Okay friends, I have been debating if I should write about my follow up appointment that I had yesterday in Iowa City regarding the female issues I have been dealing with yet once again. And honestly, it was the PERFECT example of the way things go when you have a rare disease that doctors know so little about. It was so absolutely ridiculous that I figured yes, I will share my experience of knowing what is wrong yet not being able to fix it because I am rare!                          

If you remember, before my crazy back surgeries, I had another surgery that included three different procedures for the female issues I was having that involved a lot of pain and other difficult symptoms. Shortly after though, the symptoms returned, indicating the surgery did not work, however, my back then went out and due to me not being able to walk, that became my priority. Everything else was now at a standstill.

So, during the MRI of my back, they discovered I had a very large cyst and I was referred back to Iowa City. And finally, I made it back for the overdue follow up regarding the failed surgery six months ago along with an ultrasound and to visit with the doctor. 

The ultrasound revealed that my cyst was resolving on its own, but it also indicated that I had several new cysts developing. The technician literally said to me “well, be prepared to experience more of that pain you’ve been having”. I was also informed that they do not get concerned about a cyst until they are a certain size…and my cyst had been twice the size of what they consider to be concerning!! 

I then followed up with the doctor, and in this department, probably my 6th doctor I have had since going there for these issues. Yes my body is unique and yes I am on plavix which can cause undesired side effects. But, I have been diagnosed with unusual scar tissue and endometriosis, even though some doctors feel maybe this issue is really from my fm and not truly endometriosis…but my fm doctors deny that to be the case. I have tried everything from different birth control to ablation and procedures in order to fix my issues yet I continue to have such severe pain that it doubles me over at least once a week. 

A full blown hysterectomy is what I most likely need…even the doctor said this! But in the next breath she said that with my heart and vascular issues, they really don’t want to perform the surgery. So their plan?! Basically try to figure out how to control my pain until I go in to menopause!! Whaaaa?!?! I knew in that moment, this was another problem I was going to have to figure out how to live through the pain. 

But here comes the real kicker!! Next thing I know, due to some symptoms i described and from the testing and exams today, the doctor wants to refer me to a GI specialist…and start me on some type of physical therapy!!!!! OMGoshhhhh! 

Once she left the room to consult with more doctors I let Tim have it! Haha! I could not believe what I had just heard. They know my history with being diagnosed supposedly with endometriosis, and the procedures they did back in May were supposed to be the last resort before doing a hysterectomy! And really….the surgery in May wasn’t much easier anyway so if I can do it once….lets do it one more time and get it right! C’mon ladies…you know the sharp stabbing pain I’m talking about! 

The doctor came back in and began going over instructions with me as well as the referrals she had made. At this point, I was so dumbfounded by everything she had been telling me that I had to clench my teeth until I knew I would be able to speak without busting out in to tears of laughter. I asked if I agreed to see these next specialists and did the testing and it still showed nothing…would they do a hysterectomy if I still had symptoms?! Her response…”we can discuss it at that point”!!! 

I walked out of the room, looked at Tim and said nope, I’m not following through with any of this. What a bunch of crap! All because of my rare disease and vascular junk….they are avoiding the common fix to some of the most painful symptoms I am having. And what in the world with physical therapy??? What does that even mean?!?! Either way, this is where I have to draw the line!! Haha!

Thankfully, the whole conversation was so ridiculous that my frustration didn’t last long and all I could do was laugh! Even now I am laughing and in disbelief. They know the cause, the reason for what is wrong with me but won’t help me because of my dang fibrosing mediastinitis. Instead, I am getting pushed off to a different doctor. 

So there you have it guys! Quite an interesting day and one more thing I will probably be forced to suffer through the pain simply because my body is too complicated for doctors that they are afraid to do anything to me. 

Needless to say, Tim and I have already had a lot of laughs from this…mostly inappropriate jokes that I can’t share! 😂 

But, in a few days I might change my mind and decide to go through the next round of testing with the new GI specialist just to rule out any other possibilities that could be the cause for my symptoms…but we already know the reason!!! !😬😬😬😬 

I know this is a lot of personal information and I hesitated to share. But, I also feel like these are the exact situations we do need to talk about in order for more doctors to realize just how discouraging and frustrating being diagnosed with a rare disease can be. Yes I know I am at high risk but being so rare makes even the smallest things a huge ordeal leading to test after test, specialist to specialist or downright avoidance…the obstacles and challenges are  indescribable. 

And don’t get me wrong, I do appreciate the doctors trying to take their time and evaluate me before jumping in and assuming, but at the same time, I’ve been dealing with so much for so long, and know my own body better than anyone so please doctors, just listen to me! 

Ohhh how true my favorite doctor was when he called me “consistently complicated”. 😉😏