Author’s note: I am not a doctor or medical professional. All information below is based on research and personal experience. This is not meant to be a substitute for healthcare or a definitive resource on endometriosis. Please do your own research before pursue any treatments.
Throughout the piece, I reference women. While the vast majority of people with endometriosis are women, this disease also affects transmen and non-binary individuals, as well as, very rarely, cismen. The use of women is not to be exclusive of those of other genders who suffer from this disease but to highlight how the gendered nature of the disease has affected treatment and research.
This piece is cross-posted from a prior blog.
Welcome to Endometriosis Awareness month!
As one of the many people who live with endometriosis, I thought I would take some time to talk about what endometriosis is, my own experiences with it, and why awareness is so important.
For me, it all started while I was in college. My periods had never been particularly enjoyable, but they started to grow more and more painful each month. It got to the point where a wave of pain would strike and I would drop to the floor as sharp pains ripped through my abdomen and I lost control of my body. I was barely able to function during my period, and each month the period of time I was affected grew longer and longer.
I went to a gynecologist about all of my symptoms, but was told that these were just bad cramps and plenty of women deal with this. I was given a prescription for Aleve and was sent on my way. I took Aleve, but it never even touched the pain. I tried to just push on with my life, but the pain that wracked my body each month was making it nearly impossible to function.
During this time period, I ended up with ER a couple of times with pain so severe I couldn’t think straight or move. Each time, ultrasounds showed that I had had an ovarian cyst burst. I would be given some pain meds for a couple of days which would help me actually function for a while, but the pain always came back. I tried going back to the gynecologist, but continued to be dismissed.
I started researching things online to try to find an answer as to what was wrong with me. I read up on PCOS, cancer, adenomyosis, endometriosis, and many more. The more I read about endometriosis, the more it seemed to fit.
I went to a new gynecologist with all of my research in hand ready to fight for treatment. This time I got lucky and saw a doctor who actually listened to me. After hearing all my symptoms and how much it was affecting me life, she told me that she suspected that I had endometriosis. However, she wasn’t very familiar with this condition, so she wanted to refer me to her co-worker who specializes in endometriosis.
I met with this man who agreed that I likely had endometriosis. He told me we could try treatment to see if it helped or we could do surgery to conclusively diagnose. I elected to go for the surgery before trying medication, and during that surgery I was conclusively diagnosed with endometriosis which they found on my uterus, pelvic walls, fallopian tubes, ovaries, bladder, intestines, the ligaments holding my uterus in place, and my stomach. While they were in there checking things out, they also ablated the masses they found.
We should probably stop here for a minute to talk about what endometriosis actually is. You may have seen posters about it in your gynecologist’s office or read about it in relation to Lena Dunham recently. You might have heard that it is one of the leading causes of infertility in women. But what exactly is it?
Endometriosis is a disorder in which tissue very similar to endometrium (the lining that grows in your uterus and normally sheds with your period) grows outside of the uterus. Most often, endometriosis is found on the outside of the uterus, the ovaries, the fallopian tubes, or on the pelvic wall. For some unlucky people (like me!) endometriosis grows all over the place. Endometriosis has been documented on every organ of the body (including skin, eyes, and spine!), except for the spleen.
Not only does this tissue grow places it’s not supposed to, but it keeps acting like the uterus lining. It thickens throughout the month before breaking down and bleeding with your period. Now, when the tissue is where it’s supposed to be, the blood is able to escape out the vagina, hence, period. For those of us with endo, this bleeding doesn’t have anywhere to go other than the surrounding areas. For instance, I have endometriosis on the outside of my stomach, so when it comes time to bleed, the only place for the blood to go is into my abdominal cavity.
While we need our blood to survive, most of our internal organs don’t like it very much when blood ends up where it’s not supposed to. The blood that ends up trapped irritates the surrounding tissue, and, if it’s not able to be absorbed, turns into scar tissue and adhesions which is a fancy way to say that it starts bind your organs together. Yep, not only do you get your period throughout your body, but the blood acts like super glue sticking all your organs to each other.
Now, there are many women with endometriosis who have no symptoms whatsoever. These women, if they find out, usually discover this due to fertility issues. All the scar tissues and adhesions that can come along with endo, particularly on the reproductive issues, can interfere with fertility in a number of ways. Many times, fertility issues can be resolved with medication (more on that in a minute) but there are cases where fertility is irreparably damaged.
