Komplikaetd Truth: Endometriosis, Part II

[Intro]
September and October flew by. I completed wedding plans, finished renovating our new house, moved in, got married and honeymooned in Cancun. It was difficult getting by day to day but I pushed through knowing that I would have relief soon enough. We had purchased our home in November of 2013, and spent an entire year gutting and renovating. On a tight budget, we did mostly everything ourselves. I was right there ripping up carpet and flooring, painting walls, staining cabinets, replacing toilets and sanding everything. With this I exhausted a ton of energy. When I fell ill in August, I wasn't able to do nearly as much in the house so I focused all of my time on getting the wedding organized.

November was spent as an adjusting period, and let me tell you, being a newlywed is hard enough never mind when you throw in a chronic illness that can only be best described as a roller coaster. There were bad days and worse days. It was very difficult for my husband to understand, because almost none of my pain was visible. Most days I was extremely swollen and had finally invested in some maternity pants and over-sized sweaters. Other than that, my symptoms were all internal and otherwise invisible. Endometriosis is actually sometimes called the "invisible illness" and it became very clear why. My husband and family were all very supportive and tried their best to empathize with what I was going through, but I didn't even know how to do that myself.

Surgery was set for December 17th, 2014 and I was doing my best to keep my anxiety at bay. I had only ever been put to sleep for my wisdom tooth extraction, and at the time they gave me some type of pill in the waiting room that made me forget why I was even there. Then I woke up and remembered. I have always had a fear of anesthesia but I had no choice. My GYN at Mass General explained that the number one goal of the laparoscopy was to diagnose endometriosis. If found, she would burn off what she could while in there, and insert the Mirena IUD to help with symptoms, growth and of course birth control. She didn't want me to get the idea that this would be the end of the road, or a cure for all my problems. She wanted me to continue treating my GI issues with food restrictions and managing my IBS symptoms. She also explained that endometriosis and IBS are like cousins; If you have endometriosis, you most likely also have IBS. And when one gets aggravated, the other can too.

[Truth Story]
I had my pre-operative appointments and scheduled my two weeks off from work for recovery (overlapping Christmas and New Years). I went in for surgery in the morning that Wednesday. I can only speak of what I remembered before and after the surgery. I was brought downstairs on the stretcher to what looked like a giant kitchen and dish room (lots of stainless steel and clanking noises down there). I was asked the same questions over and over by the nurses, doctors and anesthesiologist. I was given some relaxers and was talked through the process. I remember getting brought into the Operating room, being put on a table and having my limbs strapped in. I was naked under my gown and suddenly felt very exposed with the amount of people in the room about to see not only my naked skin, but my insides. A nurse put a mask over my nose and mouth and I drifted off.

I woke up with a terrible sore throat from the intubator and very very groggy. I think that was the most frustrating part of the surgery. I was put in a large chair and I can vaguely remember other groggy bodies in chairs beside me. They were big chairs that went down in a row like we were waiting for pedicures (wishful thinking). An older nurse kept telling me to drink my water but I couldn't even keep my eyes open or my head up. I was trying so hard to tell myself to wake up, over and over. Just open your eyes. Just focus on what's in front of you. Just drink your water. Just stay awake. Just shake it off. It seemed impossible. Somehow I was brought into a bay where my husband could come see me. In the room with my husband, I was anxiously waiting for my doctor to come in and give me the verdict. Eventually she arrived and I received confirmation that I had endometriosis. From what she could see, the growth was present underneath my uterus and was minimal. She burned off what she found (looks like tiny red pimples to me), but reminded us that some growth could be microscopic. She also found that my bowel/small intestine had attached itself to my sidewall... so that was fun. Per my request, she took some photos while she was in there. I wanted these to add to my medical record, but in all honesty I also wanted to plaster them all over my old doctors' offices and hospitals who told me I couldn't have endometriosis. Ha!

I honestly don't remember much after that, but what I do remember was getting into the car with a huge maternity pillow wrapped around me so that the bumps of the road wouldn't hurt. Within a couple hours of being home, I was up and walking around and felt surprisingly normal. I was still swollen and had bandages covering my incisions, but I was hungry and had our parents over to see how I was doing.

