I should be on display at Ripley's Believ... - Endometriosis UK

Endometriosis UK

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I should be on display at Ripley's Believe it or Not....

13 Replies

I had surgery last year to diagnose and remove endo, and had my right tube and ovary removed at the same time. I still had bad pains after the surgery, it felt like nothing was done. So I just had another surgery on April 15th 2015. I had a complete hysterectomy and removal of the left fallopian tube. I had my 2 week follow up today and found out............ my right ovary grew back!!! Say what?!!! No wonder I was miserable. On top of the endo growing back in that area (other places too, I should be so lucky if it was in only one spot), I also regenerated my own ovary. It grew it's bad little self to my uterus wall, and looked to me like the size of a dum dum lollipop with it's wrapper still on. Like legit looks and acts like a normal ovary. I didn't believe my doctor, so I looked it up. It is a true thing. It's called "Ovarian Remnant Syndrome". I guess it is more common with endo sufferers. And it wasn't caught with my recent ultrasound because we all thought there was a need if the ovary and tube were gone. Just thought I would share this weirdness that is our bodies.

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13 Replies
moomoo8 profile image
moomoo8

I believe it happens because they messed up, or didn't properly remove it all in the first place!

centerforendometriosiscare....

in reply tomoomoo8

Yeah I agree. But you'd THINK they would warn you about the fact that they had an issue to begin with! Like "Hey by the way, you had endo around your ovary that was difficult to remove. And because of this, one of the possibilities that can happen is .....". Instead my OBGYN was all like "I burned the endo and removed the ovary. You will be pain free now. "

moomoo8 profile image
moomoo8 in reply to

Maybe it is more likely to happen if they burn rather than Excise Endo as burning doesn't fully remove the disease. I hope that you will now get some relief after this surgery.

Yazza profile image
Yazza

Thanks for sharing. X

Brownlow profile image
Brownlow

I agree with Purple7. I'm really sorry to hear this Aardvarklips. What do they propose to do?

in reply toBrownlow

She removed it at the time of my surgery. And she never even told my mom what strangeness that she found! You'd think that would be mentioned, as my right side was my worst anyways. And the only reason I found out was that I told her it felt like she did something inside where my ovary was. She said she removed the endo and the regrown ovary. I thought this was something so strange that i HAD to mention it here at this site. That way other women know that this is a possibility.

Brownlow profile image
Brownlow in reply to

Thanks for sharing. How is your recovery going? I hope you are well and feeling stronger every day. x

in reply toBrownlow

Ugh, some hours I am fabulous, and some hours I feel as though I was stabbed and burned. Which I guess technically I was. ;) My dr. said I am doing well compared to other ladies in the recovery process. What kills me is that my best friend's mom had a total hysterectomy (ovaries and tubes included) and her lymph nodes removed due to cancer, and she is doing fabulous on day 2!! Like "oh i merely hurt, but I still want to go do things". I felt like death warmed over and here she is prancing about. Shoot, some days I still feel like death warmed over. On the whole I would say I am ok. It's no different then endo days really. If I over do myself one day, I pay for it the next. I even told the dr. that I barely use any pain pills after she asked me if I needed a refill. She looks at my like what? I told her that after these past years of intense daily pain, this pain wasn't anything I wasn't used to. Then I got to thinking.......WOW!! If this is surgery pain and it feels EXACTLY like my endo pain, then that means we are essentially having post op surgery pain (or after surgery pain for the dreaded killer flare up days) all the time without painkillers!!!! Maybe that is how I will start describing my pain to others now. "Imagine coming out of surgery with no painkillers.......all day long." :D

Brownlow profile image
Brownlow in reply to

That's a good description of endo pain! Your surgeon doesn't cut it with me I'm afraid (forgive the pun!) If I remember correctly, you're in the US otherwise I'd be yelling about getting an accredited endo specialist like we're always going on about on this board! If this op does not resolve your endo issues please go to another doctor!

I'm not a fan of endless painkillers but taking something would at least give your body a break and a chance to recover maybe? Just remember, everyone is different and your op was quite different to that of your friend's Mum.

You take it very easy and don't run before you can walk. Give yourself the time you need to recover. That's an order from Brownlow. x

in reply toBrownlow

I would love a credited endo doctor, but I can't afford one. Even with my insurance. My plan is to work at one of the hospitals or their off center sites as a receptionist or something, so that I get on THEIR insurance which they cover THEIR doctors. :D All of my surgeries for the past 3 years have been free to me because I work at the hospital that my obgyn belongs to. I tried to go to the specialist in Cleveland Ohio (closest one to me) and my insurance paid a percentage of the visit. I still owed $200+ just to SEE the specialist. And it turned out, it was the wrong doctor, the receptionist screwed up the appt. So here I owed this large amount of money, and it wasn't even the right doctor!!!

in reply to

Oh, and I have broken down a couple of days and taken pain pills. Usually my mom yells at me to take something because she can see it in my face that i hurt more then usual.

Brownlow profile image
Brownlow in reply to

Good plan. I hope you don't have to resort to surgery again. Have you ever tried more 'natural' complimentary methods? I really rate this woman's site peacewithendo.com She was in a really bad endo situation but has gradually brought it all under control and she has a book out too. Worth a read.

in reply toBrownlow

I'll look into that. I have tried so many things that unfortunately don't help me. I hope no surgery either. Or at least let me get a few years of peace between surgeries. ;)

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