Endometriosis

Hey, everyone!

So, the illness I have been battling with is called endometriosis. I want to take some time to discuss it because my guess is that a lot of you may have it and not know that you do. I'm going to talk about my personal journey as I think it may help some of you.

I started my time of the month when I was eleven years old, and for about a year, I had no clue what my mother was talking about when she was talking about menstrual cramps. I thought she was crazy. I did feel bloated, but I had no clue what she was talking about with regards to pain. A year later, I started getting cramps, and they just kept getting worse and worse and worse to the point where I lay on my bed, crying because it hurt so much. I try not to take painkillers because, over time, it does increase your body's resistance to the those drugs, and I want them to be as potent as possible when I actually need them. I figured I could probably deal with the pain without painkillers. Then, for my first few years of high school, I once again had no cramps. I was quite ecstatic about this as I now knew how painful they were. Unfortunately, it was not to last - in my junior year, my cramps came back, and this time, they were at least three times as painful as they were in eighth grade. I felt like someone had taken a knife that was just dull enough to hurt like nothing else to that area and was slowly twisting it into my skin, enjoying my pain. It was horrible. But again, I didn't take painkillers - I thought I was just weak and couldn't deal with it. Even when it became debilitating - I missed classes, almost fainted a few times just by walking, had to be carried some days - I just kept blaming myself. I only took Tylenol if I had to take an exam or something and actually had to concentrate. Even the Tylenol didn't take away all of the pain, but it took the worst of it off to the point where I could train myself to ignore it.

This pattern continued into college, but it just kept getting worse. Every period became an absolute nightmare. By my second semester, I would cry for about six hours straight on the first day because that is how badly it hurt. And by about July/August, that period very quickly began to lengthen to seven, eight, nine, ten hours. And in July, I ended up having to go into Urgent Care because, the day I got my period, I couldn't stop throwing up both food and liquid. By the time I had effectively not drunk anything for a full day, I decided that I should probably seek some medical attention, so I went to Urgent Care. They gave me an anti-nausea medication along with a saline bag, which solved the vomiting problem.

Even with the increased pain, I was still committed to not taking painkillers. I would go to class, make it through lecture by punching myself on my arm or pinching my leg to distract myself from my tummy, go back to my dorm room to cry for a few hours, and then go to another class. I thought if I just managed to train my body to manage the pain, I could learn to live with it eventually without compromising my body's ability to be potent to acetaminophen, naproxin, or ibuprofen when I really needed it. This continued for a few months.

Then came December 2012. Finals week. I had had some other medical problems all through the semester that I don't particularly want to discuss, but they had made me spend the majority of my time in the hospital, trying out treatments and medicines. I now know that it was completely unrelated to what was about to happen, but I didn't know that at the time. However, I was pretty sick of being in the hospital and being continually told that there was nothing wrong with me when I knew that something was wrong.

Unfortunately, my body had other plans besides sitting in peace and letting me study. I got my period in the middle of the night about four days before my first final, so I groaned and tried to go back to sleep. However, a half hour later, I could pinpoint a spot in my right, upper stomach where the pain was so intense that touching that spot made me scream uncontrollably. This was new - this was not in my womb area, this was my stomach area. Of course, my first thought was appendicitis, so I called my friend who had a car, asked her to come over, and then called the nurse's post with my insurance provider. The nurse basically told me to get to the ER as fast as I could and to not eat or drink anything in the meantime.

My friend was very kind, ran me to the hospital, and stayed with me. After a few hours, the doctor came back, told me that I didn't have appendicitis (I groaned - ANOTHER no-answer visit) or a bad gall bladder, and proceeded to do a very, very painful pelvic exam as he thought it may be ovarian cysts. Nothing came up, so he gave me some prescription Vicodin to take with me if the pain ever came back, and he gave me instructions to return to the ER if the pain did come back.

Well, the morning of my first final, the pain came back after disappearing for a few days. I went back to the ER at 2 AM the day of my first final with my very, very kind friend, got put on morphine because I was screaming so much, had a doctor tell me that there was nothing wrong with me (of course, screaming due to pain means that there is nothing wrong... but I was in no state of mind to argue while I was on morphine), and I went back home. I e-mailed my professors, telling them that I would take their final another day because I couldn't think on morphine.

So, another couple of days later, the pain returned, but it had moved to a different area of my stomach. I had been told by the second doctor to go back to the ER if that did happen, so back I went - again with my lovely friend. Three times in one week. Not fun. They did another CT scan (I objected because twice in one week is a really bad idea, but again, I was on morphine, so I was in no state to argue), told me I had a swollen lymph node that was causing all the problems, gave me more prescription Vicodin, and sent me home. The third ER doctor was very nice and wrote a note to my school saying that I was in no condition to do any work for at least a week (thus exempting me from all finals), so my teachers agreed to give me my finals within the first week of the next semester.

After finally managing to get home - my father had to fly to my school just to get me through the airport as I needed a wheelchair - I started going to my team of doctors back home. My primary physician had no idea and my gastroenterologist (throat/stomach specialist, on whom I had been banking all my hopes as my pain had been in my stomach) had no idea. Finally, I visited my naturopath. As you can probably guess by my aversion to painkillers, I am very into natural medicine, and my particular naturopath, in the past, has cured me from twice-yearly sinus infections and has greatly reduced my severe allergic reactions to dust mites and cats. She looked at all the reports, CT scans (and said that the radiologist's diagnosis of a swollen lymph node was, to put it politely, "complete hocum"), x-rays of the last six months. There was a lot to go through, as between my other problems and these ones, I had been to the doctor's office at least fifteen times in a span of four months. Finally, she asked me how bad my period was on a regular basis. I had no idea why she asked, but I mentioned that I thought it had been getting worse and worse over time and that it was very debilitating. She mentioned endometriosis and giardia. I got checked for giardia, which it wasn't, so then I went to see a gynecologist.

