I have Endometriosis
From the time I was 16 years old I’ve I’ve had pains in my sides. I’ll never forget the first time I had the bad pain. I was in a school play and it started in the first act. By the time we hit intermission I was in so much pain I was crying and begged my mom to take me to the hospital. It kind of wrecked my drama career and it was the start of one misdiagnosis after another.
When we got to the hospital I was told that it was a ruptured cyst, told to take some ibuprofen, use the heating pad and rest. I had many more cysts and ruptured cysts over the years and the pain just increased.
I went through several gynecologists and every time that I told them I was having terrible cramps with my period their answer was pretty standard – take ibuprofen, use a heating pad, and rest. I was told that all girls have cramps and I was making a big deal. I honestly didn’t know why all these other girls could deal with cramps and I couldn’t. I mean it’s brutal. It feels like a stinging hot knife that just twists and cuts. It’s excruciating.
I just learned to suck it up and get on with life. I hurt, sucked it in, and cried myself to sleep at night.
My periods have never been normal. My cycles lasts anywhere from 17 days to 40 and my period is never normal. It’s heavy and painful. I’ve been married for almost 12 years and we have struggled to have kids. My second infertility specialist was the first doctor to listen to me and take my pain seriously. He asked me questions and actually listened to what I said. He did some exploratory surgery and found that I had endometriosis.
So now I had a name for what has been giving me pain – but what is endometriosis?
Endometriosis occurs when tissue that acts a lot like the lining of your uterus—called endometrium—starts growing outside of your uterus, where it doesn’t belong.
These out-of-place growths, called lesions or implants, can cause severe pain and inflammation throughout the month.
That’s the medical answer and as I’ve been reading more in The Doctor will See You Now it’s also the reason I have tummy issues, back problems, and extreme exhaustion. In fact, I have found myself in tears reading this book because someone finally understands what I’m going through. I am not crazy and it’s not all in my head.
I also joined a Facebook group run by Nancy Petersen. Nancy is an endometriosis advocate. She has a whole group dedicated to education and connecting women to better care. It was in her group that I found an endometriosis specialist. In fact, I have my first consultation on April 9th.
And yes, I’ll be blogging about my journey. Why? Because endometriosis affects 1 in 10 women and hardly anyone understands it or talks about. That’s millions and millions of women. Something that affects millions of people is something we should be talking about and learning more about.
I’m nervous and excited about my appointment in April. I am not sure what to expect or what my future holds, but I’m so excited that I am on the path to getting help.
I was not aware that endometriosis was so prevalent. No one should have to suffer through alone.
It always helps to have someone that you can talk to thats been thru the same ordeal; in my prayers
I worked many years for an OB/GYN. I’ve seen many woman suffer as you do. I hope you find someone who can help you get some relief.
It takes the average woman 10 years to get diagnosed from when she first seeks help. It took me 19 years. My story was similar in that all my docs said it was normal. It wasn”t until my late 30s when I had surgery to remove two large cysts that it was discovered that I had stage 4 endo. I”ve felt cysts rupture (horrendous pain) and experienced the burn that stops you dead in your tracks. There is a lot more that can accompany endometriosis than just pain such as anxiety, hormonal issues, menstrual irregularity, and fertility issues to name a few. A lifesaver for me was CBD hemp oil. I only wish I had discovered it when I was younger and not after my surgery. The only way to diagnose endometriosis is through surgery as you know. The only cure for endometriosis well but isn”t a 100% cure but finding a good excision surgeon who specializes in endometriosis is a great way to go 4 strong results of being Endo free for a long time.
Stay strong, be well, take care! That’s all that we wish
My mom suffered from endometriosis and when she had colon cancer, she thought it was simply the endometriosis pain!
I’m so excited you are seeing that specialist. And hugs to you for suffering with this for so long.
I know this has been a struggle for a long time and I’m so happy you are finally getting some answers! I’ll be thinking of you when you have your appointment next month!
Thank you for sharing your story, Donna. My mom had endometriosis and I have had symptoms of it as well, which worries me because I know there is a genetic link to endo.
If you ever need to chat let me know. Reading “The Doctor will See you Now” really helps with information.
Cheers, hugs and prayers to you Donna! I’m happy to hear you have found some answers and my fingers will be crossed for your future.
That’s brave and so great for you to speak up about an area of Medicine that is so difficult to understand and yet probably impacts so many young females. As a general practitioner (family physician) I know that endometriosis is not something that is spoken about much and probably some general practitioners do not keep on their radars enough. The problem being is that endometriosis doesn’t kill people physically (while it might kill people mentally).
The good thing to know is that if you have it there are things that can be done and a good team including a and an obstetrician / gynecologist along with a supportive community and family can go a long way to helping those unfortunate enough to suffer with this condition. What I’d really like to one day be able to answer is “What causes endometriosis and can we prevent it”, because if there is something we can do to prevent others from having to go through the same suffering than #letsdoit #stopthesuffering
PS: If I had a kindle.. I would put it in my waiting room with information about endometriosis and other health conditioners that are common but spoken little about.
I’d love to know the answer to that too! I’m hoping for now though to raise awareness so that at least more people begin to understand it.
So happy you’re finding answers. I cannot even begin to imagine the pain in which you’ve found yourself! Good luck my friend on your journey. May things only improve!!
I’m so happy you decided to start writing about it now! I’m also so happy you are getting some answers and hopefully relief soon! Sending hugs to you!
I am so glad you have found someone who understands and can offer some real help. I have several friends who have endometriosis and it is a horrible thing to have to endure. Praying for you!!!