March is National Endometriosis Awareness month.
What is Endometriosis??
Endometriosis is a painful condition where the tissue that is normally lining the inside of the uterus (the endometrium) is found growing outside of the uterus. The ovaries Fallopian tubes, and tissues lining your pelvis are commonly involved.
Who and How Many Are Affected?
Research shows that Endometriosis impacts 1 in 10 women who are of reproductive age. It is estimated that endometriosis will cause infertility in 30-40% of those who have the condition. It is believed that 7.5 million American women are affected by this condition. And 176 million women worldwide. Not only do those with Endometriosis have problems with fertility, they also deal with life altering pain that can have an impact on all areas of their lives. Not just their intimate relationship with their partner.
What are the signs and symptoms of Endometriosis?!?!
-Painful Periods- Pelvic pain and cramping along with the possibility of low back and abdominal pain. The pain may begin before your period and extend several days into the period.
-Pain with intercourses
-Pain with bowel movements and urination – most likely experienced during your period
-Excessive bleeding during period
-Other symptoms someone with endo might experience: fatigue, bloating, nausea, diarrhea and constipation.
Now that I have talked about what Endometriosis is, how many women are affected and the signs and symptoms to watch for. I want to share a little of my Endometriosis story. As far back as I can remember I was always plagued by severe menstraul cramps. I’m not talking the kind of cramps where you can just take a couple Advil and go on. I’m talking about menstrual cramps that left me stuck in bed with a heating pad on my belly and one of those heat patches (see picture below) on my low back. I always bled really heavy and had pain at all points of my cycle, through most of the month when the Endometriosis is at its worst. I also had issues with passing clots during my period for several years. However, I was led to believe that those issues were due to the specific birth control I was on.
I have tried multiple forms of birth control over the years, from
the shot, to the ring, and the patch. As well as many different pills but none of them were really able to regulate my cycle, and make it a “normal” 28 or 30 day cycle. It wasn’t until like 5 years ago when I finally decided my symptoms weren’t normal and I needed to find answers. The first time I went in my doctor felt that i just had bad periods and we needed to try a different oral birth control. However, things couldn’t be okay with the severe pain and bleeding issues I was experiencing. Also an adult women in her twenties should not have cycles that ranged from 10 days to 4 months apart, & everything in between, even while being on birth control. Before that I just assumed I was one of those women who would have painful periods. And that would take. awhile to regulate my cycle. Boy was I wrong.
Finally in 2011, after multiple scans, ultrasounds and dr visits, I made another appountment with my OBGYN. All the scans and testing had never showed that my appendix needed yo be removed, deapite the most intense pain I felt was right in the area of my appendix. At that appt she gave me a couple different options for treatment.
I had THREE OPTIONS
1. Start Depo Provera Shot– I declined this because I gaines 40 pounds the first time I took it. And honestly I just couldn’t deal with more wt gain at that point.
2. I could recieve the Depo Lupron Shot, which essentially throws you into early menopause. It is effective because you would no longer ovulate, which should decrease the pain. I also denied this option because I was only 26 and not ready to be thrown into menopause.
3. My last option was to have a Laparoscopic Surgery which is the only true way to diagnose Endo. It is also a treatment because as they go in and look they also get rid (burn off) of any of the endometrium that was in places it should not be. This is what I chose. I wanted to know we were treating what we thought we were.
If you aren’t knowledgeable on Endometriosis, the only true way to diagnose it is to have a laparoscopic procedure where they put air in your belly and inflate inflate it so they can see everything with a very small camera. I had my first surgery in November of 2011, when she got in there she saw that I did have significant amount of Endometriosis. Which required her to ablate those sites (aka burn off) those spots, and clean out everything she could, in hopes of getting rid of my pain. This is also the procedure that is done for ladies with endometriosis who are having a hard time conceiving, in hopes that it will help them get pregnant and carry a baby to term!
Finally after having my first laparoscopy in 2011 I received the diagnosis of Endometriosis. And was told at that point that it would most likely going to be hard to get pregnant. Over the following year we found out that getting pregnant and carrying a baby was just not going to be much of a risk for me between the Endometriosis and Lupus. It would put me and the baby at much to high of a risk!! This is probably the worst news I’ve ever gotten. Over the last several years I have spent a lot of time crying over not being able to naturally have my own babies. Being a mom has been a goal of mine for as long as I can remember. I never wanted anything more. But I have since come to terms with this issue, and hope to adopt one day. I have always felt a calling to adopt. There are so many babies and kids who are in foster care that need a good mama and aren’t getting adopted. So adoption will most likely be the way I have kids. Even though it’s not how I’ve always planned. Do I still have down days about the fact that I will never carry or deliver my own baby? Yes, and I feel that it is just normal to have sad days and negative feelings as you go through life with multiple chronic illnesses. When your ultimate life plan changes you have to adjust. You can’t just stay on that same path.
For other women who don’t have all the health problems that I do and are able to carry a baby, if they could get pregnant, there are all other options. So, please don’t ever let anyone tell you that just because you have Endo that you can’t have children. Because thats just not the case anymore. There are options like doing fertility treatments like IUI or IVF, or even a surrogate.
Endometriosis is not a condition I would wish on anyone. Not even my worst enemy. I have currently had three endometrial ablations done. I am able to get 18-30 months of little to no pain as long as I stay on Continuous Birth Control to prevent me from Ovulating every month. I will most likely be having surgery this year or next, because it will be two years since my last one in December.
My biggest recommendation for someone who has been newly diagnosed, or to someone who has had the condition for years, is to find a support group or a friend who has the same or similar condition. It doesn’t have to be the typical group, like the one that pops in everyone’s head. It can be one person who understands, maybe a friend or family member who struggles. Or a group on Facebook who deals with PCOS or Endometriosis. This condition is just like any other. You can’t run and hide. You will have times when you need support that in most cases your friends, family and spouse can’t give. Not because they don’t want to, but simply because they haven’t walked that road. The best things we can do for ourself and for others in our place is to find someone who understands the daily struggles, that we can talk to without worrying what they think!! The other thing I always push for with any disease process is to educate yourself. You can’t tell others what’s going on or decide what treatment is best for you if you don’t understand the condition.
Please feel free to share this with anyone you think could use the Information and support.
If you have the time check out the blue hyperlinks throughout the post. They are websites that have good correct information!!