After hearing about my horrible periods and my very sharp pain in my stomach, the gynecologist immediately told me that I had endometriosis and that I likely had had it since I started my period. I asked for an in-depth explanation as to what endometriosis was as my naturopath had told me a little bit, but I wanted the full story from a person in the field.

Basically, endometriosis happens when your uterus cells do not just stay in your uterus - they also climb up into other parts of your body, usually on your bladder and gut lining, and they form cysts. Some very unlucky women have endometriosis in their lungs - that must be awful. As a result of those cysts, when you have your period, other parts of your body also start bleeding, which is why the pain is extra bad. Endometriosis is often only thought of and treated when other parts of your body besides your womb area start hurting, when intercourse is painful, or when women find it hard to get pregnant. Apparently about 6-10% of women are actually treated for it, but it is estimated that possibly a lot of the female population does have it - maybe even up to 60-70%, but it is hard to tell because - who goes to a gynecologist for a bad period or even tells their doctor that they are having a bad period? Bad menstrual cramps are not something either you or your doctor think about as being a problem - unless you are my very clever naturopath, who did think about it. To make things even more complicated, some women apparently have very severe endometriosis but never feel any pain, and some women have very slight endometriosis but feel a lot of pain. It depends on the person. As of now, there is no actual cure or even a good way of determining whether or not women have it. The only way to really cure it is a hysterectomy with an ooectomy, which is a pretty drastic, life-changing surgery and not a good option for most women, especially those that want children.

My first question was, "why on earth was this never mentioned in the loads of doctors visits I had gone to or, at the very least, in the ER during my stomach pain after it was confirmed that I didn't have a swollen gall bladder or an about-to-rupture appendix?" The gynecologist said, "who tells a doctor of a bad period? Every girl is told that PMS is awful and feels terrible, so if a girl has an extra-bad period, she has no way of comparing it to other people's periods and thinks that her period pains are just as bad as everybody else's."

When all of this got explained to me, I said, "well, I had two CT scans done of my stomach and pelvic areas - why did this not get caught earlier? Wouldn't the extra cells have shown up there?" My gynecologist said, "unfortunately, no - the cysts are so small that they cannot be seen by any scan imaging technique - CT, MRI, x-rays, and ultrasounds don't catch it. It can only be seen with surgery." I groaned, and I asked about treatment. Then she gave me another blow. "Endometriosis cannot be removed except with a laparoscopy, and even that can be useless as it is often unwise to remove those cells from bladders, abdominal lining, major blood vessels, etc. in case something goes wrong. The only way to treat endometriosis is to assume that you have it based on your symptoms [in other words, it never actually gets confirmed with most people] and then to take birth control to suppress your ovaries. That will make your periods less painful and will mean that the cysts will not continue to get worse."

I was not too happy about this. Birth control for life? Really? I know two girls personally that have been on birth control for medical reasons, and I had heard, and personally observed, the horror stories - weight gain, out-of-control breast growth, nausea, vomiting, headaches - and I was none too eager to start. But it had to be done - even my naturopath said that I needed to take birth control. However, she also gave me an herbal remedy that she said could start to take effect in about six months if I took it regularly - she said that about 60% of her endometriosis patients did respond positively to it and that I may as well try. She told me to take it alongside the birth control and then to go off it for a full month in a couple of months to see if it was taking any effect with the goal of eventually not having to be on birth control.

Right now, I am off birth control. I took it for two months, but it was the reason why I had to leave school for the semester as it meant loads of migraines, vomiting, constant nausea, dizziness, weight gain, mood swings etc. However, as annoying as it was, the birth control did help, thereby confirming that I do have endometriosis - well, as much as it will get confirmed without me having surgery. My periods were almost painless in comparison to the hell I was going through without it. This is my first month off it, and although I was given a different birth control prescription to try in the meantime of a lower dose than the previous one, I decided to go off it for a month to see what effect the herbal remedy was having. I have to admit that I have been really bad about taking the herbal remedy, but even with my forgetfulness, I believe that the remedy is helping a little bit. I gritted my teeth and ignored my Vicodin bottle during this last month, but my period was not nearly as painful as it was in the past. It was still debilitating, but it wasn't making me cry, so progress! I will keep you posted as to whether or not it works over time as I myself am really curious. I will ask my naturopath more with regards to the science of it during my next visit with her and share it with you.

I hope this helps some people with really painful periods. If your periods really are debilitating - and I hate to suggest this because not everybody is like me in their aversion to medicine, but there is some logic to doing this - don't take painkillers for a few months. See if your periods are progressively getting worse. I am so happy that I didn't take painkillers because, otherwise, I may have never figured out what was actually going on with me in the ER, and that pain may have continued without an explanation for years. If your periods are progressively getting worse, go see a gynecologist just in case. Although the birth control did have a lot of unintended consequences for me, most girls seem to be able to take birth control without any major, unwanted side effects, so it is worth a try. Also - if intercourse is painful for you or you're having problems getting pregnant, both have been observed symptoms of endometriosis, so if that is happening to you, ask yourself how bad your periods are and talk to a gynecologist. It may really help you in the long run.

Sorry for the long post. Good luck, and thank you for reading!