more intense. Still maybe a 3/4 on the 0-10 pain scale. I could live with it. 200mg Motrin and that took care of it. Sometimes I would plug in my heating pad and wrap that around my calf for some relief.
 About 18 months ago, I started to realize that I would get the pain 3-4 days before my period would start and wouldn't go away until about a day or two after my period started. So the pain was now lasting about 5 days, and I would have to keep Motrin on hand the entire time. I also started to notice that my lady parts were insanely sore and achy the first few days of my period. And I mean BAD! I felt like I needed Ice packs or something ( I know, WAY to much information). The pain was now radiating down into my heel at times too, making it very painful to walk.
 This is when I decided to do my own research. After looking all over the Internet, typing into Google search "sciatic pain only around period", I discovered something terrifying. Endometriosis. And I had every symptom of it. It hit me like a ton of bricks. The intense pelvic and vaginal pain during menstruation, painful bowel movements around that time of the month (sorry for TMI again), and at times painful intercourse. I was starting to have pain around the time of ovulation as well. And another even more terrifying term; Sciatic Endometriosis. This is where the endometrial lining of the uterus flows into the outside area and can "stick" to the bowels, bladder, ovaries, and sometimes even the sciatic nerves and spinal nerves.



Here is a case study that made me realize that I need to get this checked out.
http://www.ajnr.org/content/16/7/1399.full.pdf

Sciatic endo is extremely rare, but fully believe that this is what I have. The cyclic pain that comes only with the start of menstruation and ends with the cease of menstruation. Over time, the "lesions" of endo tissue get bigger and worse. Without treatment, it was literally destroy bowel, nerves, ovaries etc. That explains why this pain is getting worse and worse. This last cycle was horrible, taking 800mg Motrin and regular Tylenol, and it wasn't even touching it.



 In October of 2014, I finally built up the courage to go see my gyno again. I told him exactly what was going on, and what I thought it was. The only true way to diagnose endo is by a laproscopy surgery, and so I agreed. I needed answers and I wanted to get it figured out asap. We have been trying for baby #3 for some time now, and if this is the cause of me not getting pregnant, I want to fix it ASAP. My physician did tell me that he only finds endo lesions in about 50% of his patients who complain of endo symptoms.
 I had an ultrasound before the surgery, and it showed a perfect uterus and ovaries. My uterus is retroverted or "tipped" (tips back towards my spine, instead of resting on top of my bladder). This I knew, its a variation of normal. I think something like 10-15% of women have this. I have been told that this has no negative impacts on my reproductive health at all.

  I went into surgery at the end of October. I was outpatient and didnt take but an hour. When I came out of surgery this is what I heard.

" Well you don't have endometriosis! It looks beautiful in there and I can tell that you just ovulated."

At first I was relieved, but then again not. Because I had no answers. I felt like maybe people were thinking I have been making up these symptoms. Have I been making them up?! Am I really that bat-shit crazy after all?!?

 But no, I'm not. This pain is very real, its getting worse and this last cycle was horrendous. And I'm still not pregnant. I have dramatically switched my diet to mostly Paleo, and I have been working out a lot, in hopes that this may help me. From more research on my own, the way this stuff is treated is with birth control pills. Which obviously I don't want because I want to have another baby!

  I'm currently educating myself about the endo-diet and I have cut out grains from my diet. I'm also calling and making an appointment Monday with the University of Michigan Endometriosis Team for a second opinion.. I'm hoping for answers, I'm hoping for another baby. This was not in my plans. I have had terrible sadness over the last few weeks that this may rob me of my fertility, and the thought of that rips my heart out.


  Here is an actual episode clip about a women who had Sciatic Endo. Endometriosis is an estrogen driven disease, so it makes sense that the Clomid fertility meds was making it worse. Its so similar to my symptoms. http://www.discoveryfitandhealth.com/tv-shows/mystery-diagnosis/videos/mystery-diagnosis-the-woman-whose-legs-were-killing-her.htm


Here's to answers!

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