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What does adenomyosis feel like?
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05-23-2011, 01:34 PM
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HysterSister
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Posts: 170
Hysterectomy: July 26th, 2011
Surgery Type: LSH
Ovaries: Kept 1 or both
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What does adenomyosis feel like?
Hi,
I've had pain for 3 month at old c-section area. Doctors have had no idea what it is. Seen 4 so far. Last week I was diagnosed with celiac. Now I have to eat wheat free. The gastro Dr. thinks broblem solved. Ob said to come back in a month if still in pain. I'm sure the pain is something else. Did you do anything special to get Dr.s to listen. So frustrated. The ob said I may have adeno and to research it. Can anyone describe what adeno feels like. I have no bleeding, just lots of pain. Exercise makes it worse.
Ideas would be so appreciated. I usually sleep 1-3 hours due to pain. I have 2 little kids. Need to be free of the pain. Thanks so much.
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05-23-2011, 01:59 PM
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Posts: 36,890
Hysterectomy: November 14th, 2000
Surgery Type: LAVH
Ovaries: Kept 1 or both
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Re: What dos adenomyosis feel like?
We do have some information on adenomyosis so I hope it will be helpful for you! Here is a link that will take you to that section of our Resource Database: https://www.hystersisters.com/vb2/lin...o=browse&cid=6
The adenomyosis information is grouped with our endometriosis resources but the two are not the same condition or even related to each other (though doctors thought so in the past). However, you might want to read through a bit of the endometriosis links and see if any of your symptoms might also sound like endometriosis.
Because the only way to definitely diagnose both adenomyosis and endometriosis is surgery, I would suggest that you start keeping a very detailed symptom diary. This can help you and your doctors figure out what might be going on. Because you may have a Celiac issue, you should also keep detailed notes about what you eat and if any specific foods affect your symptoms.
Being able to "show" your doctors what you are going through can help them listen to you better. It can also be helpful to take someone with you to your appointments who can reiterate how your life is being affected by your pain.
If you would like, here is a link to an online symptom diary that can help you learn what types of details to keep track of: https://www.hystersisters.com/vb2/lin...=jump&lid=1832
It may take some time, but keep working with your doctors to find a solution that will allow you to feel your best! Don't hesitate to post any questions or concerns you may have and we will all do our best to answer them based on our own research and experiences!
I didn't have adenomyosis but I am diagnosed with endometriosis which can cause a lot of pelvic pain in various areas of the pelvic region. For me, it also caused bleeding issues pre hysterectomy and bowel issues pre and post hysterectomy. Using a symptom diary was helpful for me and I finally found relief with surgery by an endometriosis specialist.
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05-23-2011, 04:41 PM
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HysterSister
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Posts: 468
Hysterectomy: June 2nd, 2011
Surgery Type: TAH
Ovaries: Kept 1 or both
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Re: What dos adenomyosis feel like?
For me my pain varies. I get different pains throughout the month. Mine started with tummy tenderness. I get sharp stabbing pains that feel like they are shooting around my bowel area, and also on one side of my uterus. As my uterus has grown the paun has gotten higher. I have terrible cramping for a few days around ovulation, and now my periods last 8-9 days and I have mild labour like cramping the whole time. The worst part for me is the back pain. I've gone from being able to do some sort of activity for 15 mins from when I started getting back pain to 5 minutes. It is excruciating.
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05-23-2011, 04:43 PM
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HysterSister
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Posts: 468
Hysterectomy: June 2nd, 2011
Surgery Type: TAH
Ovaries: Kept 1 or both
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Re: What dos adenomyosis feel like?
I forgot to add. While a lot of people have heavy bleeding not everyone does.
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05-28-2011, 08:49 AM
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HysterSister
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Posts: 63
Hysterectomy: April 12th, 2011
Surgery Type: DvH
Ovaries: Kept 1 or both
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Re: What dos adenomyosis feel like?
Like you alot of pain was centered at my c section scar, cat on the ceiling reaction if someone bumped it when pmsing but a few days after I stopped bleeding the pain eased up. Then came chronic lower back pain, worse when ovulating and some times felt like labor pains in my back. Also sharp shooting pains in my groin. My periods were not heavy but I did spot after for days but not until 4months pre op.
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05-30-2011, 05:06 PM
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HysterSister
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Posts: 82
Hysterectomy: June 14th, 2011
Ovaries: Kept 1 or both
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Re: What does adenomyosis feel like?
My pain is just a dull, extremely heavy and hot or burning kind of sensation from c/s scar and lower. My tummy is also extremely bloated. Those feelings last 2-3 weeks out of the month. When I get my period, it's like labor pains with some stabbing pains. Then there's the ovary pain...but that's a separate issue.
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06-01-2011, 08:01 PM
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HysterSister
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Posts: 77
Hysterectomy: October 25th, 2011
Ovaries: Undecided
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Re: What does adenomyosis feel like?
I went to a IR MD today for a consult on my MRI for fibroids and she spotted my adenomyosis. She describe it as little fingers that grab onto the uterus. The worst symptoms I have been having is bloating and pain on my left side. She said the UFE will take care of it along with the fibroids. I have a scar from a myomectomy, I've been around the fibroid block before, and I can sometimes get a creepy feeling like I can feel my incision being cut, but it's not a sharp pain. Maybe, it's all in my mind. Still trying to decide what to do.
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