I guess my story starts when I was three years old. I was diagnosed with having Vitiligo; a rare skin condition that consists of having patches of skin in various shapes, sizes and locations that have no pigment. For that reason it tends to be more noticeable on people with darker skin.
My dermatologist always told me that I was like Michael Jackson, that’s why he wore the strange looking glove, and eventually chose to bleach the rest of his skin to match. This condition is autoimmune related. It also means that I have to be very careful not to spend too much time in the sun, because there is no pigment in certain areas, that also means there is no natural protection from the sun either.
I have always worn makeup and moisturizer with SPF in it, even in the winter time and I am careful not to tan in the summer time. When I was younger I had a lot of people comment about it and even a few times I was teased about it, but I think it helped shape who I am as a person. From a young age it taught me a lot about being kind to others, and not making fun of people for being different. It took me a long time to be confident despite my sometimes strange looking skin.
Most people don’t even notice it anymore because I am naturally very pale and I often forget about it as well. I studied abroad in Germany in the fall of 2014 and I started seeing giant billboards on the side of buildings with a model named Winnie Harlow who has Vitiligo and I couldn’t believe it. Finally, there was someone in the fashion/beauty world with the same “weird” skin condition that I have, how cool is that?
The next part of my story begins in middle school. I have always had allergies, but sometimes in the summer it can get especially bad. In August, when I was about 13 years old I was playing basketball outside with some of my cousins and when I stopped I couldn’t catch my breath, and nothing was helping. Eventually it passed on its own, and I was okay. It was really frightening and as soon as I could I went to the doctor and was diagnosed with asthma. Most of my cousins had childhood asthma but grew out of it, and unfortunately I seemed to grow into it.
Around that same time I started having my period and missing a lot of school. I would argue with my mom in the mornings; yes I hated getting up early, and sometimes I dreaded going to school because of the normal teenage anxieties. However, I wasn’t making it up.
Although sometimes, I even started questioning myself. Was I making myself sick on purpose somehow? But then on other days there was no mistaking it, there was no way I could have caused the pain I was in.
There were days where I was in pain, bloated and nauseous and the days when I had my period things were even worse. I went to my doctor and asked about my strange periods. He told me to write down the dates of when I got them. My periods only came every three months or so maybe.
It was very unpredictable, but by keeping track of the dates I was able to sort of see a pattern. Usually, my periods came during the most stressful times in my life; during big projects at school or whenever I was overly anxious about what was coming. It was almost like I brought them on myself.
The first day of my period especially, and even the day before my period were absolute hell. I wouldn’t go to school and I had full body aches, cramps, and the heaviest flow imaginable. I would have to use the thickest “overnight” pads I could find until I was brave enough to try tampons, and by then I was using the “super” ones and even then I was still changing them frequently. I usually stayed in bed most of the day with a heating pad and some ibuprofen onboard.
A lot of times that would suffice but other times I was in so much pain I fell asleep and was knocked out for hours. Usually when my mom came home from work I was still in the same spot as when she left. I remember telling her how I felt and neither of us thought too much of it because she had heavy/difficult periods as well. I thought it was all pretty normal except for the fact that my periods were so random.
Finally, after years of struggling I did some research about how birth control could regulate your periods and potentially make them less severe. So, I decided that my doctor was no longer appropriate for me. He was there for the pregnancy and delivery of my brother and I and he was a great childhood doctor but I wanted to see a woman.
So I went to the nurse practitioner in his practice and told her all about my strange periods. She agreed that birth control might be able to help me. She also informed me that since I had asthma for about 5 years, I should have had the dosage of my medicine adjusted, and it never had been. So she was very on top of things and helped me get to where I needed to be. She referred me to an allergy and asthma specialist who I now see every six months. I was her patient for probably three years before she figured it out, but that was still an improvement from the doctor before her.
During those three years my doctors and I believe that I may have passed two cysts on my ovaries. The first time it happened I was at home with my family. My mom found me on the floor in the bathroom. My face was cold and clammy but I was burning up. It was the second time I had ever passed out, only this time was a lot more painful. I was trying everything I could think of to feel better. I took a hot bath, then I had a heating pad turned up on high on my stomach and I was alternating Tylenol and Ibuprofen every two hours. Nothing helped, but eventually it seemed to pass.
