[Note: This post was imported from the original blog this site is based on. It is a personal account of my experience and is not very relevant to the current website. I have kept it out of respect to the journey that led me here.]
Before I dive into this entry, I want to share an idea. When you take medication for something, it's sort of like using a sledgehammer to kill a bug. You're going to squash that bug, but in the process, you are going to wreak some serious damage. Medication that is on the market is often there because it does what it's intended to. It has passed rigorous testing, including evaluation of its risks and benefits, and it has met the standards of law for being effective. But they are sledgehammers, and we always risk serious side effects and possible damage. You can also risk missing that bug. You tear up your body trying to solve a problem and you might not even hit it. It is a risk. Unfortunately, I took that risk from Lupon and experienced some serious complications.
Besides medicine, I've been trying some wonderful 'natural' remedies and I have seen a difference. So I'm going to do the only practical thing a woman with a website can do... I'm going to share what's worked so far.
When using natural/homeopathic approaches to deal with diseases such as endometriosis or FCD, one thing to keep in mind is the difference between such treatments and modern medicine. Whereas modern medicine seeks to 'fix' something that is wrong with the body, homeopathic methods view illness simply as an unbalanced body. The goal of such medicine seeks to restore balance. And because it is restoring balance to individual bodies, each body will respond differently. Another important thing is to learn how to discern between tried/tested/peer-reviewed traditional medicines, and those with their primary claim being 'natural' or 'homeopathic'. Homeopathic does not mean it will work. It's a broad name for all sorts of remedies.
What I have done thus far is a little complicated and, to be honest, I have not always been completely steady with all my various treatments. Being committed to a treatment can be difficult when you have a lot of ups and downs. Especially ones that take a while. Sometimes I had to focus on small things like just getting out of the house. But I have tried to keep up with the big picture.
Aside from my surgery (which clearly has had an epic effect on my pain levels), I've been doing various home treatments. The surgery is obviously what made resetting my body possible, but I think it's the other treatments that are keeping it from plummeting again. The home treatments. For example, red raspberry leaf tea has been great for reducing the severity of my periods. The cramping is reduced and even the amount of blood is reduced, which is amazing. Buying the tea in bulk and soaking it in hot water in a strainer is a great method to prepare/drink it.
Here is a list of some other treatment methods I've been using: fish oil, vitamins, swimming, biking, yoga, kava (in limited amounts), all organic fruits/veges, organic dairy. yogi detox tea, and stress reduction activities.
In this past week, I have biked for hours, swam fifty laps, done yoga, relearned to juggle a soccer ball, and worked 30 hours. I am a walking, mobile, recovering individual! Around this time last year, is when I got too ill to get out of bed. An anniversary that I have not been too thrilled about. March 2011 was a horrible time. I had been sick for years, but this was unbearable. When I was in so much pain that even the slightest movement was torture. I'll admit, I still have pain. My menstrual cycles still feel like someone is trying to stab me. But they last only one week (as opposed to month(s)) and that I can still walk around even on the bad days... it is like a personal miracle.
I believe that, more than anything, the small turn around that my life has taken is evidence that you must take an active role in your health. Doctors are amazing guides that can help you figure out what your treatment options are. But it is up to you to decide which best meets your needs.
After Lupron, I will never let a doctor persuade me into a treatment again. Not only did it not work, it was definitely a sledge hammer to my body. A sledge hammer which I willingly took; a desperate action that I sincerely regret. Love your body, do what you can with it, and get to know it. Whether your struggles are endometriosis, gastrointestinal, or any of the other many diseases out there. Figure out what natural and medical treatments will work for YOU. Trust me, I would not be in the condition I am now if I had not.
So every once in a while I find myself in a situation where the best course of action is for me to explain endometriosis to someone. Sometimes this is simply an attempt at raising awareness; several months ago I abandoned my desire for privacy in favor of educating others about what endometriosis was. Although I occasionally still get embarrassed talking about the dysfunctions of my body, it makes me feel good to spread the word. The problem is, there are different situations and different people that call for explaining my disease. Differences in closeness, working level, gender, and appropriateness can complicate things. And there is no one-fits-all explanation.
Here is my attempt to give a list of general-format-explanations. I am sure I will be adding more, I am sure I will get many critiques. And bear in mind that each of these will need adjustment for individual/varied situations. They are really only meant to be one possible 'practice script'--a guideline and nothing more! But please, take a look, and hopefully you can pull out something of value. I want to help other women get of those 'tight fix don't know what to say' moments. Maybe these will help.
