So, I have a very important question for you, my Readers. I value your input and feedback. I always have. But now I need your advice…
When do you know when it’s time to go back to your doctor and let them know that your pain is returning, that you’re afraid your Endometriosis is back with a vengeance, that it may be time to begin pursuing yet another surgery?
Yet, here I sit afraid that it’s still all in my head. That I’m blowing my pain out of proportion. That I’ve lived without it as intense for months and am now not used to it and am labeling it as large, debilitating pain.
And, as I type that, I know how silly it sounds…because I honestly feel that I’m not blowing it out of proportion. That I upgraded from Naproxen Sodium to Tylenol 3 with Codeine because the pain is getting that much worse. That I sleep with a heating pad on, just so I can try to sleep…and I’m not even on my period (yet). I’m due any day…
These thoughts keep me awake at night. And greet me in the morning.
I have so many things that I WANT to do. I want to plan and enjoy a one-week honeymoon with my husband. I want to go to Burning Man next year (which requires all of my vacation time). I want to visit family in Arizona…but here I sit three-quarters of the way through 2017 and I’ve only got two vacation days to my name. I’ve used up the rest and all of my sick time on calling in with cramps, or taking a fun 3-day weekend here or there to be with my husband and friends. Two vacation days…for the rest of the year.
Definitely not enough for a surgery in 2017. And I don’t want surgery in 2018 because I absolutely want to return to the Desert for two weeks with loved ones.
So I throw my hands up in the air…and analyzed my pain journals for this year. Want to look at them with me? Each month recently, my pain has gotten progressively worse, particularly on the right side…
2017…my pain journal. The red shapes indicate the location of the pain and/or cramping. BM stands for Bowel Movement. GI is gastrointestinal. The #/10 stands for the severity of pain, on a scale of 1-10.
January:
February:
March:
April:
May:
June:
July:
August (thus far…):
If you were me, would you call your doctor and at least request a consult and an ultrasound? And go from there? Or would you just suck it up and continue to pop pills and lose sleep and *hope* it goes away?
I know it won’t go away…it’s not what the disease does…
But I hope it does.
And I want to cry just typing this.
(Updated March 27, 2019)
Bloomin' Uterus 
First, a cyber hug and high five for doing such a great job tracking your symptoms. I track mine too and the past year things got worse so to worked harder to get better. After I passed out for the 2nd month in a row I decided to see a doctor. I realized probiotics make my cysts grow and the doc suspects it aggravates the endo tissue too, so changing up my diet and listening to my body has really helped. Drinking kale juice and eating pumpkin, cutting out bread (that makes me cry) have all helped. All that effort though and guess what? I still get killer cramps and I know this all ends in surgery but I’m not ready. When I’m ready I will schedule the surgery. Listen to your body, trust your gut, be compassionate with yourself and ask “if someone I loved very much were feeling this way what would my best advice be to them?” And then do that. Our own inner wisdom is always right. ❤️
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Thank you so very much. I, too, have been doing my best to follow a stricter diet, cutting out so many things. Observing what makes me feel worse and backing off. I’ve been exercising gently. Doing “all the things” that we’re supposed to. I haven’t tried the more expensive route of acupuncture or supplements because I simply cannot. But, I do what I can. It’s horribly uplifting to know that someone else who is doing all that she can also still gets killer cramps – sorry that you are getting them, but thank you for affirming my situation with your own. ❤ And this…this made me cry, “if someone I loved very much were feeling this way what would my best advice be to them?” Thank you.
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❤️ I love your blog. Helps to know we’re not nuts or alone.
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❤
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I shot my doc an email with my pain tracker and asked if he’d like me to schedule a consult/ultrasound. ❤
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Great job loving you! ❤️
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❤ ❤
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I’m sorry that you’re having problems. However, having all these notes should help your doctor get an idea of what might be wrong. Good job on tracking everything! It’s so vital for women like us to do that.
If lifestyle and dietary changes aren’t helping matters, if it were me then I’d request an ultrasound (and any and all other non-surgical tests too) before jumping back into surgery. Then you can move on from there as needed.
Of course surgery comes with it’s own issues: if your symptoms are from new scar tissue from your September surgery, another lap could make things worse. And then some things surgery just can’t touch: I’ve had nonstop ovary pain for 5.5 years, and surgery has done nothing to help it. So it’s always a gamble.
Whatever you decide, I’m on your side cheering you on! xoxoxoxoxoxoxoxoxo
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Thank you! And thank you for affirming my big fears: it may not be Endo, it could just make matters worse, it may forever be a big unknown. One stop closer and more confident in picking up that phone and making an appointment for an ultrasound. ❤
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I shot him an email with my pain tracker and asked if he’d like me to schedule a consult/ultrasound. ❤
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Keep us posted!
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It’s wonderful to see you are in tune with your body. As you know, most diagnosed with endometriosis =pain. The answer to minimize pain is surgery. The side effects =adhesions,which causes additional problems in the long term! I was on tylenol#3 24/7. I had pain daily,to the point I couldn’t walk. I knew surgery would give me additional problems……which it has. I highly recommend to minimize surgery AT ALL COSTS! 20yrs post hysterectomy, I have nothing but problems. Save your “surgery” for Total hysterectomy w bilateral oopherectomy. Try taking Selenium to minimize the pain intensity. There are so many meds..even non narcotics to minimize the pain ex Elavil. Look at ALL alternatives besides surgery!
Choose wisely, do your research…..God bless
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Thanks, Nanette! I go in on 9/25 for my consult to discuss options. I’ll ask about the total hysterectomy with bilateral ooph, too. It’s been on my mind lately…
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