Surgery for endometriosis excision and going to grad school

I've been absent from this blog for quite some time due to illness and circumstances. Here is what has happened since April:

I had severe chronic migraines starting in April with an unknown cause. They still don't know. I haven't had an MRI yet, and I am on medication to suppress the migraines, which are still an issue. My current health care provider insists that neurology will not see me if my migraines are under control with my current medications, so the MRI is far in the future, despite recommendations from my previous neurologist. At least they are mostly under control. The medication also helps regulate my sleep cycle.

The first medication I was prescribed for migraines, Zonegran/Zonicimide which is related to Topimax, caused severe memory loss and disorientation. My neurologist originally did not think it was the Zonegran, but after a lumbar puncture to eliminate other diagnoses, it was determined that the medication was the cause. However, this took until August, and I feel sometimes as if my brain is still healing from the extended episodic amnesia. 

During that time I also had an exacerbation of endometriosis. It had been getting progressively worse over two years with the inclusion of severe digestive issues. Due to severe bouts of constipation and diarrhea, with painful bowel movements, I began a gluten-free, dairy-free, egg-free, tea/coffee-free diet. I have an allergy to aspirin, salicylates, and sulfites. It's a common combination allergy that causes asthma and polyps in the sinuses. I've had a few asthma attacks over the years, but I have severe chronic sinusitis. The lack of nutritional guidance caused bowel inflammation that resulted in adhesions to my vaginal wall and abdominal wall over the sciatic nerve. I had symptoms that mimicked Multiple Sclerosis. The doctors insist the endometriosis is not involved in this process, but the results of my surgery is that my endometriosis had progressed in the same areas from where it was excised in 2006, and the bowel adhesions were in areas where endometriosis was previously excised.

In summary, endometriosis, bowel adhesions and migraines = a terrible summer spent mostly in bed, in pain, and most of which I don't remember well.

After the surgery, which reduced the bowel complications and removed the endometrial complications (uterine spasms, abnormal heavy periods, chronic pelvic pain), I was able to go to graduate school as planned. I'm in a PhD program for neuroscience.

I'm seeing a progressive nutritionist. I'm making lists of safe and unsafe foods. Shrimp was recently added to the list. I went to dinner with a friend Saturday night, and yesterday I had a migraine. We had shrimp in spring rolls. Shrimp was the only factor which was questionable (all other foods were safe), so it is the most likely cause of the migraine. Apparently migraines and skin sores (which I had over the summer) are signs of severe food allergies. My diet is still gluten, dairy and egg free. (Also, tea, coffee, wine and chocolate free - salicylates)

My doctors still think I might have an autoimmune disease, but there have not been any further tests or diagnoses since I am functional again. Hopefully it will be figured out eventually. Considering that endometriosis has an immunological component and patients commonly have comorbid autoimmune disorders, it is likely that I also have one. ...At least I lost 15-20 pounds since I can't eat junk food anymore (preservatives = bisulfites = unsafe)

Hope you all are faring well!
~Alison

The cyclic autoimmune disease check

Doctors have been convinced since I was 15 that I have an immunological disease, but evidence of one has never been found... until now.

I have neuropathy/paresthesia that is visible on an EMG which is not related to diabetes (because I don't have diabetes) or my back injury/surgery. If you combine that with chronic migraines, weight gain, sinus tachycardia (with no heart problems) and chronic illnesses, you get Hashimotos disease.

Are there other possibilities? Yes. Well see what the blood tests reveal on Wednesday. But every specialist (two neurologists, a cardiologist and years of physicians) have suggested two causes: thyroid + immune system. When you combine the two, you get Hashimotos.

... at least it would answer some questions.

My Spring Break

I've been trying to see a doctor for 3 weeks. On Wed, another chronic migraine started. I had one imitrex left. I took it Wed night and felt less sick on Thursday. I drove 1 hour to the nearest Planned Parenthood to get a refill on Imitrex and birth control. Imitrex is the only medicine I can take for migraines. Tylenol doesn't touch them and I'm allergic to ibuprofen, excedrine, aspirin and all related drugs.

Planned parenthood was closed. Apparently it closes at 330 except Mondays and I couldn't get an appointment or anyone on the phone. The outer door was unlocked, so I went in, praying I would get helped last minute (it was 340) and a nurse kindly told me to come back between 8-12. I told her I live an hour away, I'm having migraines, I have no where else to go and I get off work at 230. She didn't care and refused to help me get a Saturday appointment. She just repeated the walk in information and closed the locked door. So I left, furious and in tears. And as I drove south toward my spring break destination, half of it already lost to a sinus infection and a migraine, it hit me. I was intensely dizzy and agitated. I was hot and had to turn the radio off. So I turned around and headed home. I knew what was coming. The migraine was not gone. It was just hiding behind my last dose of imitrex.

I desperately called the one doctor who might be able to see me. I cried into the answering machine my predicament. And I finally got a response. I could have an appointment. Next Tuesday.

Migraines migraines

I had to take migraine meds Sunday night and last night and tonight. I am cutting all migraine aggravators (cheese, chocolate, dairy, dried fruit) except caffeine, but I am cutting back on caffeine.

Migraine

Yesterday was my first migraine without missing any days of birth control. I missed my first day of work due to a migraine in years.

Physical impact that endometriosis has had on your life

I am starting this blog in conjunction with Blogging for endometriosis.

In December of 2006, I was diagnosed with endometriosis after a laparoscopy. I turned 21 about one week after my surgery. Since then, I have been on multiple hormonal therapies, none of which worked until I went on Nuvaring in 2011. It worked for about 6 months, then it stopped working, so I was put on continuous low-dose birth control. That is no longer working, so my only option now is surgery.

Here are some of the physical effects:

• I have chronic migraines when not on depo-leupron or a successful hormonal therapy. Since my current therapy is no longer effective, I have one migraine a month that lasts for approximately three days. I cannot get out of bed, endure sound or light, or eat when the migraine is at its peak. If I recognize the migraine (as opposed to a stress headache or sinus headache, which I also have), and treat it early, then I can sit like a zombie and watch t.v. until the migraine passes, and manage to eat toast and drink water. But I cannot drive, go to class, or go to work. As my current therapy becomes less and less effective, the migraines will increase until they last for two to three weeks.
• I have chronic pelvic pain. I am on pain medication for another condition, which dulls the pelvic pain, but in the mornings and after meals, I have sharp severe pains. I have to sit quietly or lay down until they pass. I cannot take non-steroidal anti-inflammatories, which treat both inflammatory pelvic pain and migraines, so my treatment options are limited. As my current therapy becomes less effective, the pelvic pain will increase until it is constant.
• I have irregular bleeding. I am recently divorced and have started dating some, but I cannot predict my bleeding patterns, and that interferes with possible dates, not only for the obvious reasons, but also because of the migraines and pelvic pain associated with bleeding.
• I am lactose intolerant. I was not lactose intolerant after my surgery in 2006. I began being lactose intolerant again in 2009 when my endometriosis symptoms began to be more severe. I have other dietary limitations due to the inflammation, including tolerating small amounts of soy or meat proteins. As the inflammation increases, I will be able to eat less and less.
• I am infertile. I have been infertile for two years because of tumors on my ovaries. As I'm sure you can imagine, this also interferes with my ability to date. When I  have my next surgery, I may have a short period of fertility during which I can have children. I am considering harvesting and freezing my eggs, but I can't afford it. I also couldn't afford hiring a surrogate, so I will probably never have my own children. I am 27.