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saw the pain management doc, he thinks I need surgery again saw the pain management doc, he thinks I need surgery again

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Unread 04-23-2004, 08:46 AM
saw the pain management doc, he thinks I need surgery again

I've been to he!! and back, and now this guy thinks I need srugery again. He palpated a mass in my right ab, right about the spot of my incision from laps and LAVH. He feels the endo is reproducing. He told me that my options are surgery, or stop the hormones.

When I"m not on hormones, I am a total basket case. I can't function. The hormones help me feel human. Otherwise I"m a woman in a perpetual .

I can't win. I am only 3 months postop from a lap, and 7 months post op LAVH. This made a whopping 6 surgeries in a matter of 7 months. My body is exhaused. I'm still not back to normal yet.

Besides, they had trouble bringing me out of anesthesia after the last surgery, and I"m afraid I won't wake up if they try again.

Thanks for listening to me

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Unread 04-23-2004, 08:58 AM
saw the pain management doc, he thinks I need surgery again

Oh, honey ..... lots of s

Going to the PM was supposed to make you feel more at ease, not less. How frustrating!!! I am so truly sorry.

So, big question ... is the PM doing anything to help you manage the pain now?

Just know that you CAN WIN... although it seems like its a no win now, I am confident that you can find a doctor to help you sort through your issues and find a way to resolve them in a way that brings you the best quality of life that is possible.

Hang in there. PM me anytime you need extra hugs. I'm here!!
Unread 04-23-2004, 09:05 AM
saw the pain management doc, he thinks I need surgery again

Well, yes. He gave me ideas (other than drugs) to help me cope with the pain. I'm doing well with it all, considering all I've been through. I'm dealing with it. I know I"m going to have pain, and I just need to make the most of it. So on my bad days I tell DH I'm hurting and he gives me the space I need. On my good days I try to make up for it, and catch up on housework, and spend time with my kids and husband.

I wonder if I can just continue the hormones, and just deal with the pain. I'm totally afraid of another trip to the OR, and I can't live with out my hormones. And since my GYN is refusing to take me back to hte OR, I would have to find another dr too.

Not a battle I want to fight right now.

what would I do without you fellow road travellers?! You're the only ones who really understand!

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Unread 04-23-2004, 09:22 AM
saw the pain management doc, he thinks I need surgery again

It does sound like you are dealing with it all rather well

I don't know which hormones you are on, but, I wanted to mention something my doctor said to me about my history of endo and HRT. He said, if my ovaries come out, I would be on estrogen and progesterone. The progesterone was to keep the endo at bay (prevent it from feeding on the estrogen). With that in mind, I wonder if you could ask your GYN about increasing your progesterone level (or putting you on bio-identical progestone if you are on synthetic)? Just a thought... something you may want to discuss with your GYN.

Also, a friend sent me to a website that is called endo101 that has some [pretty radical IMHO] viewpoints about estrogens in our environment and food sources that could be aggravating your endo. You might want to read what they have to say, take from it what you want and discuss it with your GYN as you see fit.

Just some nonsurgical ideas to throw your way from a fellow endo sister.
Unread 04-23-2004, 09:49 AM
saw the pain management doc, he thinks I need surgery again

Another thing to consider --

If you cut down your hormones gradually over a couple weeks/months, and stop, many of your symptoms from lack of hormones will go away over time.

This is a terribly common situation with endo. Many docs keep women off hrt for some months after a hyst for endo. Prometrium, which is a natural progesterone can help dry up any remaining endo, and antidepressants, especially effexor can keep the hot flashes tolerable.

The fog does dissipate over time. ((AudreyS) and ((Beth)) have also been there/done that. ((Audrey)) could eventually go on a low dose estrogen, after several months of being estrogen free, but does monitor her pain.

Unread 04-24-2004, 03:52 AM
saw the pain management doc, he thinks I need surgery again

I am sorry to here you are headed for another surgery. i too have just been scheduled to have an exporatory and adhesion removal. I am tired of PM and feel like I am an addict in the making. This whole process has become quit frustrating so I can only imagine how you are feeling right now.

Whats worse is most people dont understand that this is a surgery that can cause more problems (in rare cases) then it was supposed to fix. Good luck to you.
Unread 04-24-2004, 08:26 AM
saw the pain management doc, he thinks I need surgery again

Dear ((Laura))

I had the same experience at Pain Mgt... the PM doctor did two pre-sacral nerve blocks that helped for a couple of hours and then sent me back to the Gyn to have a pre-sacral neurectomy done. He never gave me any drugs or pain meds but did support the small dose of Elavil I was on. I would defer to your Gyn regarding the hormones rather than the PM doctor.... I personally did not find the PM doctor I had very knowledgable regarding the deatiled endo/hormone issues so would want the Gyn to manage that aspect. I have heard the same as the others regarding the use of progesterone.

I did have the PSN surgery on Feb 4th. I had some small hope that it would have the same affect as the nerve blocks... but it did not. The nerve blocks covered a much broader area than the PSN.... I guess that makes sense since they just flood the area with anesthesia when they do the nerve block, versus cutting a particular nerve fiber. The doctor also removed endometriosis and endosalpingiosis... 2 1/2 months post-op and I am still having pain.... but I have had a few days recently when I thought maybe it was better.

I hope you find better relief soon. I told the PM doctor that, for me, the endo was a quality of life issue versus a quantity of life issue (like cancer), so I had to balance the disease versus the "cures".

Unread 04-24-2004, 07:10 PM
saw the pain management doc, he thinks I need surgery again

Hi Laura

Well, you were 2 days before me for the hyst, and a week before me for the pain mngt. doc. I go next Friday. I totally understand how you feel about the idea of surgery again. I don't think that would even be something I could consider right now. And from what you've been through, I'm surprised it seemed to be such an option for your pain doctor. It almost seems like they want to take the easy way out (for them, not for you), and just ship you off to surgery again. I'm sorry your experience wasn't better.

I don't know what to offer, except for 's, and know that you're not alone out there. I hope you and your doctors can come up with something other than surgery. Keep us posted.

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