Re: Back from surgery - To: Sherri
From: Dena (anonymous@obgyn.net)
Mon Jun 12 20:53:57 2006
Hi Sherri,
I'm sorry it took me so long to get back to you. Luckily I'm having a
couple good days and have been quite busy.
Your doctor explained it right, in theory. If it were only that easy.
Unfortunately endo always seems to have a mind of it's own and does
whatever it damn well pleases. ;) After my hysterectomy I was put on a
low dose estrogen pill that was not supposed to effect my endo at all,
just help my menopausal symptoms. (This was told to me from a well
known endo surgeon who's mentioned on many web sites/posts quite often)
I believe that was what made my endo continue to flair up. I have also
heard theories about endo producing it's own estrogen, enough to feed it
and make it grow. If that is true then you'd have to remove every speck
of endo during hysterectomy, which is near impossible.
I do have severe adhesions and that might be what causes a large amount
of my pain. I never know if it's the endo or adhesions. I don't think
I'll ever get the true answer to that question, no matter how many times
I ask, and how many different doctors I ask.
I have been off the hrt (estratest) for a while now (about four months I
think). After about a month I noticed a drop in pain and I began the
natural progesterone cream. I felt wonderful! Now the pain is
returning. I still use the progesterone cream because it really helps
with depression and energy, but it's obviously not going to keep my pain
at bay.
I totally understand your frustration with this disease. It's hard to
understand and cope with because it seems like there's nothing that can
be done sometimes. We are all willing to do whatever it takes to get a
break. If you feel that you're ready for a hysterectomy at this point
in your life, it's understandable. I was ready for mine and I was 31.
But if you dive into it just because you think it's a cure, you end up
disappointed.
I hope I've answered the questions you had. I'm really tired and am
having a hard time keeping the brain fired up tonight! If you have any
other questions for me, or if this just didn't make sense to you, ;) let
me know and I'll try my best tomorrow when I'm fresh.
Take care Sherri. All my best to you.
At Sun, 11 Jun 2006, Sherri wrote:
>
>DENA, THANK YOU FOR GETTING BACK TO ME, JUST NICE TO BE ABLE TO TALK TO
>SOMEONE THAT HAS BEEN GOING THRU SIMILAR PROBLEMS AND HAS TO DEAL W/
>SAME SITUATIONS. WELL, WHAT YOU SAID WAS NOT WHAT I WANTED TO HEAR TO
>BE HONEST BUT THANK YOU FOR TELLING ME. I AM STILL THINKING ABOUT IT
>AND NOT SURE WHAT I'M GOING TO DO, I'M JUST TIRED OF EITHER FEELING BAD
>ALL THE TIME. IF I'M NOT DEALING W/ EXCRUCIATING PAIN FROM MY CRAMPS,
>NOW I HAVE MIGRAINES TO BOOT AND THEN I'M JUST ALWAYS TIRED AND
>DEPRESSED IT SEEMS LIKE. I NEVER FEEL LIKE DOING ANYTHING ANYMORE. AND
>I JUST WANT SOME RELIEF.
>
>SO YOU'VE HAD A HYSTERECTOMY BUT YOU STILL DEAL W/ ENDO PAIN? I THOUGHT
>ONCE THEY TOOK YOUR OVARIES AND UTERUS YOU WOULD BE OVER THAT, FROM WHAT
>MY DR EXPLAINED TO ME, IT'S MY OVARIES THAT PRODUCE TOO MUCH ESTROGEN
>THAT CAUSES THE SCAR TISSUE TO GROW LIKE CRAZY, THEREFORE THE PAIN I
>ENDURE. AND SINCE THEY WILL TAKE MY OVARIES.. WELL I THOUGHT THIS WAS
>A SOLUTION? NO I'M NOT REALLY LOOKING FORWARD TO MENOPAUSE BUT I'M ABOUT
>READY FOR ANYTING OTHER THAN THE WAY I FEEL NOW.
>
>ANYWAY WOULD APPRECIATE HEARING BACK FROM YOU OR ANYONE THAT HAS A
>SUGGESTION/OPINION?
