It’s hard finding words to describe how this past year has been for me. Even now as I sit here I feel anxious putting pencil to paper (or more like finger to key).
I feel my words will be inadequate and I worry I won’t do this subject justice. But what I can offer are the few facts I have to share and I️ can do my best to be honest about my feelings concerning them.
In May of this year, after an exploratory surgery I was diagnosed with stage 4 endometriosis (Stages 4 isn’t terminology all doctors like to use. But it simply is a way to communicate the amount of internal damage done by this disease. And stage 4 is just a way of saying the damage is very extensive).
If you don’t know what endometriosis is, it is defined as the growth of inner uterine tissue outside of the uterus. And, the inner lining of the uterus is not supposed to grow anywhere else but the inside of the uterus.
This can manifest in a multitude of ways (uterine tissue growing on lungs, bladders etc.), and mine has grown specifically on my colon, outside of my uterus, Fallopian tubes, and ovaries.
And as health class has taught us all, that inner lining tissue in the uterus breaks down and bleeds every month during menstruation. But since my inner lining tissue is on top of other organs it causes that same bleeding where it should not, causing lots of scar tissue over the years.
As can be imagined, this is extremely painful. In fact, many women experience so much pain they cannot even leave their beds, and some feel this pain on a constant basis (not just at certain times of the month).
It is incurable, chronic and progressive. And contrary to popular belief, surgery, even a hysterectomy will in some cases not help at all. 1 in 10 women have it, and on average it takes 8 years to get a diagnoses (As doctors and scientists are still quite baffled by it, not knowing exactly what causes it or how to cure it).
And as far as symptoms go (other than physical pain) it comes with prolonged and abnormal bleeding, digestive issues, bladder issues, sexual issues, fatigue, insomnia, hormonal imbalance and infertility (And more. I can’t even keep track of all the symptoms so many individuals face). And unfortunately the severity of the damage done to the organs (i.e. what “stage” you might have) is in no way equivalent to the intensity or amount of symptoms experienced. Meaning, you could technically have stage 1 and experience far more prolific and intense symptoms than a stage 4 sufferer. It just depends on the individual. And doctors can’t seem to figure out why this is.
Despite the many symptoms I personally experience, infertility is one of the most painful for me. My endometriosis has caused so much damage to my reproductive organs I have less than 1% chance of ever having biological children.
Not all endo sufferer’s odds are as low. Some women’s endometriosis has caused less damage and thereby might give them a higher chance of conceiving, which is why you might know some endo sufferers who have gone on to have many children.
But at this point for me, there is very little chance of that happening. An endometrioma (growth/tumor caused by the uterine tissue) has grown on both my ovaries and has been slowly eating away at my healthy ovarian tissue, depleting them of their egg reserve and function. The scarring from the uterine tissue that has grown on my Fallopian tubes has rendered them basically useless. And since they are in charge of ushering a fertilized egg to the uterus and now cannot, I am at very high risk for ectopic pregnancies.
Which did not come at a shock to me, because you see, I already had one. Years ago. It was devastating.
But I always told myself that one day I would have a healthy pregnancy. One day I would not have to say goodbye to the little embryo inside me. One day I would carry a baby to term like so many other women. And now I’m finally facing the reality that I most likely will never have those experiences after all.
On top of this devastation my disease causes me a lot of physical pain and a lot of anxiety. It affects my day to day life more than I know how to express and it makes me feel so isolated. Not only does it at times keep me in bed for days, even weeks at a time, but with menstruation being such a taboo or awkward subject of conversation in our society as it is, I many times feel I can’t even tell people what I’m going through.
Then, there is the added isolation that comes from wide misconceptions about the disease. This disease comes in so many different packages that sometimes people who have known another sufferer assume your version of the disease is the same. And in my experience many times this has meant people assuming it wasn’t that painful for me, thereby treating me like I was overreacting. They also assumed I wouldn’t have infertility issues because they have known someone else for whom this was the case.
It is exhausting educating people every time you share that you have it. You’re already emotionally spent and then to have to defend or explain why your situation is actually contrary to their assumptions is more than a little upsetting.
I need to take a moment to say very clearly: I don’t mean to criticize people who don’t know better. I’m just being honest with you what this experience has been like for me.
I will say I am extremely grateful that it is not fatal and that in all other aspects I am healthy. This is something I never take lightly and something that reminds me constantly to count my blessings as other people out there are fighting for their lives with their diseases.
I wish I had more to say on this. I want so much to wrap up this post with a pretty pink bow and say that I’ve learned to not be sad anymore. That I’m not ever scared and that I wake up thanking God for my blessings every day and carry on with life with new vigor.
But the truth is I am still sad many days. I can’t stop that lump rising in my throat even now as I type this. I am also scared, stressed and on some days, depressed. And though I am incredibly grateful for what I have, and though I do carry on with life fighting to live it fully, that doesn’t negate that this is still really hard to walk through.
I started seeing a therapist in response to all this and she likes to remind me that it is perfectly normal to have all kinds of opposing feelings at the same time: happiness and sadness, hope and hopelessness, gratefulness and anger. It’s what comes with grieving. And though I’ve lost no one this year, I’ve lost some of those long-held expectations for my future.
This has all been really scary for me to share with you. I think because I’m afraid of the criticism. Because believe it or not, I’ve heard my fair share of it. I’ve also heard a lot of hurtful fix it answers. And I’ve even lost relationships because they simply started avoiding me after I shared with them what I’m dealing with.
I understand we can’t always know what to say or do in every situations. I am perfectly guilty of this myself. But in hopes of helping my other endo sisters out there, I encourage you to just listen and be there for your friend, sister, mother or daughter who has this disease. It’s the best gift you can give.
And lastly to my endo sisters out there: you aren’t alone. I see you, I admire your courage and the fact that you are facing another day. You are a beautiful, precious person and I believe our stories don’t end here. It’s just part of the journey.
I love you all, and thank you for holding space for me today.
*Here are some resources for further education and help regarding this disease:
–University of Maryland Medical Center: This site is incredibly educational when you want to understand everything you can about the disease, as well as current treatment options and what those entail. This particular article here is one of my favorites of theirs (detailing theories on what might help the sufferer according to real scientific studies).
–Endometriosis Foundation of America: Co-founded by Padma Lakshmi (an endo sufferer herself) and a whole host of docs and specialists. This is one of my favorite spots for general education on this disease. It also comes with helpful articles, a list of great endometriosis blogs, and more.
–Nancy’s Nook: A Facebook group (must request to join but easy to do so) that is an amazing resource with lots of great advice when you need it from fellow endo sufferers.
–Dr. Weil’s Anti-inflammatory Food Pyramid: Though there is no current known cure for endometriosis, many scientists suggest anti-inflammatory diets to help with pain management. This food pyramid is my favorite simplified yet thorough go-to resource for such a diet.
P.S. I’d LOVE to hear any of your favorite resources if you too are a sufferer.