The Casual Friend: sometimes, when you are just trying to get to know someone, situations come up that require you to either explain what's happening or look like a dramatic nutter (alright, these are two extremes, but I have found myself in both situations). Unfortunately, when you're just getting to know someone, it is generally not enjoyable to describe the problems of your womanly body in excruciating detail. And, more often than not, you come up against the barrier that this individual knows nothing about anatomy. So here is my basic explanation:
"I have an illness, called endometriosis. You know how normal women have cycles (periods)? Well, that kind of tissue spreads throughout my body, and grows where it shouldn't. It causes a lot of swelling and pain--it sometimes even 'glues' my organs together. The pain and complications makes normal 'woman issues' at least ten fold for me. So if I cancel plans, seem cranky, or just off, please know that I'm trying."
I like this explanation because it does not require a degree in anatomy and tells enough without going into too much detail. It sells a person enough to show trust and value in their friendship, without burdening them with personal issues or divulging more than you're willing to share.
The Boss: Everyone with endometriosis knows that it can interfere with your work life. You have two options--get a doctors note and let your boss/coworkers mind their own business, or tell them everything (not a lot of in-between when your illness affects others in the work place). In all honesty, they have no right/justification in knowing. Every employee has a right to keep their medical history private. I choose to share mine (in the appropriate situations) because it make it easier for me to explain my missing work due to illness, particularly when it is a cyclical absence. I don't feel threatened by sharing it and I have worked in environments where sharing my endometriosis knowledge with others is helpful. Here's what I generally say:
"I'm not sure if you know what endometriosis is, but it's an illness I have. Due to endometriosis, I have problems with migrating tissue, tumors, cysts, and extreme pain. I work very hard to keep this from interfering with my life. But sometimes, I have no choice. When I have flares, I have two options--I can either come into work on prescribed pain medications from my doctor, or I can stay in bed. If the pain is minor enough, I can take safe enough medications to have it not interfere with work. If the pain is severe though, it would be best that I do not come in. The disease is worse for some than others, so if you need a doctor's note confirming that I have a disruptive case, please let me know. I hope you will be understanding and cooperative in helping me continue work despite this illness."
I like this explanation because it is professional. It focuses minimally on the personal implications and mechanisms of the disease, and primarily focuses on the possible interference it has on work. I think it helps maintain some privacy as well. But remember this--you are never obligated to disclose your personal medical history to your boss or coworkers. You can get a note from a doctor and talk to them about how to maintain privacy without requiring a doctor's visit note every flare.
Dating: When starting a new relationship and you are getting know that person, it will probably, at some point in that relationship, come up that you have endometriosis. I'm not proposing sitting down on the first date and pulling out your medical chart. But I do suggest that if the relationship starts becoming more serious, it probably something you should share. Aside from the possibility of infertility (a difficult subject at best), your potential loved one should know that there will be certain times where you will be struggling. A steady relationship implies trust and a mutual ability to count on one another--it seems fair to give that person a chance to be there for you. And, if you choose to begin a sexual relationship, they should know that you will sometimes be unable to perform certain acts of intamcy,
"I'm not sure if you have noticed, but sometimes I don't feel very well. I have an illness called endometriosis. About 1 in 10 women have it, but some have worse symptoms than others. It messes with my reproductive organs. That tissue called uterine lining, what most women shed on their cycle, mine spreads through my body. It grows in little colonies and causes inflammation. The growths can create scar tissue, bind organs together, and when it sheds inside me it has nowhere to go, and it can be really painful. And that pain can make me a little irritable. There are some complications with the disease that can affect intimacy and maybe even fertility. But I am telling you this because I care for you and want to make this work. I hope we can be open and honest about these complications and work past them.".
So, obviously, this explanation will be the most personal and is never directly mappable onto anyone's personal experience. It gives a suggested outline of points to cover. Primarily, it explains how the illness affects you personally and how it may affect the relationship. It also explains that you want to work with that person to overcome those complications. That way you can let your boyfriend/girlfriend know that your issues exist; it puts them on the table, and makes them aware. My advice is, no matter what stage of the relationship you introduce this information at, be sure it is appropriate for that stage, the person, and that you are willing to talk about it (and make it clear to your partner that they can ask questions). Also, you do not have to make talking about infertility the same talk as 'will we ever have babies'. Those are two heavy subjects, and the second will likely come later in the relationship than the talk about endometriosis. If your partner has concerns though, there is nothing wrong with talking about them.
