I’m in Pain all the Time
I have had terrible cramps ever since my period started. Not just take two Advil and it gets better type of pain, but curled up in a ball crying type of pain. It was hard to get through the school day as a teenager and I’d come home just to put my heating pad on and cry myself to sleep. I did tell my gynecologist and he told me that all girls get cramps and I would be fine. He kind of shrugged me off and I began to think I was crazy. I mean if other girls could deal with this pain why couldn’t I? Was I just making a big deal out of nothing?
There’s a phrase – “pain is relative”. Basically pain is subjective; what is painful to one person may not be painful to another person. I saw more doctors and when I complained about my pain you could tell they either didn’t believe me or didn’t care. I was told to take Advil and use a heating pad. I had one doctor tell me I just needed to take magnesium. I had asked him for something stronger than Advil for my cramps and he told me that he doesn’t prescribe stuff for cramps. I just had a low pain tolerance. I knew I hurt and now I was in pain and felt weak.
I had gone to the doctor in my early 20’s for a urinary tract infection. The doctor tapped on my low back (on my kidneys) and they were tender. I can’t really remember what made her suspicious, but long story short I had kidney stones. Yes, stones plural. I had three of them and that led to my first lithotripsy. I honestly didn’t think it hurt that bad. Looking back that should have been a clue to my pain tolerance. I hear people saying kidney stones are super painful and the worst pain they’ve ever had. It hurt, but it was by no means overwhelmingly painful. I have had several stones and none of them have been unbearable.
Maybe that’s because my daily pain is worse. I know this picture is a little gross, but it is so accurate.
My insides feel like there are hot knives twisting in them all. the. time.
It’s unbearable. From the moment I wake up until I go to bed it is excruciating. It even wakes me up from sleeping it hurts so bad.
I have endometriosis. This means there is a lining type growth going on in my body and it’s like concrete fusing my organs together. It’s awful! And I am 1 in 10. Endometriosis affects 1 in 10 women. That’s over 176 million women! And did you know many go undiagnosed? I did for about 20 years. It wasn’t until I found a doctor that listened to me and didn’t stop until he figured out why I hurt so much.
This picture is right before my last surgery which wasn’t even a full year ago and it hurts again. It actually hurts even more. I am happy to say I have an appointment with a specialist in about a week and I am so excited to start this road of recovery.
Beyond the physical pain there is a frustration. It seems like hardly anyone understands endometriosis and it affects millions of women!
How crazy are those stats above? If you know two dozen women you know someone who has endometriosis (and I’m betting you know many more than one). This is a disease that is causing pain to millions of women and we need to do better.
So why I am I writing about my pain? I want my voice to be heard and I want to speak for those girls and women who are in pain and still have no answers. I hope that as I write about endometriosis it will cause others to be aware and hopefully one day we’ll have more answers.
Do you think you might have endometriosis? Here are some great places to start:
Glenna Atkinson says
Thank you, Donna. Praying for things to get better. Thank you for sharing this.
Debra Holloway says
My heart goes out to you. Would a hysterectomy help your condition?
Thank you! I’m actually going in for a partial hysterectomy and deep excision of the endometriosis on Wednesday. I’m hoping that will help a lot.
Sarah L says
Those statistics about the number of women vs the amount of money going into research: SKEWED (or screwed up perhaps.) Makes me sad to see it.
Screwed up for sure 😉
Cynthia C says
I had no idea endometriosis was so widespread.
I am unable to say I feel your pain, with experience, for my pain is known from a condition thats known as RSD / CRPS! But I send you that of the best of hopes to recovery!
Linda Manns Linneman says
As a nurse, I know endometriosis is very painful. I did not realize it affected so many women. I think physicians need to start listening more to their patients. I will be praying for you. God Bless
Dana Rodriguez says
I don’t have this but it sounds horrible. I hope you can get relief soon.
Bonnie Lee says
Wow. Keep strong! I didn’t know about this so it is good to know.
ROCHELLE HAYNES says
I have a lot of pain too old age pain
Val - Corn, Beans, Pigs & Kids says
I love that you are sharing about this! Hopefully more women will become aware of what endometriosis is and that you can help someone get a proper diagnosis sooner. Good luck at your next appointment!
I also have had endometriosis. Several years ago I had a surgery to clean it all out. They also removed several large cysts, my uterus, phyliopian tubes, and ovaries. It was one of the most painful surgeries I’ve ever had. Glad to say I have been doing well since. Hope for an answer for you, soon. Love shelly.
Laura Weers says
A lot of Doctors do not really take time to address our disease or listen to us.
God bless you !
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.
Rhonda True says
Donna, I took care of more women diagnosed with that painful condition than I care to count. Most of these gals also suffered long before they were diagnosed and were frustrated. I so wish for a cure and yes it is extremely underfunded! Good article but sad to see it is a part of your life!
Laura Mae says
I have polycycstic ovaries…they removed one. By the time I had my hysterectomy 2 months ago, I also had the some endometrosis too. That was probably what started to make my pain unbearable. I hope you find answers Donna. You deserve comfort!