Waited too long -- to take ANY action, whichever I'd choose?

Hello everyone: Once again, I'm not sure if I belong here b/c I haven't yet had a hysterectomy. And those of you who've read my posts know that my most recent dr. said I wasn't a good candidate for one. I am starting to doubt that, due to the amount of pain and where it's located and what hurts when.

But as I wrestle with this, all kinds of people are telling me that no matter which path I take - hyst, permanent nerve block, presacral neurectomy - I've ruminated on the decision way too long and so NOTHING will help me now. As one dr. puts it (and she is NOT a gyno nor a pain dr.), "By waiting so long to do anything definitive, you've probably let permanent damage to your nerve pathways develop."

Is this just another case of victim-blaming, or has anyone on the road been told, when surgery has not been the answer, that it is, in effect, your fault b/c you've waited too long?? This idea has recently been even more painful to me than the pain itself. I thought that taking the time to find out the right answer for my individual case was the best way to go. But how is any of us supposed to know, at the beginning, whether the pain is going to become chronic???

If you have had a similar experience with pain and decision-making, please let me know.....thank you so much.

Painfree wishes and ((HUGS)) to all,

Hannah
(endoplusadeno)

Hi Hannah,

First of all, I'm so sorry that you are getting all this conflicting information. Unfortunately, many of us have discovered that there is "art" in addition to "science" when it comes to the practice of medicine. The docs just don't agree on treatment plans.

I don't know quite how to respond to the idea of you possibly having permanent damage to your nerve pathways. Is it a possibility? Probably yes, based on posts I've read over on the road. Is this your situation? No way for any of us here to know that for sure.

I'm a market researcher by trade and one technique I use is something called triangulation ... look for the same piece of information to show up in three or more different sources and then you can start to have some confidence in its validity. You can apply this same logic to your current situation too ... think about all the information you've assembled. What things come up over and over? Then take into consideration the sources and your instincts about each of them. This would be my approach to deciding what I was going to believe ...

Hannah, I know you're looking for the best solution for you. And I applaud you. New treatments and meds are developed every day. At some point, you probably need to make a decision ... even if your decision is that you aren't going to make a decision. (Remember, doing nothing is a choice too).

My wish for you is a better quality of life ... sooner rather than later because life is too short to live it in misery. I'm praying that you'll get some clarity VERY soon. Sending gentle hugs your way.

Beth

Hannah,
I'm a sister who hangs out on The Road. I've had ongoing problems ever since I was about six months post op. About 2 years ago I was told that I had nerve damage. I've tried various surgeries and nerve blocks but have not received long term relief.

None of my doctors have indicated to me that the hysterectomy itself, or the length of wait time had a bearing on my situation. What they have told me is that it wasn't necessarily the hysterectomy, but the number of surgeries that I have had. Each time we have surgery there are risks and complications.

Unfortunately their isn't a way to know ahead of time what the cards hold for us.

I'm sorry you are having to deal with so much. I hope you find the answers that you seek and need.

I found this website over two years ago, when it first began to seem that my pain was becoming "intractable," as my pain dr. is legally required to write on my scripts in NJ.

My heart went out to everyone for whom a hyst turned out not to be the answer, or whose hyst opened the door to new illnesses like FM and arthritis and worse. I felt even worse for those who were hustled willy-nilly into the OR without being offered other options first. Chances are, the long-term result would have been the same; but my heart broke nonetheless.

When applying the experiences to myself, I figured, I already have one autoimmune disorder (thyroid), so I wondered if a hyst would open the door to more, or was my body used to being abused? And was the adeno a source of pain, as most doctors said, or not, as the most experienced doctor I've seen (the last-he sees only pelvic pain-endo patients) told me, so a hyst would not help at all? I can't make sense of these or any of my other questions.

Some doctors say the "pain gate" theory is a valid one; but when pressed, the same doctors backpedal and say, listen, it's only a theory. Some friends say, Hannah, if I were you, I would've had a hyst when the pain first became unbearable because you're not planning to have children anyway. They say it as if the operation were like having a tooth pulled; they do not know what a trauma it can be to the body, nor how tough it is for many women to get on the right HRT even if they otherwise remain healthy. I've learned that right here.

To me, it seems that the women who do best are the ones whose disease is contained - confined to the uterus, such as fibroids or adeno without endo. Anything else looks to me like a crapshoot.

I suppose I'm asking for too many opinions and not listening to my own heart; its thoughts are being drowned out by all the other voices! Beth, your marketing expertise is a very good way to reason about this topic; thank you for bringing to it to my attention. Kim, I'm glad none of your docs has tried to lay any kind of guilt trip on you. I'm beginning to think I should be suspicious of any doctor who would. Victim-blaming is an ugly, heinous copout by anyone, worst of all doctors.

Whatever I decide, it has to happen soon; it's "fish or cut bait" time for me; the pain management doctor wants me to make a decision or I'm not sure he'll continue to care for me.

Thanks for your thoughts and good wishes!

((HUGS))

Hannah