My scars were so small, just little tiny slits in my lower abdomen, and minor scarring in my naval. I had a few follow-up appointments to confirm everything was healing well. The greatest battle in my recovery was getting used to Mirena. I had read so many reviews online and found that people either love it or absolutely despise it and get it removed within six months. I've experienced both of those feelings. The cramping and mood swings and nausea was not fun, but my doctor pushed me to just get through the first few months so my body could adjust. I did, and so far so good. 

Fast forward again to May 2015. It has officially been six months since surgery. I have adjusted very well to the Mirena, and was starting to feel more normal. I have had a handful of flare ups and swollen days, but some of them are attributed to "cheating" on my diet. I still have some pain during intercourse, but I've learned to work around that. My current struggle is losing weight. Before I "got sick" in August, I was about 140lbs, which was heavier than the summer prior when I was 132. Six weeks after surgery I was a whopping 176lbs. That's 36lbs heavier than my normal weight. And it has been impossible to drop it. I have been altering my diet, and have lost about 6lbs so far. This is going to be a very long and very slow process. I just have to keep reminding myself to be grateful. 

[Today]

As I said it's been six months since surgery. Now I'm not naive to the fact that this will not have been my last laparoscopy. I am well aware that endometriosis will be with me for the rest of my life (or until menopause), and that I will probably have to get "cleaned out" again when I'm ready to get pregnant (if I can get pregnant). However, a week ago I had a relapse. Not sure if that's the right word, but that's what it feels like. I started having this very minor aching pain in my pelvis on the left side. The area of pain was so specific and didn't radiate to my whole abdomen or back like normal cramps would have. I wasn't able to lay on my left side, and woke up the next day swollen and "pregnant". I didn't eat any trigger foods so I knew this wasn't an IBS flare. I had never felt one before, but somehow I had a hunch that this was a cyst. When I first when to the hospital back in August, I had a hemorrhagic (bloody) cyst on my ovary that had dissolved by the time I went to Mass General. I was told this was a normal cyst that can occur during ovulation. I'm not sure if I felt pain from that since it would have been overtaken by the stabbing pain that sent me to the hospital in the first place. This pain was not excruciating, but I felt like there was something in there, like an annoyance. I dealt with the dull pain for a few days, but decided to give my doctor a call on Tuesday just to let her know what was going on. I told her I thought I had a cyst, and I know that I needed to just wait and let it pass, but wanted to run my symptoms by her to make sure I was thinking correctly. She did not want me to wait it out, so on Wednesday I headed to Boston for an ultrasound and pelvic exam. 

In the office, my doctor said she believed my swelling was more GI related and did an internal pelvic exam. She didn't feel anything on either of my ovaries, but I did. There was no pain on my right side, but as soon as she moved to my left side the tears started streaming. She sent me for an internal and external ultrasound. 

I headed back to work and waited hours for her to call with the results. Finally my phone rang. It's very hard to hold back feelings in an open office, but I tried my best. She told me I was right about my feelings and that there was a 3cm cyst found on my left ovary. She explained that they could not be sure if this was a normal hemorrhagic cyst, or something called an endometrioma. Endometriomas are masses/cysts that arise from the growth of endometrial tissue on the ovaries. They are sometimes called "chocolate-cysts" because they are filled with a thick brownish fluid. Unlike hemorrhagic cysts, endometriomas will not burst or dissolve on their own and need to be manually removed. These are considered to be one of  the most serious threats to a woman's reproductive potential and can place women at a higher risk for ovarian cancer. My doctor apologized over again for having to deliver this news, but at the time I was still trying to process everything. She applauded me for being able to distinguish symptoms between the cyst, GI and endometriosis. We scheduled a follow up ultrasound for six weeks later (July 1st) when we would see if the cyst had gone away, or if it was still present, suggesting an endometrioma. After getting off the phone I became overwhelmed and terrified and angry again. I spent the next 15 minutes in the bathroom crying (apologies to my coworkers who heard the crazy girl weeping). I have since calmed down, but I am still angry that I am dealing with this just six months after surgery. I was supposed to be in the clear for at least a few years. In a few weeks, I could potentially be scheduling another surgery. I am grateful for even having a diagnosis and a treatment plan, and I do realize that many women never find relief, but I just want so badly to feel normal again. 

