Abdominal Update: "Second" Opinion

I want to provide an update on the status of my abdominal pain, because I feel I glossed over that update a bit in my Mayo Clinic post. I saw a new gynecologist at the recommendation of my pain management doctor. I explained in this post that my pain was not due to scar tissue on my abdominal wall, as he had previously thought. His advice at my follow-up appointment was to go seek another opinion from a gynecologist. As I said at length in my previous post, I was disappointed to start back at square one, but excited at the fresh perspective this new doctor might bring. Although, I should point out that while I am calling this a second opinion, I have actually seen 3 other gynecologists within two practices for this issue. However, their diagnoses/treatment plans were SO wrong, that I choose not to include them when discussing my progress.

Finding a New Gynecologist

My mother (angel that she is) made an appointment at a local gynecologist that had experience in laparoscopic and robotic surgery, and seemed well regarded by her previous patients. I would like to point out at this point that we had already been the surgery route. I have had a large number of surgical procedures for a woman my age, and while we are not against surgery, we don't want to keep opening me up without a game-plan. We hoped that this new doctor, let's call her Dr. R, would provide us with potential non-invasive options, as well as explore diagnoses we had not yet considered.

A Possible Diagnosis

After taking a thorough history, and taking into consideration the diagnoses and procedures I had already explored, she had a potential diagnosis. Dr. R believed I was exhibiting some symptoms of Interstitial Cystitis. This condition is also known as painful bladder syndrome. The obvious symptom I was displaying, was mild-severe pelvic pain. I will say, however, that I do not feel like my pain necessarily revolves around the bladder or urination. Just the same way that I don't feel that my pain increases or decreases based on what I eat, or how much I eat. As always though, symptoms are different for everyone.

source

Treating I.C.

The best part was that the treatment is non-invasive. Physical therapy for your abdomen and pelvic floor (sounds interesting), and a medication with minimal side effects. I tried the medication for about a week- it is supposed to be fast acting- and experienced no changes in my pain. I have an appointment booked for physical therapy, but as with everything in the medical world, there's a waiting list. I'm not too optimistic about the physical therapy since the medication didn't work, but I will give it my best and try to go into it with an open mind.

I can't imagine I will have too many more updates on my abdominal pain before I go to the Mayo Clinic, but I will of course have plenty of other things to write about!

Turn a Negative into a Positive

After leaving yet another appointment with more questions than answers, one could say that it's getting old. Due to the massive amount of pain I'm in, and the lack of improvement from my last procedure, my pain management doctor feels quite certain that my abdominal pain is not coming from the abdominal wall. His advice to my mom and I was basically to start at step 1. To go get second opinions.

Walking out of this appointment, I felt frustrated, exhausted, angry, and honestly, just fed up. I can't believe that after a year of appointments, surgeries, and treatments, my pain is more severe than when it started, and I have no concrete answers. However, I am choosing to look on the bright side. Going to new doctors and starting fresh gives me the chance to reevaluate my condition. To seek out the best specialists, and use their fresh eyes on my stale problem. I hope that they will have new ideas for diagnoses and treatments. They might see something that my other doctors did not, or have an idea for a procedure that my previous doctors did not think of. I want to keep pushing because I refuse to lay down and accept the pain. I will keep searching for answers.

And to end on the highest note, here is a picture of my adorable cat, Brees, cuddling with  a stuffed llama my boyfriend gave me after surgery.

Gemma

A step forward

It's been a long time since I've posted on this blog. Years in fact. I definitely got caught up with life. Finishing my college degree, starting work full-time, going on diability, and then quitting my job due to my deteriorating health. I spent last night in the emergency room, and left with no answers, yet again.

A small health update: I still have a chronic daily headache and chronic migraines. I have a fast heart rate that resulted from my cardiac ablation to cure my heart condition. I suffer from anxiety and depression. And, most debilitating of all, I have persistent left lower quadrant abdominal pain. I have had ruptured ovarian cysts and adhesions that were surgically removed. I've had a laparascopic hysteroscopy, a colonoscopy, and trigger point injections in my abdomen both with and without anesthesia (pro tip- get the anesthesia, they hurt like a mother). I have had this pain periodically since August of 2016, but it became constant after my laparoscopic hysteroscopy in March. I haven't seen improvements with any of the treatments I've tried so far, and it's getting to the point where even walking down the hallway is hard. I'm not really sure where to go from here. 
I have wanted to post here so many times. I read an article recently about perfectionism. How, as perfectionists, many of us can appear lazy because, many times, we won't even attempt a project for fear that it won't live up to our unrealistically high expectations. I definitely relate to this feeling. I am constantly putting things off because I don't want to fail. Tonight is a huge step forward. I am writing this post in an effort to push aside the fears and make a leap into a world that will likely involve some failure. But I find that, as I'm writing this, I'm kinda ok with that. 
I have an appointment with my pain management doctor tomorrow, so I hope to post an update here afterwards with some answers. Fingers crossed!

Progress through Appointments

Today I made some doctors appointments that I feel could provide some good insight into a lot of my issues. I will be seeing a sleep specialist at the beginning of June, who is also a neurologist, due to my sleep schedule being weird. Last night I slept from 12AM -6AM, and then 10AM-12PM, which is odd. My frequent awakenings in the night and trouble falling asleep are some issues I would like to discuss with her. Getting a good night's rest is important even if you aren't in chronic pain, so hopefully this doctor will be able to give me some answers and make my sleep feel more restful.

I am also going back to see the neurologist I saw last summer, whom I really like. He bases all of his treatment plans and advice off of neurological studies, and what the science tells us. He doesn't let his own preconceived notions about a more abstract treatment, such as acupuncture, prevent him from recommending that treatment to a patient. As an aspiring engineer studying math and science, I appreciate this. I also find it important not to dismiss more holistic methods due to my adverse reactions to some medications, which I may discuss in a later blog post. 

My head is getting more painful now and I feel I may be developing a migraine. Off to get a snack and rest! At least I have a little more hope heading into the next few weeks knowing that I have these appointments on the books.

Every morning, my little friend wakes me up. And no, I don't mean my two year old cat. I mean my daily, constant headache. This morning I'm lucky. I don't have a migraine. My pain is at a 4 or 5 and I have tingling and numbness intermittently on the left side of my face.

I've stopped taking the Valproic acid I was prescribed, as the nausea was so bad I spent hours on the floor by the toilet, trying not to throw up. Another unwanted side effect meaning this is yet another medication I couldn't tolerate.

I hate saying that. "Couldn't tolerate X medication". It makes me sound weak or like I have let the pain win. But when I lie in bed day after day, too exhausted to even go to CVS, let alone look for a summer job, I am tempted to say that the pain has won.