There are other women (myself included) who experience a great deal of pain due to endometriosis. This pain can take on many forms and isn’t necessarily tied to when our periods fall. For me, the week of my period is full of cramps that pull me double and make it nearly impossible to straighten my torso. These cramps wrench my body making it a challenge to sleep. As my period comes to a close, the pain subsides to a more manageable level. Note that I didn’t say it ends, it just gets to a point where it is easier to function and less willpower is necessary for everyday tasks. For the next week or so, I tend to remain in this state with occasional sharp bursts of pain, but during this time I am able to function fairly well. After that lovely week is up, my ovary shoots out an egg (or tries to at least. One of my fallopian tubes is blocked so it’s hit or miss if the egg is actually making it out) and my pain skyrockets. I usually have a few days of “maybe if I die it won’t hurt so much” levels of pain associated with this which then lets up slightly into “why must I ever be apart from my heating pad it hurts to breathe” type pain which mixes with pain that feels as if someone shot a bolt of lightning out my rectum. All of this builds until I get my period and this all starts again.
Logically, you probably assume that the level of pain with endometriosis is correlated to how extensive the growths are. Unfortunately, this isn’t the case. Endometriosis, like cancer, is broken into four stages. Stage I (minimal) involves superficial implants (clumps of endometrial-like tissue rest upon organs rather than root into them) that are isolated and no adhesions. Stage II (mild) still doesn’t have adhesions, but the implants are more numerous. Stage III (moderate) indicates multiple implants that are more deeply rooted as well as some adhesions (scarring) often around the fallopian tubes and ovaries. Stage IV (severe) has a bunch of implants as well as think adhesions. We would assume that people with Stage IV would have way more symptoms and pain that someone with Stage I, however, any person with any stage can have severe pain and there are women with Stage IV who have no pain or symptoms.
So how do we treat endometriosis? The answer to this varies depending on the level of symptoms and stage of the disease. Before we dive into treatment, however, let’s look at the diagnostic process. While endometriosis can cause horrific pain, the sources of that pain are often pretty small in the grand scheme of things. As such, we have a really hard time picking up on endometriosis using imaging. MRI’s might possibly show something going on in more advanced cases and ultrasounds really can’t show anything other than cysts which could indicate endometriosis or a whole host of other issues. As such, the only way to actually diagnose endometriosis is surgically. This is often done laparoscopically which involves making several small incisions through which cameras and other instruments are inserted. Usually, if they find endometriosis while they’re in there, the surgeon will try to get rid of the implants and adhesions. This can be done by ablation which is basically burning out the endometriosis or excision which involves cutting it out. Overall, excision is a lot more effective because the surgeon removes everything they can find, both what is visible and what is below the surface. Ablation only gets rid of what is visible. However, not all surgeons perform excision as it needs to be much more precise (they are cutting things off of your internal organs!).
Because surgery always carries its risks and not everyone wants to take that risk to find out whether or not there is anything going on in there, many doctors will give a loose diagnosis based on symptoms and provide treatment. If the treatment works, the diagnosis is further supported. If it doesn’t, doctors will pursue other options.
So what is this treatment I keep mentioning? There are few different options. Since endometriosis is fed by estrogen, the medications used to treat it work by affecting hormones. As such, one of the main treatments is hormonal birth control like the pill. For many women, going on the pill reduces many of their symptoms, particularly pain. This is awesome for those it works for, however, birth control can only keep endometriosis from progressing, it won’t do anything about the implants and adhesions that already exist. This works particularly well for those who have had surgery to remove everything the doctors can find.
While birth control can help, the big baddie of endometriosis treatment are GNRH-blockers such as depo Lupron. These drugs put the body into a state of false menopause by stopping all production of estrogen. These medications can be very effective for some people because it starves endo of the hormones it needs to grow. Not only will GNRH blockers stop the disease from progressing, but they can actually reduce implants that are already present. This all sounds awesome, but GNRH blockers can come with some pretty hefty side effects. Just like actual menopause, GNRH blockers can cause hot flashes, mood swings, and all that fun stuff we usually think of. They also increase the risk of osteoporosis which can be a huge thing for younger patients who still have many years left of needing their bones to function as bones. Some patients report horrible migraines, mood swings that make it nearly impossible to function day to day, and many more terrible side effects. GNRH blockers are taken by injection either in one month or three month doses which means if you start taking one of these drugs and can’t handle the side effects, you’re stuck with them until that time frame is up.
Aside from medical intervention, there are a wide variety of diet, lifestyle, and natural remedies that help many women manage their condition. Many people swear by the endo diet which is a very restrictive diet that focuses on cutting out anything that functions in the body like estrogen (such as soy) and anything else that tends to cause endo suffers problems. Light to moderate exercise can be beneficial. Even if it doesn’t help with the pain, it can help lift your mood which is huge when facing a chronic illness. There are many natural remedies that are purported to help with endometriosis though few of these have been studied. Always research treatments before taking them!