The second time I wasn’t going to just deal with it like I had before. I went to the emergency room. I was supposed to have a job interview; I had applied to be a resident advisor at the University of Maine. I walked in and I was in excruciating pain, again I was clammy and cold to the touch but I felt like I was burning up and I was sweating. I looked at the interviewer and said, “Do you think I could reschedule?”
Luckily she could see I was in no condition to be there, and later I ended up getting the job but as soon as I left the interview room I called my friend to drive me to the emergency room. We waited forever, and finally they took me in, noting that I had severe abdominal pain, and they did some tests.
They assumed it was an STD or bacterial vaginosis, but ultimately they said I had a yeast infection and sent me on my way. I made an appointment with a local doctor (because I was away at school I couldn’t see my regular one) so she asked about whether I was sexually active and she also decided that it was probably an STD from the “stabbing pains” I was describing and she was very rude. She gave me a prescription for some antibiotics and sent me on my way.
The next time I went to my regular doctor back home I told her what happened with the emergency room. She said she wanted to do some tests, including a pap smear and a pelvic ultrasound. Nothing came up on either one.
She said, “I don’t want to alarm you or suggest that I know exactly what is going on, but I have some theories. I think you should see a specialist because from what I’m hearing you may have a condition like Endometriosis, or something related. But I think it’s more than just bad periods and because I’m not an expert in that area I want you to see a specialist.”
I was definitely scared and hesitant to go, and I had many questions about what Endometriosis was and what that meant. I had never really heard of the disease before and I wanted to know what I was in for.
Finally I called the doctor that my sister-in-law went to for some other issues that were equally unpleasant. He also helped with the pregnancy of my twin nieces who were born extremely premature. Needless to say, we really trusted him and he was highly sought after. When I finally saw him and explained my years of pain and struggles he promised to help me figure out what was going on. He was very reassuring and helped me to take it one step at a time. He asked about my symptoms and the big indicator (at least from my understanding) was that I had pain both during my period and after. So in order to make sure that was really the case he put me on continuous birth control for three months. After that time was up he got his answer, and we discussed the next steps.
He said that based on my history and all my symptoms he would suggest that the next step in figuring out what was really going on was to have laparoscopic surgery. I got this news in September of 2013, and we scheduled my surgery for about a month later. That whole month was very hard for me, I was a little depressed and concerned that I wouldn’t be able to have kids, because in everything I had read about the disease that was a constant concern. Endometriosis is one of the leading causes of infertility in women. I had actually convinced myself that that was the case, that I would have to tell all of my future boyfriends that I had this unpleasant disease and may not be able to have children some day.
My first surgery was in October of 2013. At the same time I had also been dealing with a herniated disc in my L5 and I was waiting to undergo surgery for that as well; needless to say I was a bit of a mess physically. I managed to stay in school while all of this was happening.
I had surgery for Endometriosis in October and surgery for my herniated disc in December.
Luckily my laparoscopy was done at a very nice hospital with extremely awesome doctors and nurses. I, of course, had to fast before my surgery and the only thing I could do was take my regular inhaler medicine and head into surgery. I had already researched a lot about the surgery because it is not in my nature to do something I haven’t really given a lot of thought to.
I wanted to know the procedure and the risks and how common it was. When I was getting prepared for surgery one of the nurses asked me if I wanted to hear the obligatory list of potential risks and I said nope, I really don’t want to hear it and he said “Good! I don’t like talking about it either. It’s going to be fine!”
I wasn’t as nervous as I thought I was going to be. I had told my closest friends and people I knew who would be suspicious if I didn’t. My parents came with me and took me home after it was over. It seemed to go fairly quickly although I wasn’t exactly in any shape to know what time it was when I got done. My mom said the first question I asked her when I woke up was “Am I going to be able to have babies?” And then I asked her the same question probably five more times before I got home. I was a little ‘loopy’ from the drugs but everything had gone smoothly and I was allowed to go home that same day.
