I’ve debated about posting this blog for a while now, but I’m only sharing in hopes that it helps someone who may going through the same thing.
Hi. I’m Hayley. I’m 28 years old, I work a full time job, I write and blog on the side, like to travel, drink wine, cook, and I have Endometriosis.
For starters, what is Endometriosis? Endo for short, is a painful disorder in which tissue that normally lines the uterus grows outside the uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis. Rarely, endometrial tissue may spread beyond pelvic organs. (My disorder does effect some other organs as well.)
A little over a year ago, I was diagnosed with this disorder, and it had been mentioned by several doctors before then that I may have it, but until laparoscopic surgery is done to diagnose it, I never knew for sure. In May of 2016, I went to the doctor with abdominal pain, fever, bloating, and fatigue. I thought I had the flu. I’ve had a past with kidney stones and the thought of it being a stone crossed my mind as well, but this pain was different.
After a quick exam, my doctor sent me to the ER for a CT scan and tests. I didn’t think much of it, as this had happened in the past and resulted in stones and renal colic. I figured after an IV and some medicine, I’d be on my way home. I called my husband and he left his job and headed toward the hospital.
By the time he arrived, the ER doctor was referring me to another hospital with an OBGYN department that could handle things better. My scan showed a 10cm ovarian cyst that they feared would rupture. They loaded me up on pain medicine which made me even more sick, and we left for the other hospital.
This is where things get blurry for me and I blame that on the pain and the medication. Shortly after my visit we were in a small room consulting with a doctor on an emergency surgery. They would remove the cyst and anything affected by it which meant possibly my ovary, Fallopian tubes, etc. I didn’t really have time to think about what this meant for us in the future, and Ross just basically said he didn’t care about kids, he just wanted me to feel better.
The surgery was successful and although some things had to be removed, overall I was healthy, except for the fact that I had stage 2 – 3 (mild to moderate) Endometriosis that was positively diagnosed during the surgery.
After the surgery, I was on some hormonal medicines to help alleviate the pain and growth of the Endometriosis and to help decrease the size and formation of any new cysts. I had pain for months and the medications had a lot of side effects and I felt sick most of the time.
In the summer, I had several more flare ups and my doctor whose treatment option up until this point had been “pregnancy” was starting to get sick of dealing with me. He kept telling me to either continue more hormone medication, or get pregnant, but judging by my current pain levels and the amount and stage of my disease, he felt I would have to seek out a specialist and perform in vitro fertilization to get pregnant. He gave me the name of a doctor in passing, and said he would next see me when I was “expecting”.
I haven’t seen that doctor since.
Because the medication was making me sick and I was experiencing side effects, I spent most of my summer inside. I was borderline depressed, missing a lot of work, and stressed about my job anyway. I just didn’t feel like anything was going right. I was unhappy and still experiencing a lot of pain.
I called my doctor one more time after a late night trip to the ER in the fall. The ER doctor was more knowledgeable than my actual doctor had been. He didn’t want to perform a scan because I had so many in the last few months, and he urged me to seek long term treatment. He was kind and made me feel like I wasn’t crazy. When I called my doctor to tell them I had been in the ER and what he recommended, the nurse told me that “my treatment options are simply more medication or pregnancy and since neither seemed like something I wanted, she didn’t know what else to tell me.” That was the last time I spoke to anyone in that office.
Since then, I switched to a low sugar/low gluten diet because I read an article that said for whatever reason, it seemed to help lower pain and helped to keep the disease stagnant. After a few weeks of eating well, I believed everything I had read. I also started seeking out holistic approaches, including energy work, meditation, and crystal healing. You can roll your eyes all you want but since taking this approach on life, I haven’t had a large flare up since the fall. I did have one cyst rupture but the pain was manageable from home.
I try to find the good in all of this, even when I absolutely hate everything going on. At least Ross and I aren’t trying hard to have children, and are having our hearts broken every month over it. We aren’t even sure if we want kids, and that’s been the biggest blessing of all. I’ve watched tons of women struggle to have babies and I’ve felt so sorry for them. I don’t think I could handle going through the desire to want something so badly, and working so hard at it only to be disappointed. Those women are brave and strong and I admire them, but I do consider it a good thing that I don’t have baby fever at the moment. I feel like that would only make things harder at this point.
This whole situation has brought my husband and I much closer. We’ve found to enjoy what we have and are using this time to travel more and get to know each other more. We’ve got a dog that we treat as a child and sometimes that’s enough. Sometimes you don’t need more.