[Tomorrow]

So this is where I'm at right now. My swelling has gone down, but I can still feel the cyst, so I know that today it's still there. I was told that a normal cyst would go away within a couple weeks. Some women experience debilitating pain when a cyst bursts, but I'm trying not to dwell on that. I'm essentially playing an interactive game of Russian Roulette, just waiting to see if this volcano will erupt. 

Komplikaetd Truth: Endometriosis

[Intro]
I have been dying to write about my story with endometriosis. Immediately I started feeling sorry for myself that endometriosis was even considered my story, so I'm not going to call it that. Endometriosis is not my story, my tragedy, my destiny or my history; but it is my truth. My life is in fact way more komplikaetd than just my disease, but I'll start there.

[About the disease]
"En-doe-mee-tree-oh-sis" is a disorder where tissue that normally lines the uterus grows elsewhere such as the ovaries, bowel, pelvic area or even as high up as the lungs. No matter where it grows, the endometrial tissue thickens, breaks down and bleeds with each menstrual cycle. Surrounding tissue can become irritated and cause cysts, inflammation, lesions and adhesions that can bind organs together.

The most heinous factor of endometriosis is that the extent of growth has no correlation with the amount or severity of symptoms. Some women have extreme amounts of endometriosis and never know because they have no symptoms. Others (like me) have severe symptoms with mild growth.

The most commonly reported (and confused) symptom is painful and heavy menstrual cycles, including pelvic, back and lower abdomen pain. Other symptoms include pain during intercourse (during or after), pain with bowel movements or urination, fatigue, diarrhea/constipation, bloating, nausea and infertility.  The symptoms are often confused with PMS (premenstrual syndrome), IBS (irritable bowel syndrome) and PID (pelvic inflammatory disease).

There are minor complications associated with endometriosis, the most frequent (and bothersome) being infertility. 1/3 to 1/2 of women with endometriosis experience struggles getting pregnant. This is because the growth of endometriosis can obstruct the "paths" or tubes needed for pregnancy to occur. Ovarian cancer also develops at higher than expected rates in women with endometriosis, but is still relatively low overall (10-15% of women with ovarian cancer had endometriosis). Lastly there is another type of cancer called "endometrioid adenocarcinoma", which I'm not going to get into because this is mostly specific of post-menopausal women and I am just not there yet!

The exact cause of endometriosis has yet to be determined, although there are many theories. It has been confirmed that the disease is genetic and ends temporarily with pregnancy, and permanently with menopause. This is because there is currently no cure.

I have found that diagnosing endometriosis is very difficult. First, the growth of endometriosis is not detectable with any noninvasive tests such as ultrasounds or MRIs. Second, as I said earlier, symptoms can be commonly confused with other conditions. And lastly, most doctors are not willing to do what it takes to get a diagnosis; which is a laparoscopy. Although an ultrasound or pelvic exam can detect cysts, these can be unrelated to endometriosis. Laparoscopy is the only definitive way to diagnose the condition. This is a basic surgery where a viewing device (laparoscope) is inserted in the naval (belly button). Two or three small incisions are made in the lower abdomen for other tools to poke around (literally), look for implants, and burn or cut them out if found. Recovery from this is fairly quick and simple, but there are some restrictions that can last up to 2 months (no bathing, intercourse, heavy lifting, etc).

[My story truth]
When I was seventeen, I went with my mother to see my gynecologist about my extreme "PMS" symptoms. I was experiencing heavy periods, mood swings (crying for days at a time) and extreme cramping to the point I was missing school. My doctor told me I was suffering from PMDD (premenstrual dysphoric disorder) and prescribed me a birth control pill called Yaz that specialized in treating this condition. I remained on this birth control until I was 25, and it was a life saver!