After I received my official diagnosis, it was time to consider treatment options. Throughout my teens and early twenties I had tried a variety of birth control pills, but I could never stay on them because they severely exacerbate my mental health conditions. So when it was suggested I try birth control, I was very resistant. While it may have been able to help ease some of my endometriosis symptoms, the severe toll these pills take on my mental state is not worth it for me. On birth control, I lose my ability to function which is not worth possibly reducing pain levels. The doctor who did my surgery wanted me to start taking GNRH blockers which I am also highly uncomfortable with. Due to my intense reaction to birth control, I fear for my mental health were I to take one of the drugs. The GNRH blockers have the added concern for me that once it’s in your system, you’re stuck with it until the month or three months are up. If GNRH blockers affect me nearly as badly as birth control does, I cannot afford to be out of commission for that long. When I refused to take the GNRH blockers, this doctor refused any other treatment.
The surgery significantly reduced my symptoms at first, so I went about my life, enjoying being able to function again. After a few months, though, symptoms began to return. At first I just fought through it because I was very discouraged after my dealings with that doctor. However, as things got worse and worse, I began looking into other treatment options. I came across a surgical technique using robotics that was able to excise implants effectively even from sensitive organs. I was able to locate a doctor based out of NYC who utilizes this technique and scheduled an appointment. After a few months of tests and appointments, I had my second surgery about a year after the first. Once again, implants and adhesions were removed from all throughout my abdomen.
That was nearly a year and a half ago for me. I’m still at a stand still in regards to treatment. I use a variety of home remedies (especially my heating pad) to help with symptoms throughout the month, but after a stretch without health insurance and some continuing financial strain, I am not able to pursue medical treatment right now. Hopefully soon, I will be able to pursue treatment, however, I am also still hesitant about taking anything hormonal so I’m not sure where that will lead to.
We’ve looked at what endometriosis is, how it’s diagnosed, and how it’s treated, so what next? Endometriosis is primarily a woman’s illness, though there have been some very rare cases of endometriosis appears in cismen and, of course, non-binary individuals and transmen can be affected. Because this is a disease that primarily affects women, research and treatment options are far behind where they should be for a condition that has been known since the 1860’s and was documented more than 4,000 years ago. Despite all the time that has passed, we do not know what causes endometriosis. There are many theories, but doctors and researchers are widely divided on these. While there are options for treatment, these options carry many side effects and are not always effective. Birth control can only slow or pause the growth of endo. GNRH blockers can reduce growths but do not always have an effect. Surgery can remove what doctors can find, but there are often implants that are too small to notice or ones in areas that surgeons don’t check or don’t feel comfortable operating on. A hysterectomy can help, but for some, the endo returns years later.
Gender also comes into play with diagnosis. I’ve already discussed my experience getting diagnosed and the resistance I faced. Sadly, my story is one of the better ones. It only took me about two years to get diagnosed. The average length of time it takes for most women to get a diagnosis is twelve years. To this day, society as a whole down plays women’s pain. Start reading stories from women with endometriosis and one of the most common themes you will find is the dismissal these women have faced. They are told that this pain is normal. Told that they are just oversensitive to the pain that all women face. Women begin to doubt themselves, growing to believe that the pain they feel is all in their heads or that they are simply weak for not being able to handle what it seems everyone else can. Even when a woman can stay strong in the knowledge that this is real and not normal, finding a doctor will to go down the road to diagnosis can be very difficult.
Even when we are able to get diagnosed, women also face further barriers regarding treatment. Too many of us are told to take x treatment, or else. I have been denied treatment because I would not take GNRH blockers, which was a decision I came too after weighing the potential risks and benefits and my own personal health difficulties. Many of us face patronizing attitudes from doctors who show us that our opinions and decisions for our bodies don’t matter unless we do exactly what they say. Further, fertility is often one of the most emphasized aspects by doctors. Even though I do not want to ever be pregnant and have been very open about this with doctors, every gynecologist I have met with has emphasized that my fertility may be in tact and have pushed treatments as fertility sparing rather than the best option for my pain and my body. I have been told that I will change my mind eventually when I try to explain that my fertility really isn’t important to me, and, if anything, I’d rather be infertile. Many women are denied hysterectomies because they do not have children.
Endometriosis affects between 6-10% of women. This condition can be life altering and debilitating. We need more effective treatment options. We need more research into the causes, treatment methods, and diagnosis. We need to listen to women and trust them to know their own bodies. This month, in celebration of Endometriosis awareness month, let us bring these issues to light so that we can move towards better options for the many people with this life long condition.