I’m so grateful that I’ve been able to find treatment options that don’t require tons of medications. I still take some, but not nearly as many as before and I’m hoping that a visit and consultation with a new doctor in a few months, will mean we can find an entirely different treatment route.
There have been some negatives to this disorder. People are always going to assume you’re just using something as an excuse, including disorders. I’ve had family members ask why we don’t have children and when I kindly explain to them that one, we don’t know if we’re ready and two, I have a disorder, they usually tell me, “Oh you’ll change your mind” or “Yeah I have that, too and I have several kids.” Some people think that severe cramps and irregular periods means that have Endo, whether it be self diagnosed or something a doctor mentioned at a yearly visit, but I try to explain that it’s been diagnosed by specialists and then I get the “Well you can look into in vitro” speech. Here’s the deal. If someone tells me they have anxiety, or depression, or an eating disorder, I don’t act like I’m annoyed. I also don’t pretend to know what they are going through. Lifestyle choices like children and marriage, are personal choices and should not be entered into lightly. You never know what a person is going through, and unfortunately, anything involving your reproductive organs usually gets people asking questions. I wish everyone had a little bit of respect and dignity before opening their mouths. That has been a tough pill to swallow, and I will say that it hasn’t gotten any easier. This is one thing that hasn’t waned. People are always asking questions and then think they already understand the disorder fully. If you have not been diagnosed or seen several doctors and had a thousand scans, been on medications you can’t pronounce, or had a surgery, then you have no idea what I’m going through. Okay. Thanks.
My best advice to anyone struggling with the disorder or to anyone who thinks they might have it, is to never settle on “maintaining”. Find treatment options and a doctor who are willing to go the extra mile for you and find a way to treat the disorder that best fits into your lifestyle and beliefs. That might mean that you sift through ten or twelve doctors before you find one you can relate to, and that’s okay.
Make sure you have a support system, whether it be friends or family members that stand by your side and know exactly what is going on. Avoid negative people who think you are just complaining about having PMS. You don’t have to tell everyone, it’s a very private thing, but it is good to have some people in your life who know the full story, that way they can help you on your way. (There’s a lot more I could share with all of you…this is just the top layer of it for me, but there are people who do know all of it. Their support has helped heal me most of all.)
If you decide to make lifestyle changes for treatment, remember that changes don’t happen right away. Things take time and it’s okay to implement those changes slowly. What works for some may not work for you, but you WILL find what works best.
Don’t be afraid to explore your options, and try new things. As long as it settles right with you, it might not be a bad idea to try something different out. I turned up my nose at the idea of a low gluten diet and “clean eating”. How on Earth could that help? What even IS gluten? And after four people and a few bloggers recommended it, I decided to try it and dammit it’s been one of the best treatments for me.
It’s been a long road for me, and one that I probably could have started traveling down sooner if I had known more about the disorder and listened to my body better. It’s very hereditary and my Mom had it very badly. Cramps and bloating are normal, but I shrugged off all of my symptoms as “period pain” when in reality, they were abnormal symptoms, precursors I wish I had known to watch out for. If you experience painful periods, nausea, bloating, heavy and irregular bleeding, and monthly abdominal pain, maybe chat with your doctor. 1 in 10 women have endometriosis or experience symptoms in their lifetime. Although it’s not widely discussed, I’m hoping that teachers and healthcare professionals start incorporating it into their discussions and studies. It’s not something to be ashamed of and could potentially help a lot of women be more aware of it, if we are all actually educated on it.
The only way to be properly diagnosed with having this disorder is by laparoscopic surgery that is normally performed in an out patient setting. If your doctor believes you have the disorder, he/she will likely recommend having it completed. If a doctor suspects you may be showing symptoms of the disease, he/she will likely prescribe birth control before any drastic treatment options occur. For some women, birth control is treatment enough, but for those of you who continuously experience these symptoms and find nothing alleviates your pain, ask for a referral to a specialist.
The biggest thing to remember in all of this, is that if you stay positive and look into various methods of treatment and doctors, you are bound to find a way to continue living the life you want. Whether it’s diet, medications, surgery, or holistic approaches, whatever you find that works for you, embrace it and don’t be ashamed!
If you suffer from the disorder and need someone to talk to, there are many support groups that can be found online. Endometriosis.org has a ton of information including worldwide groups, and support systems. You can find their website here. You can also contact me via the contact page of my site. It’s helpful talking to others who are experiencing the same things you might be.
I hope this article was helpful to anyone going through anything that affects their way of life. Keep your head up.