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

Cramping, I should say. I've had so many of the treatments, medications, and therapies that Sisters have taken/gone through post-hyst, on the Road; my being pre-op is circumstantial.

But the one surgeon I trust - who performed my PSN - has recently suggested a hyst might help me. Of course, he offers no guarantees. So I would like to hear the experiences of people I trust far more - the women who've been on this painful Road for years on end.

Am I correct to assume that most Sisters who've had a hyst for adeno ONLY - no endo - do especially well? Or, to put it another way, does adding endo to any other condition always make pain relief from a hyst more chancy?

I realize that I could have posted this inquiry on the Pre-Op Board; please let me keep it here, though. While some there might be in the same boat as I am, no one there will have had the experience to share.

Thanks to everyone for all their help.

Hannah

Dear ((((Hannah))))

I am not 'qualified' to answer your questions, as I too am an Endo gal (suspected Adeno - neg path post hyst) but wanted to post here to say that I will be very interested to read what kind of responses you receive here.

I can say that I did have my Hyst in Nov/00 for Endo, and am still dealing with chronic ab pain. My docs have given me many dx's, but I suspect Endo or perhaps ORS is involved. Things move very slowly up here...But another lap is probably in the cards for me at some point (once I decide that I want to go through that again, but more importantly, once I find a Gyn that I feel comfortable doing it).

I will follow this thread with great interest. I too suspect that women with Endo (or adhesions) tend to be the ones who have pain post op.

Take Care dear friend S

I know that adeno is one of the most vexing diagnoses out there; no one can be sure about it, it seems. But given the films I had taken and the same thing popping up on both, I sure have something in there - whether it's adeno or not, only a pathologist will know for sure.

This is the question I lie awake at night pondering, so I finally thought, why not just ask it? I've read so many doctors' sites saying that "the only definitive cure is a hysterectomy." Cured b/c the disease is literally out of you, or b/c the pain is gone? It's exactly like a story I once read about a woman who had breast implants....her surgeon told her "They'll feel 100% natural." Months after the surgery, she still can't get used to the weight on her chest, the hardening scar tissue, etc. She asks her surgeon, "When will they start to feel natural?" The surgeon replies, "I meant, they'd feel natural to the TOUCH, not necessarily to you." Makes you want to ask lots of questions, hmm?

I, too, will be passing by my computer much more often than usual to see if any Sisters have shared their experience and wisdom with us....

Talk to you later, my dear!

Hannah

Hi Hannah,

I am sorry we are still meeting here , but always nice to talk with you. I had severe pain from only adenomyosis pre-hyst. Post-hyst the pain was gone at the 6 month point -- I would note that it took longer for me than many for that pain to go away, in fact it was really hard to tell for several months if the surgery really worked. And then the pain was gone. I visit often on the Road because of other chronic conditions (in part some other worrisome symptoms that started from treatments for the chronic pain before the hyst ...) and that the company is the kindest, best support anywhere! But the hyst cured my chronic, severe pelvic pain, and they found adenomyosis and really nothing else that could have been causing it (no endo to speak of) when the pathology was in and during any of my exploratory scopes.

I wish you luck with your decisions and treatment, as always.
With love,
Loretta

Hi Ladies!

I had both so not sure I will be helpful.... and my doctor thought he had all the endo when I had my hyst but I still had some there hiding... In fact, even the Mayo Gyn/Onc did not recognize it as endo at first and thought it was ovarian remnant imbedded in the muscle wall... but the path came back as cystic endo with no ovarian cells present.

There are no garuantees. I had a hyst, had adeno all over and still had pain after the hyst (though not having the period and those complications was very helpful).... Loretta had adeno, had the PSN with NO relief and then the hyst was a huge relief. I think at some point you have to go with what the doctor thinks is best (which I think other doctors have said too) and trust that ... and realize there are no garuantees but the odds are definately in your favor that it will probably be helpful even if it isn't complete.... which you may never find unfortunately... and that is what I have been told since I have had pain for so long.

Wouldn't it be nice to just say to yourself... I really trust this doctor and I am not going to spend any more precious energy worrying and wondering if or if not.... I will deal with that after the fact... and remember you can be in charge of your attitude afterwards too.

Bets of luck! I know it has been difficult for you.


Sarah

There is so much wisdom to be absorbed from all the precious information you've shared. It would, for sure, be a relief to do as Sarah has suggested and decide simply to trust someone, finally. I have a problem doing this. Besides being genetically disposed to wavering on decisions and then regretting the ones that have not panned out, I also find it hard to trust what doctors say. Even good ones. After all, the first time I was wracked with this pain, at age 10, I heard my pediatrician tell my mother (I had an ear to his office door, after he'd examined then shooed me out) that my pain was very likely due to my "not wanting to grow up and accept becoming a woman." Yes, that was still a prevalent belief in 1974! It was traumatizing when my mother, whom I knew suffered at least as much as I did, failed to contradict him - after all, she knew the truth. But back then you didn't contradict authority figures, friend or not.

