Endometriosis: Another Puzzle Piece

A few days ago, I had a diagnostic laparoscopy and hysteroscopy. They found endometriosis, a uterine polyp and some weird uterine tissue. Our family and friends reaction has been “You just can’t catch a break!” but we believe finding these problems IS a break.

We have suspected endometriosis for years and years as I have had digestive problems and abdominal/pelvic pain forever. A laparoscopy was encouraged by my gastroenterologist years ago but my gynecologist, PCP and surgeon wanted to delay it for good reasons (that whole complicated situation is another blog post).

Dietary changes, physical therapy and Chinese medicine helped but I felt that it was time for the laparoscopy in March 2014. I scheduled the laparoscopy for the end of April 2014 and got time off of work. I was ready! In early April, my husband got a job offer in Austin, Texas and they wanted him to start ASAP. I canceled the surgery to haul ass to Texas.

Over the past two years my cycles have changed. They have always been predictable and crazy painful. The pain hasn’t changed but otherwise they have become completely unpredictable. I complained to my new gynecologist and we found a polyp on an ultrasound. “THIS is definitely causing all of your problems!” she said. Where was that polyp when I went to the emergency room last month???!!!

I had a hysteroscopy and polypectomy in May 2015. I found out the polyp was over 4 cm long and 2 cm wide. My uterus and recognized it as a foreign object and was trying to squeeze it out of me causing contraction-like pains. Also, it bled like crazy 24/7. I felt better almost immediately after it was removed but it didn’t last.

Maybe a month or so after the polypectomy, all my symptoms came back and this time it was worse. I complained to my doctor who put me on progesterone to control my cycle. The progesterone improved my mood and made me gain 10 lbs but my symptoms only got worse.

I complained and complained to my doctor for 5 more months. She had a Dr. Hibbert like quality to her which caused her to laugh as she suggested an IUD and other birth control options. I couldn’t take her or any of those options seriously as long as she was laughing. Finally, I suggested a laparoscopy. I expected her to give me her medical opinion and she just shrugged and said “Sure!”. Well, ok then.

I consider finding endometriosis, another polyp and weird tissue a break because now we know what we are dealing with. These are all pieces of the puzzle that explain why I feel the way I feel. These puzzle pieces are a valuable tool when you have been dismissed by doctors your whole life.

My next steps include:

  • Heal from the surgery (recovery hasn’t been as easy as they make it out to be)
  • Address these issues primarily with Chinese medicine
  • Find a new gynecologist.


Another Sick Day

I have a problem:

I’m on day 4 of this nasty virus and I clearly do not know how to rest.

My lifestyle is all “Achieve! Achieve! Achieve!” and “Get shit done!” and “Mark something off my to-do list!”

I also tend to look for distractions when I don’t feel good. One good thing about working full time was that it distracted me from my pain.

When I first started noticing symptoms of this virus I thought, “A great opportunity to get things done around the house!”

Ugh. I know thats wrong but that didn’t stop me.

As I felt worse and was confined to the couch I thought, “Let’s get some online christmas shopping done!”

I managed to do a little but was so exhausted just from online shopping that I had to take a nap.

You would think that I learned my lesson last time I was this sick when I.could.not.sit.still. But, no.

I am resting much more this time around but I get bored of just sitting here. I hate not moving around. My body gets stiff. I am too exhausted to do any of my self-care and physical therapy exercises. I need to move around but right now my body is saying “no”.


I’m pretty sure the only reason why I’m not cleaning the kitchen right now is because it hurts to move and I only feel better if I put my head down.

So I’m just hanging in there watching Tupac on “Unsolved Mysteries”.

I promise to post again soon. I have lots to catch you up on including:

  • Traveling with pain and chronic illness
  • What I mean when I say “I’m doing good”
  • Updates on my recent doctor’s visits and tests
  • Other chronic illness topics

Ok, thats it. Now my head is killing me and I need to chill out.

Until next time folks!


The Pain Catch 22

I am currently resting because I am in a lot of pain. It’s hard to just sit here because I have so much more to do today. Why am I in pain? Well, its a culmination of the following factors:

  1. I had band rehearsal last night in which I learned new choreography. The moves were more taxing than I anticipated. I am not a dancer – I was at one time, but pain sidelined me. Light choreography is a part of my current band and I love my band so I suck it up (often at my own expense). Besides it was fun.
  2. I am preparing for an out of state wedding. Traveling with pain and illness involves a lot of planning and work (thats a whole other post). I have been on my feet a lot today (more than I’m comfortable with) preparing and packing for my trip and I did not pace myself accordingly.
  3. I did not rest enough after packing. I usually need to elevate my feet after standing for a while and I did not get a chance to do it.
  4. I showered. Showering makes my legs painful, hot and puffy. I usually try to elevate after I shower but I had to run to an appointment.
  5. I ran errands and went shopping after my appointment. I had to buy items for my trip. Shopping is hard on my feet and standing for too long (especially after standing in line at the grocery store) makes my legs painful, hot and puffy – much like showering).

The Catch 22: A bath would help to relieve my pain but my bathtub needs to be cleaned and cleaning the bathtub will just equal more pain. I do not have the energy and pain tolerance right now to clean it. I could take some supplements to help with the pain but they need to be taken with food and that would subsequently involve me getting up on my painful feet to prepare a meal thus causing more pain.

