Tuesday, May 26, 2015

Komplikaetd Truth: Endometriosis, Part II

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. 

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. 

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. 

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