Family Members: I personally think this can be the hardest group to explain this disease too. These are often people who have known you most of your life--they've seen you go through many life experiences, ups and downs, and they often assume they know you well enough to understand what you are going through at any time. Unfortunately, this makes them a particularly difficult party to explain endometriosis too. Simply because, not only is it hard for them to envision something really awful happening to someone they love, but people often have a preconceived notion of already understanding their family members completely. Teaching them something new about yourself can be difficult--they already have a well established map of you in their heads (and this is true for me as much as anyone else). So here's my attempt,
"I want you to try and understand what Endometriosis is. Please look up some information on it when you have some time. Instead of having a normal period, my uterine lining is migrating through my body. It is shedding inflammatory chemicals (i.e., chemical pain), creating painful scar tissue, and can even glue my organs together, so they stick and 'tug' on my insides. It can also make me extremely moody and even depressed. I don't like how it affects me or my relationships with people. I haven't always been sick, but I am now. I have to try a lot of difficult treatments and surgeries to feel better. It is a spectrum disease, and some women might have mild endometriosis, but that is not the case for me. My life has been seriously impacted and changed by this disease. I know it's hard to imagine a family member in so much pain, but I promise it's the truth. It would really make me feel better if everyone could understand that I feel very ill and that I am not faking or exaggerating. Because it would really help to feel your support and to feel like you are on my team.".
This explanation not only points out the basic symptoms of endometriosis (in a little more familiarity and detail), but it also references how it may affect your interpersonal relationships, without placing blame on the listening party. It's never good to accuse or label others--it makes them defensive and feel disrespected. By keeping the explanation focused on yourself and your struggles with the disease, it frees them up to listen in a respectful manner and gives them a chance to be understanding. In relation to this, it is important that you give them an opportunity to be supportive, even if they have not in the past. If you are attempting to reach out to them and recognize something different about you, you owe them the same courtesy. Try to be calm and patient and hope for the best. And if they choose to disregard your attempt to include them, try your best to stay focused and remind yourself that you cannot control others.
I hope there is a viable and helpful pattern in all these explanations. They give a basic and non-medical explanation of what endometriosis is and helps identify the prospective affects the disease will have on said relationships. It's very basic, so please don't interpret this as an 'end-all guide'. But hopefully it will help. If anyone has personal suggestions/stories/hints to add, I would love to hear them. Thank you for reading!
There have been a lot of flurries going on in the political and media spheres lately. Whether it's a certain media icon throwing around the word "slut", angry back and forth between religious and political leaders, or personal outrages over the whole debacle, there seems to be a lot of tension over the subject of birth control. And the flurries have certainly stirred up a lot of truth, myth, stigma, ignorance, etc., etc., that goes hand in hand with the medication since it's inception.
To start, let me make it clear that I am pairing my opinions with facts, so you will be getting a mix of both. Some might not like what I have written. Just please, read what I have to say, and I hope it will factor into your own feelings about all of this.
Birth control is not a simple contraceptive. It is not the female condom (that would be the diaphragm). There are flaws in many arguments, on both sides, have reduced this tiny pill into a symbol of the debate on sexual freedoms. To the point of blocking any discussion about the medical purposes 'The Pill' serves. While people are fighting back and forth and tackling the issue from a no-win/no-win angle, the heated emotions seem to have drowned out real information. And while I could get into my personal feelings on contraceptives, the social, individual, and fiscal benefits of birth control, or the issue of manipulating health coverage due to personal beliefs, or the role of gender in the debate, I will avoid discussing those arguments here. They are more than sufficiently covered elsewhere. In volumes. But there is a serious lack of discussion on how birth control acts as an important mediation for many.
Birth control is NOT a condom, it has critical medical applications and could benefit from renaming. Because while it is certainly useful as a form of birth control, it has far reaching effects on the body and has impacts (positive and negative) beyond a contraceptive. Birth control is used to treat hormonal dysfunction, irregularity, and diseases, and it is a cheap preventive for associated complications. Early treatment with contraceptives can help prevent later infertility and certain cancers. It is a MEDICINE. It is not a CONDOM.
Birth control pills are used to treat a variety of medical problems and come in a variety of forms. Different forms work differently for different people. Variety matters. Although birth control does help prevent unwanted pregnancy, from an anatomical standpoint, that consequence is very much a side effect of extensive bodily changes. It is not simply stopping pregnancy--it is a massive overall of hormones that affect the entire body.