Now, I don’t like to complain but I would like people to understand that life with illness and pain often involves these vicious circles. My husband often helps me to break out of these circles. He does things like: clean the tub/draw me a bath and prepare food for me/bring me supplements but he’s not here right now. He’s not home from work yet because he goes to work late because he helps me with my physical therapy exercises in the morning. Then he stays at work late to make up his time. Another circle!

So I’m just sitting here, thankful for the opportunity to rest and I’m wondering: Is dancing and traveling to an out of state wedding worth it?

Yes. Yes it is.


I did it. I opened up about a very personal and very painful experience over on Literally Darling. I shared my miscarriage story so that the other mothers of unborn angels don’t feel so alone but also to try to bring attention to something that can be prevented.  I am hoping to educate, spread awareness and spur some change. So far I’ve had a very positive response. People have read the article and are planning on bringing the article I link to from the national academy of hypothyroidism to their doctors. I’ve also heard from pregnant women who’s doctors are not adjusting their meds appropriately. They are going to bring the pregnancy guidelines to their doctors too. I’m so happy to be a part of something that is going to create some positive change. Thank you to everyone who has supported this. Here is to protecting all the future babies of hypothyroid mommies!

The Lyme Question

You’ve asked so here is the answer: I am looking in to it.

I receive at least 2 comments a day asking “Have you been tested for Lyme at IGeneX laboratories?” I am starting to think you all work for IGeneX! Or maybe you are all concerned and want to help.

I had been tested for Lyme a few times but only recently learned that much like thyroid disease, the tests are not so accurate and not all doctors are educated on the subject.

Lyme has been on my radar since Avril Lavigne went public with her struggle with the disease. I read about her experience and thought “That sounds like me!”

The chances that I had been bit by a tic is pretty high considering I grew up near the woods in the midwest. During my childhood, we spent many summers riding horses through the forests in Wisconsin and traveling the country camping in an RV.

I contacted the International Lyme and Associated Diseases Society a while back and received referrals to a few Lyme doctors in my area. I plan to see one of their referrals and will update you on the process.

Thank you for your comments and concerns.

The Puzzle

“Don’t take this the wrong way, but you are a puzzle!” my doctor said to me.

I wasn’t offended. I had heard it before.

We sat together for an hour and fifteen minutes discussing my wonky lab values, symptoms, possible causes and solutions. We didn’t get very far.

She finally agreed with me on the mold. I didn’t even have to argue with her about it. She just reviewed my lab results and my symptoms and concluded that I did NOT have full blown CIRS.  Which is frustrating because thats what my instincts have told me since the beginning. I was reluctant to spend so much time waiting for the CIRS labs if it wasn’t the culprit. We both agree that the mold has affected me but we have ruled it out as the main problem.

At times, it felt like she was grasping at straws, suggesting causes that did not seem likely. Instead of ulnar neuritis she rediagnosed me with both tennis elbow and golfer’s elbow – but how? I never even injured myself. I don’t even know what to make of that.

I’m not going to stop seeing her because she is very good. She spends many hours researching every week which is why its so hard to get in to see her. She is the only doctor who knew how to get my Hashimoto’s disease under control. I think she’s up to the challenge that is having me as a patient and I don’t think she will give up on me.

In the meantime, I am not going to rely on her to figure this out. I will continue being my own advocate, fighting and searching for a solution.

The Great Rheumatologist Debate

My track record with Rheumatologists is very poor. They don’t like me and I don’t like them. They have interrupted me, talked over me, and ignored my lab work and my records. My Rheumatologist at Mayo was ADAMANT that I did not have a an autoimmune disease (further testing proved him wrong). During our first visit together, he misdiagnosed me with 3 conditions without doing his due diligence. I knew that he was wrong right off the bat. Despite testing that proved him wrong, he STILL sent a letter to my PCP saying I had these conditions.

Of course, I am not an “easy patient”. I argue and I stick up for myself and I refuse to be sorry about it.

I prepared for my visit with my new Rheumatologist like I was preparing for a debate. I researched and wrote up an argument including evidence to advance my claim and reasoning (Can you tell I majored in Communications?) I rehearsed my speech and acknowledged counter-arguments. I was really anxious considering my history with this specialty.

I showed up with my notes, records, and lab work to my appointment. I took a deep breath as the doctor entered the room. I was ready.

And then… my whole plan went out the window.

I didn’t have to debate because he listened. He ACTUALLY listened to me. He was sympathetic. He made eye contact with me and he listened to my whole spiel.

Then he told me that although its possible that I have some sort of Autoimmune Inflammatory Arthritis (or what he likes to call Undifferentiated or Mixed Connective Tissue Disease), he doesn’t think thats whats going on with me right now – or at least not yet. He explained his reasoning and it made sense to me. It did not seem like he was jumping to conclusions or had his mind made up on me before he walked in the door. He told me to come back if anything flares up or changes and then we will talk. He gave me advice on what to do next and who to talk to.

Even though I did not get a diagnosis, I feel so much better about my struggle because he listened. Because he listened, I don’t feel so helpless. Because he listened to the whole story, reviewed my records and lab work, I am confident that he did his best to help me and I can rule out another autoimmune disease (for now anyway). Because he gave me advice and was compassionate, I feel empowered and I can move forward without confusion.