Endometriosis | Lifelong Battles And Lessons Learned

Something I’ve been wanting to start doing for a while now is sharing the health stories and experiences of other women on this blog. With over 80 known autoimmune diseases, not counting chronic diseases, there is a lot that we can learn by listening to others’ stories. My hope is to create a community where women feel safe talking about their battles, and where they don’t feel so alone. Where women fighting to live a somewhat normal life while battling diseases and disorders, that are sometimes completely invisible to outsiders, can feel understood. And a place where women can be recognized as the warriors they are.

Xx Monti

Endometriosis | Lifelong Battles And Lessons Learned

Introducing A Life-Long Friend

Ganga and I first met when we were around 6-7 years old. From then, until this very day, we’ve pretty much always been best friends. We were neighbors through grade school, roommates in college, and bridesmaids at each other’s weddings. And we’ve been there to witness many of each other’s battles. When Ganga was diagnosed with Endometriosis a few years ago, there was finally an answer to the pain and struggles she faced since puberty.

Naturally, she was the first person I asked to share her story here on Purfect Sunday. I know that a lot of women are hesitant to talk about something so personal. So I am so grateful she said yes.

Ganga’s Story

Life Leading Up To Being Diagnosed

-The Early Years

My name is Ganga pronounced gun-ga. I’m currently 39 years old and born and raised in California. Although there are days that can be challenging, I have an amazing career working as a disability access specialist at a university.

When I was only 12 years old, I was horrified one afternoon to find that I was bleeding. I had started my period but I honestly thought I was dying. You see, no one ever told me about the natural phenomenon that happens to all girls. My older sister heard my screams and ran to find me in the bathroom. For the most part, she knew what to do to help me, but I was still in so much pain that I fainted.

-Adulthood

That was the very first day of my very first period. For the next 19 years, I experienced excruciating painful, long, and heavy menstrual cycles every single month. This put me in many dangerous situations over the years, such as fainting in public on multiple occasions. There was even a time I went to buy pads, but was in so much pain I was driven home by a stranger.

At the age of 31, I decided I’d had enough. I’d figured out that by using an IUD I could stop having a period. This worked great for about two years. At this point, we decided we wanted to start a family so I removed the IUD. My menstrual cycles immediately started back and with it, came pain that was so extreme. I wanted to get the IUD put back in. But after two failed attempts at inserting it, I fainted from the pain and gave up.

Over the years, my doctors usually downplayed my symptoms and said that some girls just have painful periods. A condition called dysmenorrhea. No one ever told me about endometriosis or attempted to look into why I had so much pain and discomfort. Instead, I was told to stay on the pill so I wouldn’t have a period. But we were still trying to start a family, so that wasn’t an option. And each time I went off of birth control, my period came back with a vengeance. What was once two weeks of agony eventually became nonstop pain that lasted the whole month.

-Surgery

At 38 years old, I’d made many lifestyle changes including diet and acupuncture, but was still unable to get pregnant and was living every day in extreme pain. Despite what the doctors had told me, I knew something was wrong. They never referred me to a specialist, but through my own research, I was able to find a surgeon in Oregon that specializes in excision surgery, the gold standard treatment for endometriosis.

One of the toughest parts of diagnosing endometriosis is that doctors are unable to do so until surgery. But after talking with the specialist he was almost sure of my diagnosis, which with my surgery was confirmed. I had deep infiltrating endometriosis, the most severe type, and the doctor was pretty sure I was born with it.

How Things Have Changed Since Surgery 

Surgery wasn’t an immediate fix to my pain, the recovery was rough and I was still suffering a lot. My husband at the time was unsupportive of my recovery and couldn’t handle it when my condition flared up and I was in pain. I’ve since gotten a divorce. Although that was yet another tough painful experience, after he left my pain began to reduce and my recovery went faster. I graduated with my Masters’s in social work, and one year after successful surgery, I’m back to exercising regularly and am working on getting my body back to a strong a healthy state. For me, eating became a way to numb the pain. I gained 50 pounds before the surgery even happened due to chronic pain and the inability to move much.

3 Life Lessons Your Health Condition Has Taught You 

1. No one can take care of you as you can. Be selfish and don’t let anyone make you feel guilty for doing what’s best for your body and mind at all times.
2.  Expand your support network to friends and family. Don’t take it personally when others can’t understand what you’re going through or your pain. Stay close to those who are going through it themselves or who can be supportive to you during difficult times.
3. You know your body and your limits best. Don’t let anyone pressure you to do anything you’re not comfortable with. Rest when you need to and move when you can.

What Helps You Get Through Flareups or Hard Days

• I can’t stress enough how important it is to have a really good osteopathic practitioner to support you with endometriosis pain. Whenever I have a flare-up and I see my osteopath, I’m back to feeling better within a couple of days. If I’m not able to see him right away what helps me with flareups is to make sure that I’m eating regularly and staying hydrated. Those are survival days so if Taco Bell is what I want, Taco Bell is what I get.

• I also have a really good microwave heating pack that smells like calming lavender. It’s heavy enough to stay in place and provides soothing pain relief with high heat.

When we’re in pain, especially when we’ve experienced it chronically for so many years, we tend to feel like it will never end. But I’m here to tell you that it does end, and with the right medical care your quality of life can improve and things will get better. Be gentle with yourself and make sure you give yourself grace and compassion every day. 

I’m so grateful I was able to have the surgery even if it didn’t lead to the pregnancy and happily ever after marriage, I had hoped for. I have my life back, l have my body back, and I’m moving on with life. 

Xx Ganga