Two well known hormonal diseases, which are almost always treated with birth control, are endometriosis and polycystic ovary syndrome (PCOS). Both these diseases can be horrendously painful, disabling, emotional roller coasters that also often involve cyclical pain. Although birth control is not a cure for these diseases, it certainly makes their symptoms more tolerable. Before finding the right birth control, my period lasted months, and I usually only got a few days in-between. Birth control is not only used for serious diseases, but also for other complications of menstrual cycles. These include (but are not limited to): heavy/painful periods, PMDD, period related anemia, PMS, and even acne. These diseases and problems often respond well to birth control and help maintain a more hormonally balanced body (which is a miracle when you suffer from hormone disease).
Additionally, as I mentioned previously, birth controls come in a variety of forms. These vary from pills, to patches, to long-term uterine inserts. Even the pills have a wide range (estrogen, progesterone, low-estrogen, etc.). When using a method of birth control for pregnancy prevention, it mostly depends on finding one that sits well with one's body and does not produce negative side-effects. However, when finding one to treat a female hormonal disruption/disease, it is much more complicated. It's not a matter of finding one that doesn't make you sick--it's a matter of finding that one treatment that can save you from agony. I personally have tried nine fifteen different methods of birth control. I did not use any of these as a contraceptive. I was trying to find relief from month long periods, tumors, cysts, and knee numbing cramps/vomiting/fainting that kept me in bed for days. I'm hoping my current one works.
Lately, a common argument I have heard is that insurances do not cover all medications and that we cannot expect such a business to cover everything. This is true. Some medications that are especially expensive are not covered, or are only partially covered, by insurers. The issues of medical expense and coverage are significant problems for many. However, continuing this logical argument, let me poke some holes in it. First off, birth control is a low-cost medication compared to many other auto-immune disease treatments. When I first got diagnosed with IBD, I couldn't help but draw parallels between it and endometriosis. Both are incredibly painful, impair bodily function, can cause life threatening inflammation, sometimes necessitate partial or complete removal organs, and both are controlled/partially controlled by daily doses of medication. Both were covered by my insurance luckily (to the extent of a percentage copay), but whereas my birth control could cost fro $10-$150 a month, my IBD medication could cost over $1200 a month. If my insurer had to pick one of those two to drop for business reasons, I'm sure it's pretty clear which one would go.
But okay, say that argument is flawed. Say that it's impossible to compare different people with different diseases with different severities. Let's say that it is immoral and wrong to say which diseases should and should not be covered (this is my personal belief, but i know it's not a fiscal one). So, talking fiscally, let's look at the difference in costs between controlling endometriosis and dealing with severe complications after the fact. Like I said, birth control can cost $10-$150 a month for me. That is a significant chunk of change. But, let's talk about just one of my treatments: Lupron. I had three shots of Lupron, a chemo-class drug to deal with fibroid tumors and deep-tissue endometriosis (a result of my foolish decision to listen to a pharmacist about temporarily stopping birth control). Each one of these shots cost my insurance $1,500. I had three shots. For one round of treatment. Let's not even get into surgical expenses, ultrasounds, and secondary treatments I've racked up this year. If a woman is being denied birth control for treating a disease for fiscal reasons... doesn't seem very economical to me.
However, let us not forget the fundamental issue that has really dragged this out into recent media. Catholic insurance providers believe that the government has violated the Separation of Church and State. The attempt of the state to force all insurers into covering birth control has really caused a division between political and religious leaders. I understand why--I'm close with a number of Catholics and try to be sensitive to the beliefs of all faiths. I know that many Catholics believe that contraceptives interfere with God's plan of procreation. I respect that. I do not respect the right to push this belief onto others via insurance coverage, but I respect the right and reasons to the belief. What I do not understand, is why condoms and birth control pills are lumped into the same category and same purpose. It seems like a major logical flaw. One serves only as a form of sex protection, the other has much farther reaching implications. Furthermore, regarding procreation, I know of many women who never would have been able to conceive without the protective and healing benefits of birth control. Thus, by refusing these women medical treatment, not only may they be unable to ever reproduce, they might be barred from enjoying life (if they're in pain/misery 24/7). I wish that employers and individuals with religious feelings on birth control would be: (1) more concerned by these issues and (2) understand that birth control is not the equivalent of a female condom.
I'm not done yet. There is so much more to be said and I want to say it. I admit I'm not really giving any solutions to the current problem. It's a complex and delicate balance between various beliefs. What I am trying to do is explain why birth control really should not be simply lumped into 'sex protection'. Because for many women, it means much, much more. Many abstinent women take it too. Please make yourself really aware of what that medication is before you form your opinions.