I realize that we must live in the present and do our best with what we know at the present. Still, the person who knows me best, dearest DH, worries that I'd be impossible to live with if I go through yet another less-than-optimal surgery. This is not the comment of an impatient or overbearing man - he's right. It's the way I'm made; I'm not a risk-taker. You'll never hear me utter the phrases, "It is what it is," nor "Oh well, I did my best." Not me - each step I take merits not only a glance backward but a thorough analysis of whether that step was warranted. So, I may not be able to forgive myself if things don't turn out well.

The good news is that, if I can get over the hump and follow someone's advice after all, the doctor hunt is over - I trust the surgeon who performed my PSN implicitly, and the care at his hospital was top-notch. Who knows, perhaps the solution will make itself obvious to me one day.

Thanks again, everyone!

Painfree wishes and ((HUGS)),

Hannah

Dear Hannah...
Just remember that you can change the way you react to things... you really can... you do not have to leave it up to how your past was scripted... I don't know if you have ever read "7 habits of highly effective people" by Steve Covey... and there are a variety of similiar themes by other people. It was a life saver to me... his first habit is BE PROACTIVE.... it took me a long time to really get what he was saying... but he says the first thing one must learn.. to become a habit in life.... is to learn to take charge of how you react to things, to not let your past be an excuse for never changing to a way that is more effective and moves you forward. This was an absolute life changing moment for me and I have written about it before on HS about how empowering being proactive has been for me. This was when I decided I was going to try to carry a postive, constructive, realistic, and hopeful attitude about my pain problem... which I think I have mentioned many times before...and how helpful that has been in coping with my pain problem and living a fuller life. It doesn't mean I don't cry about things sometimes... just that I strive for the above when it comes to my pain.

I don't know if this is helpful or just annoying for you (I hope not .. and it is presented only in an effort to be helpful).... but what you write makes it seem more like your inability to move forward and decide is based on bad experiences in your past rather than confusing medical advice. It seems like you have a top notch doctor giving you the best advice from all his many years and patients and you are holding back because you have still not reconciled with some of your bad experiences... which not only were bad then but have continued to affect your life by holding you back now and continuing to be an excuse... at some point we all have to let go of those types of experiences and not let them continue to keep us down.... and that really is a choice we can all make. Just like how we react when things don't go as well as we would like.

OK... I am not a psychologist or anything close. I just want so much for you to see how it looks from the "outside" in the hopes that maybe it might be helpful. I have been there too.

Many kind and gentle hugs. I hope you have been able to get your pain flareup under control and are feeling somewhat better.



Sarah

Before I bought a PDA, Franklin Quest/Covey was my first stop on a trip to any mall...I always needed something for my organizer. I never bought the book, though I used to sneak peeks at it while I browsed or waited on line to pay.

I very much appreciate your caring and concerns, and do understand the importance of attitude. It's certainly something I'll take under advisement, as I know that self-help and such works for a lot of people.

I hope this thread will draw even more Sisters who've been where you, Jude, Loretta and I have....I'm sure their input, added to all of yours, will add ballast as I consider my choices.

Wishing you (and everyone) a painfree day...

Hannah

Hannah,
I had neither Endo or Adeno, just a faulty uterus, lots of bleeding, swollen ovaries, cysts and adhesions. I did well for about 6 months post op and than the pain started to creep back. I still have major swelling problems and lots of GI problems. I also have nerve damage, which one of my docs thinks may be contributing to the GI issues.

I will say that I don't have alot of pelvic pain anymore. Most of my pain is abdominal and just above the bikini line. I have had to have additional surgeries trying to get to the root of the problem but nothing has worked long term for me.

You just never know what cards you are going to be dealt. It is possible that the hyst will fix your problems, it is also possible that things may stay the same or get worse. For me, they are worse.

Whatever you decide to do Hannah, your sisters are here for you.

I'm so sorry about your situation. What I do admire about you and all the Sisters here is how brave you were to try something decisive like a hyst in the first place, not to mention the courage it takes to keep moving forward and help others as well.

Oddly, my pain is quite low down, too - it feels identical to menstrual cramps, except that they never end. Many early mornings, I stumble to the bathroom with my head in a fog, convinced that my period is starting - not possible as I'm on continuous Megace to suppress it. Still, that's how my period used to begin, early a.m. in a blur of pain, before my endo symptoms cropped up in my mid-20s. Then the pain began starting earlier and earlier in my "cycle" (in quotes b/c cycle implies regularity and I never had that), along with spotting. My endo specialist says all of this is typical of endo. In fact, if I had endo only, I would not even consider a hyst....the adeno has muddied the issue for me.

Thanks so much for your input.

((HUGS)) and painfree wishes,

Hannah