chronic illness

My Endometriosis-Specific Ultrasound

I promise I had no intuition of dropping off the planet the last two weeks nor did I anticipate not finishing out Blogging for Endometriosis the way I had planned. I have spent so much time beating myself up feeling like there was so much more that needed to get done or that I should have been able to get done. I have looked in the mirror more than once and wanted to put a big L on my forehead. But I am trying to show myself grace. The same grace that I would be offering anyone else who was in the same situation and I am allowing myself to fully accept it.

That said, I do apologize for going AWOL on the last half of endo awareness month! 2014 has most definitely not gotten off to a great start and it seems like the more time that passes, the bigger nosedive my health seems to take. Hopefully all of the recent doctors visits, procedures, and consults will lead to a turn around!

Last week, I had my endometriosis-specific ultrasound. From all of the information that was given to me prior to the ultrasound, this is new technology that is currently only being offered in two locations in the US (here in Charlotte and at the Mayo Clinic in Arizona). This type of ultrasound allows endometriosis lesions and implants to be more easily seen during the ultrasound which can aid in diagnosing and treating endometriosis by not only being a non-invasive way to monitor the endo but also helps provide a guide if surgery is necessary by showing where trouble spots are located. To be able to get a clearer picture of what is going on, this ultrasound requires a bowel prep.

This was all of the information given to me before the ultrasound beforehand. I’m not sure if I had just built everything up so much in my head or what but I was completely let down by the experience. Maybe it was because it was brand new technology or because it is only offered so few places but I just went in with the grand idea of what the ultrasound would look like or how detailed the results would be. Honestly, if I hadn’t been told that this was an endometriosis-specific ultrasound, I wouldn’t have known it was different than any other pelvic ultrasound I have had in my doctors office. There were no large implants seen but smaller implants and scar tissue are still not able to be seen so I felt like we were really no better off than we were when we started. I definitely cried but the doctor reassured me that in no way was my pain being discounted and really validated my feelings and my experience. So far both doctors that I have seen at the Women’s Institute have been great.

After reading the ultrasound results and going over my medical history and ops reports, the team would decide which direction they thought would best to treat my case. If they thought surgery would be the best option, they would call to set me up with Dr S. If they thought an alternative treatment option (such as medication, physical therapy, etc) would be the way to go, they would set me up with Dr M (who did my ultrasound). They called yesterday and I will be seeing Dr S on Friday! I’m both anxious and relieved because I finally feel like we are taking a step toward finding relief. I’m not sure what the game plan or time line is but will definitely keep you updated!

In the meantime, I am prepping for my repeat colonoscopy tomorrow! Including this one, I have done four bowel preps in 6 weeks. Not fun. And because my colonoscopy had to be aborted in February because the prep was ineffective, I get to do a double prep for this one. Awesome. I had to drink 2 bottles of magnesium sulfate this morning and have to drink 4 liters of NuLyte between tonight and tomorrow morning. I want to throw up just thinking about it and I have to start drinking in 15 minutes.  I just keep reminding myself that this time tomorrow it will be all done and I shouldn’t have to do another prep for a long, long time! Keeping all fingers and toes crossed!

Tomorrow’s start time is 12pm so if you happen to glance at the clock around lunch say a prayer or send some vibes!

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4 comments on “My Endometriosis-Specific Ultrasound

  1. Bethany says:

    Praying for you today!

    Reply
  2. Sonia Barton says:

    Don’t beat yourself up! you can only do what you can do. crossing all fingers and toes and sending you a little prayer. Feel better.

    Reply
  3. Hope everything is doing well for you. I know that treatment can be difficult, and in terms of personal well-being, this is costly, not only for the woman, but to your family as well. You just have to be strong and I hope that you have your friends and family beside you to support you all the way through your treatment. Most of the women who suffer from this disease, have no means of treating this, and have little awareness about Endometriosis.

    Reply
  4. Emilie says:

    Hope you’re feeling better and that the appointments last week all went well. I know it’s hard not to finish what you’ve set out to do, but I pray you’ll be able to see that you did your best and being sick is never your fault. (Pot calling kettle black here, but I pray it anyway!)

    Sorry your ultrasound wasn’t what it promised. That’s weird that they billed it that way as I’ve heard other women say regular u/s can show large, prominent implants like chocolate cysts on the front of an ovary. One of my docs always comes back to how much of endo is microscopic and even the most skilled surgeon can’t remove what they can’t see, that I would suspect your u/s was similar. But thank you for sharing about this. I live in Seattle, but my in-laws live near Charlotte, and now I know not to try to book an appointment for this thing next time we visit! Hope they improve on this technology sooner rather than later!

    Reply

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