When I was about twenty-two years old, I began experiencing sporadic sharp pains during intercourse. At the same time, I was suffering from a whole world of gastrointestinal issues that were causing extreme bloating, cramping and nausea. This is essentially when my journey started. During this time, I began seeing a gastroenterologist first locally, then in Boston when the answers I was getting weren't concise. I was tested for Celiac disease (negative) and discovered I had a whole slew of food sensitivities as well as H.Pylori (a bacterial infection of the gut) and SIBO (small intestine bacterial overgrowth). I was treated and cured of both these infections, and began re-vamping my diet.

Next, I visited a new gynecologist that had decent reviews and was closer to home. I explained the pain I had been feeling during intercourse and that it was making it virtually impossible to be intimate because of my fear and hesitation. After a basic pelvic exam, he took me into his office. He asked questions about my family history, medications, etc. Sitting in front of his desk, I noticed a pile of pamphlets with a women gripping her stomach on the front. The title read "Endometriosis". I grabbed one and starting skimming as he was speaking. I briefly read about the symptoms and immediately asked him if I could have whatever this disease was. His response was that more than likely I just needed some more "foreplay" (yes, his words), because "sometimes men like to rush and get right to it without giving you proper lubrication" (yes, also his words). He also explained that I couldn't have endometriosis because I had been taking birth control, which would prevent it.

At twenty-four, I experienced my first migraine, complete with a numb arm, blurred vision and nausea. I visited a neurologist for and began taking a daily preventative prescription. My migraines became manageable, but this will come into play later on!

Fast forward to August of 2014 (still twenty-five years old and about to get married). I had been searching for different birth control options since I was about to get married, but not looking to get pregnant any time soon. I was sick of taking a pill and was wondering if a patch, shot or IUD would be sufficient if my PMDD symptoms had faded over the years. In this time, my Yaz prescription expired without forewarning so I had to wait a couple of weeks for my doctor to approve my next refill and for CVS to have it in stock (whole different story!). In those two weeks, my body basically freaked the **** out.

On August 10th, 2014 (Sunday night), I went to the Emergency Room in excruciating pain. I was unable to sit or bend my body in any way. Originally I thought maybe this is what passing kidney stones felt like. The only way I could describe this pain to the doctors is a dozen knives puncturing my vagina (ouch). I was given three different doses of morphine via IV until the pain finally subsided. My blood tests and urine samples came back normal and I was admitted to do more tests. I went for an internal ultrasound, where I'm pretty sure I scared the heck out of the nurse in the room with all my screams (sorry). During that test, the doctor told me his first instinct was PID. At the time, I had no idea what that was, but he explained "its an STD.. usually occurs when gonorrhea or chlamydia go untreated." Now, me being the naive sheltered young girl that I was, explained to the doctor that this diagnosis was 100% impossible because I was engaged and in a committed relationship! This was followed by a smirk and head shake. If I had panties on I would have jumped off the table and pounded some respect into this tool (again, sorry). Now I understand the symptoms align, but when I tell you there is no way I have PID, I would appreciate if you would look into other potential explanations.

On my second day in the hospital, after reading a ton of articles online and basically giving myself several minor heart-attacks, I decided to ask one of the doctors about endometriosis. Again I was told that there was NO way I could have endometriosis because I was taking birth control. I was discharged from the hospital the next day (Tuesday) and given antibiotics to take for two weeks.

I spent Wednesday at home trying to take it easy, in fear of the stabbing pain coming back. By night time I had noticed something very strange.

The photo on the left was taken the Friday before I went to the hospital. The photo on the right was Wednesday evening.

Of course I started freaking out, but had no idea what could have happened. Maybe a reaction to the antibiotics? It was late at this point so I slept on it (literally) and called one of the doctors that treated me in the hospital first thing in the morning. I tried to explain that I went into the hospital a size 2, and came home looking like I was 8 months pregnant. I was told that the swelling was from all the fluids I was given during my stay and would go down once I finished my antibiotics.

A full week went by before I finally became impatient and made an emergency appointment with that doctor at his office. Not only was I extremely swollen in my abdomen, but I was having trouble breathing and even walking straight, I had no appetite, and I was in a really low state of depression. I went to his office with my list of symptoms written on a post-it note, which he chuckled at. I could not hold back my tears as I read off all these things I had been experiencing and told him once again that I was absolutely positive I do not have PID. His exact response was that my symptoms were exasperated by my anxiety (yes I have been treated for anxiety on and off since my teenage years).