I really must apologize for the delay in my entries lately. It has been a bit of a hectic/busy time for me. Thanks to my recent surgery, I was finally able to get a job again. But my back is still weak from Lupron and I am constantly exhausted from all the standing/talking involved. But, as luck would have it (mostly bad luck), I am sick with gut problems and cannot stand today. So, stuck in bed, I've resolved to do some much needed catching up on my internet obligations. So, once again, I sincerely apologize! I will try harder to plan my site into my busier time schedule and keep it a priority. Thank you everyone for reading and sorry if you were disappointed with lack of consistency.
We've established that the combination of pain, treatments, and social isolation of endometriosis can lead to depression. And that such depression can intensify the pain--a dangerous and scary cycle. You or a loved one could be trapped in it right now. So when preparing for an escape from that vortex, one must be prepared to deal with all the factors that created it. Never approach it with a one-sided or single treatment. (Also, do not just take my word for these treatments. Do research, investigate for yourself. No matter how big of a nerd I may be, I'm not a doctor. Please remember that this advice is no substitute for an actual medical professional (which hopefully, once my endometriosis is under control, I will some day be))
First off, there are medical treatments that can help. As in prescriptions. Personally, I have never been a huge advocate of the personal-pharmaceutical-bathroom-counter approach. Having dozens of pills a day can lead to serious problems down the road. But there are a couple medications that can really help. First off, hormonal treatments can help limit the cyclical pain of endometriosis. Which one will work for a specific person, I can't say. It's very individual. But getting that side of the disease a little more under control can help your overall being. Secondly, an antidepressant can also help both depression and chronic pain. Antidepressants are actually often used to help treat chronic pain. It helps by reducing the severity of perceived pain--meaning it will reduce how badly something hurts without actually treating the pain's cause. That may seem like a sloppy way to combat pain, but by reducing that pain perception, it can help gradually relax your body's response to pain and give it an internal environment more conducive to bodily repair. Being constantly stressed out or depressed can heighten your body's 'freak out' response and lower it's ability to deal with internal problems (like immune responses). By treating the brain imbalances caused by depression and/or chronic pain, you can help deal with that pain.
There are other, non-prescription methods of dealing with the cycle of endometriosis and depression. And taking a 'whole life' approach to dealing with that cycle is pivotal for escape. As I said, there are many different contributing factors for that cycle, and you need to deal with all of them.
Some of these methods include body care. A critical method is exercise. Often people in chronic pain avoid exercise. But in fact, exercise can help reduce the severity of perceived pain and strengthen the body against further injury. Additionally, it is a natural antidepressant (same chemicals are 'produced'). And, specifically for endometriosis, it can help the body better prevent further adhesions.
Other methods are more psychological. Things such as recovering control over one's life and therapy. Endometriosis makes a person feel lost in their own life. The pain and issues it causes restrict social activity and productivity. It can make a person feel helpless. And feelings of helplessness are prime factors in causing depression. So find ways to take control and reject feelings of helplessness. Even little things, such as a part time job, hobbies, self transportation, or making a website (hint hint) can help restore an individual's feeling of control. Additionally, psychological therapy is a valuable tool for combating depression. My personal favorite (and the one deemed most effective for long-term problems) is cognitive-behavioral therapy. It assesses what behaviors and factors reinforce feelings of depression and teaches the patient how to deal with them head on. It can change the way a person thinks/feels about something and can make you aware of negative influences you were not even aware of.
Last, teaming up with doctors that specialize in pain management (in addition to your primary health specialist) can help you launch a full-on attack against chronic pain and depression. Pain clinics are prepared to help people who deal with long time chronic pain and will be more understanding of what you may personally need to restore balance to your life. They recognize that both pain and depression play into your current status and will often recommend treatments that helpful for dealing with both.
If you or someone you care about is dealing with endometriosis/chronic pain and depression, or even presents signs of such the case, help by making yourself/them aware of your options and tactics for treatment. Just ignoring it will not make the problem go away. Just dealing with one side will not make the problem go away. The cycle of endometriosis and depression is a real problem and has real consequences. Take charge of it and prepare yourself to effectively handle your life!
I want to be happy. And this site is about that chance. How to strive to thrive in the body I've got and maybe turn my experiences into something worthwhile.
This site aims to help educate and reach out to people all over that struggle with pain or illness. To try and make something helpful. I work as a medical research writer, my background is in neuropsychology and biology, and I want to share what I learn in a way that is easy to understand. I am not a doctor. I'm definitely not your doctor. I am just some lady who wants to make someone's (anyone's) life a little bit better. Whether you have endometriosis, a chronic injury, a struggling friend, or just want to learn something new, I hope to make a place that has what you are looking for.
Thank you for stopping by, I wish you strength in your health and happiness.