Adeno and Post-Hyst Pain: Does Anyone w/Adeno Still Have "Midline Pain" After a Hyst? - Page 2 | HysterSisters
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Adeno and Post-Hyst Pain: Does Anyone w/Adeno Still Have "Midline Pain" After a Hyst? Adeno and Post-Hyst Pain: Does Anyone w/Adeno Still Have "Midline Pain" After a Hyst?

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  #11  
Unread 02-12-2004, 06:23 AM
Adeno and Post-Hyst Pain: Does Anyone w/Adeno Still Have "Midline Pain" After a Hyst?

Hannah,

Only you know what's best for you and your body. And you'll know when it's time to say enough is enough, and you'll agree to that hysterectomy. And I'm not saying that you won't have emotional side efects, after all it's a life changing surgery.

I am one of those who still have pain. Pelvic: midline, and right where my ovaries used to be. Though I knew i had endo (and in fact I still do) the adenomyosis was a surprise, they told me they don't know how I ever conceived my first child, the adeno was so bad the entire uterus was lumpy. But I had all the classic symptoms.

Anyway, some people find a hyst has cured their female troubles. And you'll see here that some have found otherwise.

I wish you the best of luck in your journey. Please feel free to post your questions and concerns here, you'll find tons of friendship and support.

Good luck, and you're in my thoughts and prayers. I've been following your posts, as I feel when I read your stories, that you're talking about me!



Laura
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  #12  
Unread 02-12-2004, 02:05 PM
Adeno

Hi I've used this site since aug 03 when i had my hyster and recommended it to everybody but i have never posted but something about this made me have to.
i had surgery on 8/03 for heavy bleeding my hemog had steadily dropped for the last 6 months until it was around 8-9 at time of hyster. i hd a vag and left my 1 overy since i had the other one removed 12 years ago.

when results came back all i had was admeno NO endo. I was still tired for the next 3 months but now I FEEL GREAT i REALLy could not feel any better the funny thing was i knew i was oh so tired before surgery but i really did not know how BAD i felt
this has been the best thing i ever did in fact i would do it all over tonight if i had to.

i just wanted to let you know some really POSTIVE things about admeno and surgery hope it helps you
  #13  
Unread 02-12-2004, 03:35 PM
Thanks for your replies - all are very helpful

Lenew, I am glad you saw this thread and decided to post after all. It is great to hear that you've benefited from the surgery. Becoming that anemic must have been scary; it must be a true relief to have that terrible bleeding stopped and get your life back. Did you have cramping along with the D.U.B. that the adeno caused? Off hormones, my periods were heavy, but I never had and D.U.B. except for the premenstrual spotting associated with endo.

And Laura, I'm SO sorry to hear that you're still looking for an answer. I dearly hope you will find an end to the pain sometime soon. Thanks for the good words about my posts! I'd been hoping to write them in a way people can identify with.

I appreciate hearing everyone's experiences; every little bit helps.

With ((HUGS)) and painfree wishes,

Hannah
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  #14  
Unread 02-13-2004, 12:30 AM
Adeno and Post-Hyst Pain: Does Anyone w/Adeno Still Have "Midline Pain" After a Hyst?

Hannah:

I had stage IV endo (everything was fused to everything else, including the giant endometrioma) and severe adeno.

Although I do still have some problems, likely due to adhesion formation (since the inflammatory conditions in the pelvic cavity that encourage endo also encourage adhesions), I can honestly say that my pain is improved. Getting rid of the DUB (since, like Lenew, I was seriously anemic) helped a great deal in my overall health; not having my insides feel like wet toilet paper, friable and about to break, two weeks every month also is a huge improvement.

So, is life perfect? No, not by a long shot -- but getting rid of as much endo as possible (since it also creates its own inflammation) has helped, taking my pain and misery from a ten two weeks out of the month to a three or four most days. A side benefit, for me: I had horrible PMS, major mental breakdowns on a monthly basis. Going estrogen-free wasn't easy for those first months, but my moods were the best they'd been since I turned 13 and had my first period!

(((Hannah))): Of course, no one can make this decision for you, nor can any of us predict how things will go once your decision is made. There are times when I honestly consider myself "lucky" -- since we thought cancer was the issue, there really wasn't a choice, you know?

I've lived with this sort of pain for years; probably lost several years, overall, in terms of productivity. With an ectopic pregnancy, it nearly cost my life; and the ongoing inflammatory/auto-immune issues led to such severe pre-eclampsia that both my DD and I nearly died -- again. Having that much endo in my body, later (since it returned, with a vengeance and with its cousin adeno in tow, once I'd weaned my daughter), caused a lot more than "just" pain. The overall inflammation and anemia were taking a toll; it's just that I was so used to living with it that I didn't notice until it was gone.

Yes, I do still have pain. I'd be the last person to say that this is the "best thing I ever did." But I got an improvement in some aspects of my health, and for me, right now, it's enough. Of course, I've been quite lucky: no real sexual side effects (as long as I keep up my vaginal estrogen) and no major complications. I will need another surgery for adhesion lysis sooner or later, but I can live with that. And there have been other complications, but nothing like walking around with a constant hemoglobin of 8 and major inflammation going on all the time.

This isn't really an answer, I know, and may not be particularly helpful to you. But if I'd actually had a choice, knowing what I do now? I guess I'd have to say I would choose it again. I still deal with other auto-immune problems (but nothing new there anyway), but I think getting rid of a major inflammation source has improved things -- for me.

(though I know that's really not enough)...

Audrey
  #15  
Unread 02-15-2004, 09:17 AM
Audrey, thank you so much for your input...

I feel terrible for the scare you had to go through. No one should have to suffer like that! I'm glad to know that your surgery has offered some improvement - yet very sorry to hear that you still struggle with pain. In your place, I would certainly have done the same. Anemia is not something to let continue. When your health is clearly at stake, the options narrow down to nil.

My situation is not nearly so clear-cut. That's what makes it so difficult. Not that I want a dire, urgent reason for a hyst, in the least. I'm just saying that adeno is, right now, an "academic" result of two MRIs. The signs and symptoms aren't there; I have not, nor have I ever been, anemic, despite years of long, heavy periods. My uterus isn't enlarged, nor is it "boggy." Some doctors believe the films offer enough evidence on which to go through with a hyst; others say the finding is incidental, as it is in many women who undergo hysts for other reasons, where adeno is a surprise dx in the pathology report. My surgeon's recent recommendation to consider a hyst isn't even based on my having adeno. In his experience, women who've benefited from PSN surgery can obtain further benefit from a hyst, merely because he severs more nerves from the same "plexus" as the PSN, in the process. (As my pain worsens again, I question whether I have, in fact, obtained much benefit from the PSN at all....)

Your answer IS helpful - thank you so much for taking the time to reply to this thread. I have lots and lots to think about....

Sending ((HUGS)) and wishing you many painfree days....

Hannah
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