Exasperated by my anxiety? More like exasperated by the crock of sh** you're throwing at me.

I left that office so discouraged and angry. I was at a loss and felt like no one would listen. I continued to take my antibiotics, but went to see my Primary Care Provider the very next day. I told her about the PID diagnosis, the swelling, the other symptoms, and my thoughts about endometriosis. After hearing everything and doing her own exam, she believed my new symptoms were a reaction to the antibiotics I was taking. She prescribed me a different drug that would work the same but be less reactive. I took those for the remainder of the two weeks.

On August 25th, I called out of work, drove two hours and marched (waddled) into the Emergency Room at Mass General Hospital. I checked in explaining that I was experiencing extreme abdominal swelling, trouble breathing, no appetite, etc. I was brought back to a bay, where a friendly nurse took my vitals. I was wearing a strapless maxi dress, as none of my clothes would fit me. Upon entering the bay, the nurse said hello followed by "so I see you're with baby?" Queue the waterworks.

I felt terrible, but I immediately started crying hysterically explaining that that was the problem. I wasn't pregnant, but I didn't know what I was. She wasn't the first to make a comment, but after two weeks of dealing with the questions and strange looks I just couldn't take anymore. She apologized relentlessly and brought in other nurses and doctors. I was there for eight hours. I had more blood work, urine tests and ultrasounds done. I had my medical records released from my gastroenterologist, PCP and my last local ER visit. I wasn't given any medications because they had no idea what to treat. The last doctor came into my room to sit and discuss a care plan with me. She began explaining that this could be a GI flare-up and that I should follow up with my gastroenterologist and test for additional food sensitivities or conditions. I couldn't help but interrupt her and ask about endometriosis. She immediately gave me the same relentless response. "Well you're on birth control." For some reason, something clicked in my head that maybe those two weeks off of birth control caused something to happen. I told her I missed two weeks of my pills because of issues with my prescription. "Oh!" I feel like a light bulb went off, the heavens opened up, and suddenly we were both on the same page.

At this point, she believed endometriosis could be a contributing factor to my symptoms. It was possible that in those two weeks that my body was "untreated", the symptoms flared up. Birth control is the most common treatment for the symptoms of endometriosis and can help to slow the spread of tissue. She referred me to a gynecologist at the hospital.

At my first visit with my new GYN, I felt like I had finally met my guardian angel. I came prepared with a two-page timeline of everything I had been through from PMDD to GI to migraines to PID. I showed her pictures of my bloating and expressed my frustrations about the doctors I had seen previously. Finally I heard the magic words: "clinically, I can say you have endometriosis". Most people shouldn't be excited to have a chronic illness with no cure that will haunt them for the rest of their lives, but at the time I was just happy to have an answer.

She reviewed my medications, and upon hearing about my complex migraines (migraines with "aura" or vision-related) was baffled that I had yet to have a stroke. Seriously. Basically she explained that with my complex migraines, I should not EVER be taking estrogen, which is of course a major ingredient of Yaz. This put me at an extremely high risk for stroke and other complications (I googled it, she was right). She made me stop taking the Yaz immediately and wrote me a new prescription for a progesterone formula (Aygestin). We developed a care plan together. I was set to get married on October 4th, so scheduling surgery before that date was just not feasible. We decided I would continue taking the Aygestin until surgery, when I would have an IUD (Mirena) inserted. Mirena is a progesterone formula that has been found to be very successful in treating and inhibiting the growth of endometriosis. We scheduled surgery for December 17th, 2014.

I left my appointment overwhelmed. I had never had surgery so of course I was terrified. I was enraged at the countless doctors I had seen, who knew about all my medications and never once told me that estrogen could cause such complications with my migraines. I was relieved to know there was a light at the end of the tunnel, even though I didn't know how long that tunnel was. I was also very confused, because I had so much to learn about this new condition.

To Be Continued....