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Chronic cyster here but Dr says remove uterus ?! Chronic cyster here but Dr says remove uterus ?!

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Unread 02-14-2016, 07:43 AM
Chronic cyster here but Dr says remove uterus ?!

Hi everyone.

I'll make my story as short as possible.
At 17 they discovered I had a cyst so I was put on birth control to try to shrink it. It didn't work but wasn't big enough for drs to remove it.
Fast forward to 23, cyst grew even larger and then twisted my fallopian tubes.
Had open abdominal surgery to remove it, turned out it was a paratubal cyst all along. Continued to grow large and complex cysts through the last 9 years.
I also always had very painful periods. Like heating pad, don't move, take as many Tylenol as you can (usually more) and wait it out.
My flow was never terribly heavy but started weird around 29 and then I had the mirena inserted and a d & c which helped the flow but not the cysts.
My mother had ovarian cancer at 50.
She does not have the brca gene.
I had an 8 cm complex cyst which led me to the same Dr my mom had. After nearly 2 hours of talking and exams, he thinks my uterus needs to go along with my fallopian tubes.
He would take my ovaries if I wanted due to the chronic cyst making and pain but I'm not sure at 32 that I'm ready to give those up. (I get VERY sick on BC so taking hormones is not something I want to do. I have a lupus like disease (auto immune) so I'm barely tolerating the meds for that)
But he asked if sex hurts. I said, oh yeah. He said for how long?
I said often into the next day. My belly feels like it was ran over. Sometimes walking hurts and I will be on the heating pad into the night.
He said, that's not normal.
So here we are, ready to remove my uterus in hopes of it alleviating some pain but likely not all of it. He said in a couple of years I can get my ovaries out if I'm still in pain.
I was never diagnosed with endometriosis and he straight up said, he may find nothing when he goes in.
I have had chronic pain on my right side for about 3 years now that comes and goes with no explanation. I would go to the Dr sure I had a cyst only to be told nope, nothing is there.
After the exam this Dr gave me (he thinks the cyst on my left side is now gone) , which was so painful, I was sore and having sharp pains two days later.
I also get tingling on my right side when I'm trying to also on my left
I'm so nervous he will find nothing and my uterus will be removed for nothing.
Any have a similar experience?
Was pain from sex really from your uterus and not ovaries?
Thank you all so much.
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Unread 02-14-2016, 01:23 PM
Re: Chronic cyster here but Dr says remove uterus ?!

Hi Pavoneamare to HysterSisters!

I am so sorry you are going through all of this, but so glad you found this site.

You are young to be having this surgery. Having a hysterectomy has to be considered very carefully - it is MAJOR SURGERY. You have to weigh the pros and cons with your current health situation. You may want to get alternate opinions, as you may have other options. Here are articles that may help:
5 Reasons to Seek a Second Opinion
Do I Need a Second Opinion for My Hysterectomy?
4 Reasons to Have a Hysterectomy
6 Reasons to Keep Your Ovaries during Your Hysterectomy

Consider all your options very carefully, and make the right decision for you. Just know that you are not alone in this. We are here for you.


Our Free Booklet
What 350,000 Women Know About Hysterectomy: Information, helpful hints as you prepare and recover from hysterectomy.
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