As a young girl, I was ill for many years before being diagnosed. Like most people, I had never heard of Endometriosis and Adenomyosis. Endometriosis is a condition resulting from the appearance of endometrial tissue outside the uterus and causing pelvic pain. Adenomyosis is a condition characterized by the abnormal presence of endometrial tissue (the inner lining of the uterus) within the myometrium (the thick, muscular layer of the uterus). These conditions can cause severe pain, especially during menstrual cycles, pain with intercourse, pain with bowel movement and or urination, infertility, excessive bleeding, and more.
I am bedridden, and as a 26 year old wife, mother, and business owner (although I’m not currently able to work) I have a lot of responsibilities. The simple things; like keeping a clean home, keeping the fridge stocked, making sure there’s clean laundry, bedtimes, bathtimes, and of course earning some money to help support my family- It kills me that I can’t do these things, even the activities of daily living. My husband has gone from being my husband and best friend, to my husband/best friend/caretaker/homemaker. He has to be in charge of everything! It is a lot of pressure on him and unfortunately, I feel a lot of guilt.
I dream of the days I have the strength and energy to pick my daughter up from school. The days when I’m with it enough to actually focus on a conversation I’m having with my husband. The days when I can talk to other mums in the playground or in shul. I miss the strength I used to have, to be the rock that my family needs. People get a shock when they hear about our lifestyle and how we cope (or try to cope). We are extremely lucky to have the help and support of family and friends. But unfortunately, the burden of poor health still lies upon us. Our roles have changed and I spend the majority of my days in bed, uncomfortable, in pain, feeling sick, not able to eat, dosed up on meds and most of all, scared.
Jewish women are known to be strong, to be the foundation of families, the one who holds everything together and keeps the feeling of Judaism in the house. Our new lifestyle makes this very difficult. My husband can no longer go to shul twice a day as he has to be there for my daughter and I. We can no longer have guests to enlighten and join us for Shabbat meals. Having a chronic illness affects our family in so many ways. Sometimes I look at my husband and wonder if he feels like a single dad? How can I do that to him?
Some days I hear him and my daughter arrive home and I want to drag myself up to say “Hi” and ask about their day. But I just can’t move. My body is paralyzed from pain and weakness. They come in to see me and I wish more than anything that I could get up and do homework, prepare dinner. Instead, I watch my husband do it all, while I lay there fighting to move, screaming at my body to get up.
About a year ago, my health took a turn for the worse.
Although I have suffered from Endometriosis since a young girl and I was finally diagnosed at 18. I had to leave school at a young age and spend many nights in the hospital, and after 4 surgeries, I was lucky enough to get engaged. I felt like I was getting my life back on track. Many people in our community believed due to being unwell, and especially having an illness that affects fertility, I should only be allowed to marry someone who is also unwell. They felt that it would not be fair to my husband to marry me.
Despite what others thought, we met and dated. My husband had definitely seen me at my worst before we got married. During our engagement, I had to have what was then my 3rd surgery to remove the recurrent Endometriosis. Three months later we got married, and I was well enough to manage our home, get a job and although I was weaker than the average healthy woman, I pushed myself.
Knowing we may have fertility issues, my specialist suggested we do fertility tests, just before our one year anniversary. Having been told from a young age that I could have problems getting pregnant I knew this was the right thing to do. So we began with our first scan, which shockingly showed a heartbeat- something completely unexpected! But the specialist told us not to get our hopes up, as many Endometriosis patients can have an ectopic pregnancy (meaning the baby grows outside the womb). He did some further tests and called us as soon as he got the results. He called us the day of our first anniversary to say he was as shocked as I was but we were pregnant. A few complications during birth, but she was our miracle.
For some women with Endometriosis, pregnancy can alleviate some symptoms. During my pregnancy and for the following few months I was at my healthiest. I set up my own business (making and selling wigs) and took care of my family. For the first time in my life, I was actually doing something I wanted to do, felt like I was being an adult, taking care of my family, and working! It felt amazing.
But it wasn’t long before the pain came back. I underwent the usual tests and surgery, but this time the Endometriosis could not be removed, as it had grown in the muscle wall (Adenomyosis) and that cannot be removed. Many people with Adenomyosis have a hysterectomy but not all are cured. So this was not a risk I was willing to take right now. Many women are put in a state of medicated menopause; we tried this for a year and it was unsuccessful. It didn’t help with the pain. Additionally, the stress of going through menopause at 25 was not worth it.
Up until this point in my life, I didn’t talk much about Endometriosis. My friends knew I was ill but they didn’t know much about the illness. After all, many women don’t talk about their periods or fertility. It’s all kept very hush. What I don’t think many women realize is how many other women are going through similar issues and if we can be brave enough to speak up about it, others won’t feel so lonely.
Tomorrow I will be having surgery after a week spent in the hospital. I’m relieved that the ball is finally rolling, however, I’m also anxious as this is my 6th surgery (not including c- section) and it’s quite a big one. We’ve also put a lot of hope on it, which I now realize was silly. The surgery will not fix the problem but will stop it from getting worse (for now) and hopefully relieve me of some pain. I’ve never actually gone this long without seeing or being with my daughter, and she’s been twice to visit. Watching her leave and cry that I can’t come home with her is so hard. I finally understand the saying, “Man plans and G-d laughs.” This is not what I expected my life would be like, but I’ve learned that we aren’t in control of so many aspects of life. We have to trust and have faith, and there are so many days I struggle with this. At the bottom of my heart, I know that this is what G-d has planned for me and I pray it makes me into a better person.