So last night I started having cramping on my lower left side. I have a colonoscopy scheduled for this Friday so I can’t take any NSAIDs. I also have lower back pain in the same exact spot where my abs hurt. The pain ranged between a 4 to a 6 out of 10. All night long.
I have a doctor’s appointment this afternoon just by circumstance with my gynecologist / excision surgeon to discuss an ultrasound from last week. So 2:30 can’t come quick enough. Rather than just update my pain journal, I decided I would draw on my body where the pain is. So some of the marks are from last night and some of the marker marks are from today. I’m absolutely going to pull my pants down in my appointment.
I had a heating pad on all night and it really didn’t do anything.
Today, the pain is in the same area but intensified. It now ranges from a 6 to a 9 out of 10. I decided to go to work thinking I could just pull through, but I was there for half an hour before I realized I needed to go home. I popped two Tylenol before I left, and an hour later, it’s not done a damn thing for the pain.
The pain was so intense while driving home that at one point all I could do was pull over, cry, and scream.
But I’m home now. I have my heating pad on again which I did bring to work but the pain was so intense I couldn’t focus. At least now I’m on my couch in my bathrobe curled into a ball with my heating pad clenched to my abdomen and I’m talking to my phone as it types what I say.
I don’t know what I expect out of today’s appointment. And I really am grateful that this pain is only present one or two days a month while I’m on my period. But I find it ridiculous that all of my pain is on the lower left side and none of it is where my uterus is, so it terrifies me into thinking something is back.
Supposedly the cyst on my left side is shrinking and they do still believe it to be a simple cyst. If that’s the case, explain away my pain. The only thing I have in mind: In the past the endometriosis is super heavy on my left side. So is it back already?
Perhaps today I’ll schedule that long awaited hysterectomy. I don’t want kids at my age. My tubes are already gone. I know it’s not a cure. But if they suspect I have adenomyosis and if I only have pain around my periods maybe it’ll help?
While driving home, after having pulled over to cry and scream because the cramping became too intense, I freaking shouted the words, “I can’t do this anymore.” To nobody. To my steering wheel. To the air. To myself.
Not words of suicidal ideation, but the words of pure desperation that this pain is just too fucking much regardless of the fact that I only get it once every few months if that. I don’t want any more surgeries. I don’t want any more pills. I don’t want any more pain. I shouldn’t have to curl up into a ball clutching my heating pad on the floor at work. Something needs to be done.
But with how bad today is, how bad August was oh, and the fact that I’ve skipped 5 periods this year, something is amiss. I fear I’m going to go in and ask for one more surgery.
August was intense but not as intense as this. I missed a day of work then, too. This! A 9 out of 10, constant, and nothing is helping? Days like today suck.
Maybe it is back. Maybe it isn’t. But I feel like I’m dying today.
Bloomin' Uterus 
Oh friend, I am so, so, SO sorry about this! Is there much worse than unrelenting mystery pain? I’m so glad you have a gyno appointment later today though; hopefully your doc can help somehow.
Considering hysterectomy is no joke, and I’m so sad for you that you’re at that place. At the same time, I COMPLETELY FREAKING UNDERSTAND. That endo is such a maddening disease that we’re willing to try something so radical just for a 50-50 chance of “relief” shouldn’t even be a thing these days.
Many giant hugs (and even more creepy ‘am-I’being-watched?’ vibes) to you. xoxoxo
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I love that you get me on so many levels. Thank you so much.
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I dont even know what to tell you. You have my sympathy… Sending good thoughts your way!
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So sorry you’re having a rough go…this effing disease and the lack of care sucks the big one. Its never an easy decision to have yet another surgery.
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Thank you. I just got home from my appointment. We discussed other options such as Lupron Depot, orilissa, birth control. He knows I don’t want any of those. So rather then just jump into surgery, he’s referring me to pain management to see about maybe trigger point injections are other some type of pain management. Opioids are not an option. Which sucks because tramadol is the only thing that works for me when naproxen doesn’t. I have a follow-up with my doctor in 3 months to see how my pain is doing and then we’ll talk about hysterectomy and another excision surgery if needed, which he’s not opposed to he just wanted to do pain management first. Today has not gotten any easier. I’m not too long drives to and from the doctor have actually made it worse. I’m glad to be back home on my couch with my heating pad and my cats. Tomorrow has to be better.
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When you talk about your past surgeries, what exactly have you had done. I had a hysterectomy in 2015 and had almost 4 years of absolutely no pain. Just had an ablation/excision combo done 4 weeks ago and the endo pain is already back. Feeling so disappointed. Just curious what you have had done…..
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I got a total of 4 excision surgeries, a few cyst removals that saved my ovaries, both of my Fallopian tubes removed, and a bell on resection that remove 7in of Maine tustin’s that were covered in endo.
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Sorry to hear you having a rough time, totally get what you mean about the pain, been at 9 to 10 out 10 for nearly 3 months and last week it was in double figures, I’m signed off work and going through a treatment plan of drug induced menopause which is also messing with me big time. I get the shouting to no one and with the feeling of cant do it anymore just know that you are strong and your still going no matter what and all we can do it’s survive xx
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And survive we will! We are strong, TOGETHER! ❤ Thank you So much for the words of encouragement. I hope they sink in for you, too. ❤
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Thank you xx
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