The doctor said he found a little bit of the disease on my right ovary and that he removed it all and checked my other organs and everything looked “pristine.” He said that as of right now, I should still be able to have children, and that my case was actually fairly mild. He was surprised that there was so little disease given how much pain I had been having, but in all my research it seems that there isn’t exactly a pain to disease ratio.
I think the hardest part wasn’t actually having the surgery or telling people, it was everything after that. I felt like the birth control had made me gain so much weight, and I had lost energy. The surgery seemed to “stir things up” and make the pain even worse. I wasn’t the same person at all, it was as if my entire body chemistry had completely changed forever and I was never going to feel like I used to. I was more tired and didn’t have the energy to do a lot of the things I used to. And after the surgery everyone around me was supportive but they assumed that it was over, and that the surgery had magically fixed everything. Nobody understood that it was just the beginning. My doctor said that given the progression of my disease I probably wouldn’t have to have another surgery for four years, and so now I feel like all I can do is wait. Unless my pain worsens or things change dramatically, I will just continue dealing with it and taking my birth control continuously (skipping my periods for three months at a time) until my doctor thinks it’s time to have surgery again.
Currently I’m considering contacting Dr. Robbins, because I really respect and trust my doctor but I just want to make sure I’m doing all that I can.
It just seems crazy to me that this is all there is.
I just have to manage and this is the only treatment available. I don’t want to be on heavy painkillers, I don’t want the toxic Lupron shots that sound like chemotherapy. The side effects from those things sound worse than the disease itself.
I just want to live a more normal life, more like the life I used to live. It just seems like there has to be something else, a better answer. So for now I have been sharing my story with my friends and family every chance I get. Supporting the films that people are trying to make about the disease. Brainstorming ideas about fundraisers and dreaming about having a place for women who suffer from this disease to gather and get support.
It’s really hard to simply accept that this is going to be my life and that I have a long road ahead of me, but sometimes I do forget. I don’t see it as something that holds me back, which I think is good sometimes because I don’t let it get in the way. However, other times I don’t stop to remember that I need to give myself more breaks and be easier on myself. I can’t do everything that everyone else does and still bounce back in the same amount of time, everything takes longer for me. I think this is where the “spoon theory” really makes sense. If I miss a night of sleep or don’t get a full 8 hours I am majorly set back the next day. Or if I want to have a fun night out with people my age, I really struggle to stay awake long enough to make it out, or I spend the entire next day recovering.
If I get sick that is another game entirely, it takes me forever to finally bounce back, everything seems to linger. So I really have to be careful to rest and take breaks, but in this day and age that’s a really hard thing to do if you want to keep moving forward and progressing. I want to be successful but I also want to take care of myself, it’s a really hard thing to balance.
Right now my biggest wish is to start a Maine Endometriosis center, similar to the Cancer Center. It’s a place where you can get support and information and access to resources. They would have exercise classes and family support groups, perhaps even classes for other things like techniques for dealing with the pain and any resulting mental health issues that stem from it. Maybe even classes about dating and marriage and how to be a good partner for someone with this disease, or for those who suffer, how to tell the person you’re dating.
Maybe there would even be cooking classes because I know some women claim to have luck with eating a certain diet, but I tried going gluten-free once and had no luck, and I also tried dairy-free but didn’t see much difference either. Because I think that my pain is more mild compared to some women I decided that I would rather enjoy the things I like to eat, and deal with whatever consequences may follow rather than being miserable on a restrictive diet that maybe helps a little.
I understand that everyone is different and their bodies react differently, so maybe it really does work for some women, but it didn’t seem to work for me. And for the record I usually cook everything at home and pack my own lunches for work, and I eat pretty healthy. Occasionally I treat myself to something less healthy like pizza but not very often.
Ultimately I think that if women and their families had a place to go where people were supportive and informed and not just in a clinical doctor/patient way, that would make everyone’s lives a lot easier.
I also think that it would be incredible if Endometriosis was considered as a disability and women were able to take time off from work when they needed to. It would also be awesome to have 5k events and fundraisers here in Maine for Endometriosis, the closest ones are usually in Massachusetts.
For now, that’s all I have been thinking about.