>
>THANK YOU AGAIN, SHERRI
>
>At Sat, 10 Jun 2006, Dena wrote:
>>
>>Dear Sherri,
>>
>>First.... Welcome to the forum! I'm sure you'll find some good advice
>>here from all of these wonderful ladies, or an ear to listen when you
>>feel like screaming or crying. (or eyes to read in our case ;)
>>
>>I don't mean to bust in on the discussion here, but... please, please,
>>please don't rush into a hysterectomy. So many women will tell you,
>>from experience, (including myself) that it is not a cure for endo.
>>Unfortunately there is no cure for it yet. If you are doubtful at all,
>>still considering having any or more children, or not ready for
>>menopause (and possibly menopause combined with endo/adhesion pain like
>>I suffer from), please don't do it.
>>
>>I don't mean to be a downer here, but your words were that you were
>>hoping it would 'solve your problems that you have with endo'. If a
>>hysterectomy solved the problems with endo I wouldn't be here writing to
>>you right now. Please exhaust all other options first. Many women find
>>relief from diet changes, excercise, accupuncture, natural progesterone,
>>medication, etc.
>>
>>Good luck to you Sherri. I hope everything works out.
>>
>>At Sat, 10 Jun 2006, anonymous@obgyn.net wrote:
>>>
>>>At Sat, 10 Jun 2006, Melissa wrote:
>>>>
>>>>Aloha Ladies...It's Melissa from Hawaii...
>>>>
>>>>The last time I wrote to this forum was the day before my vaginal
>>>>hysterectomy that was to be done on June 2.
>>>>
>>>>Finally am able to comprehend and let you know what's going on. Well, I
>>>>had the surgery. It took 3 hours instead of 1 hour and a half. The
>>>>doctors told me that everything went well. I spent 3 days in the
>>>>hospital. Came home not feeling any pain because of all the medication
>>>>which was a relief.
>>>>
>>>>Medication started wearing off the next day and I started getting
>>>>excruciating pain on the left side of my groin area going down my leg to
>>>>past my knee. My leg would feel like it was burning and then go numb.
>>>>Not able to put any pressure on it. Couldn't even get out of bed.
>>>>Husband drove me back to hospital to see obgyn. Doctor says that the
>>>>everything looks in place and things should be getting better with no
>>>>bleeding. Doctor ups my pain medication dosage and has me see a
>>>>neurologist.
>>>>
>>>>Went to see the neurologist yesterday. His diagnosis for me now is that
>>>>I have a pinch nerve in my groin area to my back that has caused me to
>>>>have arthritis in both my back and left leg. He has scheduled for me to
>>>>go to physical therapy once a week for five months. Gives me more
>>>>antibiotics and medication for my migraines. He also tells me that if
>>>>the physical therapy doesn't give me back any feeling in my leg and
>>>>relieve the pain in my back, then he wants to run more tests on my
>>>>nerves in my back and leg. If the situation does not get better over
>>>>time, he wants me to have another surgery...this time for my back.
>>>>Knowing this I am in shock. I know that a back surgery is more serious
>>>>than a hysterectomy because if anything goes wrong, I could be paralyzed
>>>>for life.
>>>>
>>>>As I sit here writing this out and thinking to myself all last night, if
>>>>it ain't one thing, it is another. I remembered all the encouraging
>>>>letters that you women on this forum have written to me, I have decided
>>>>to get another opinion and even change my obgyn. I just went in for
>>>>hysterectomy to take care of my uterine bleeding, ovarian cysts, and
>>>>endometriosis and now I am looking at having back surgery and walking
>>>>with a limp for the next five months.
>>>>
>>>>Now, I am definitely not able to go back to work because I am not able
>>>>to stand for long periods of time or put any pressure on my left leg and
>>>>I could fall because it does go numb. Just more pressure for my husband
>>>>to work and take care of me.
>>>>
>>>>Is there any hope out there? I am holding on to any hope out there that
>>>>things will get better in time.
>>>>
>>>>--
>>>>Melissa
>>>>
>>>--
>>>MELISSA, I'M NEW TO THIS SITE AND I AM CONTEPLATING A FULL HYSTERECTOMY TO HOPEFULLY SOLVE MY PROBLEMS I HAVE W/ ENDO. I WAS WONDERING IF YOU COULD TELL ME HOW YOU ARE DOING W/ THAT AND DID IT HELP YOU WITH YOUR ENDO? I KNOW YOU ARE NOW SUFFERING W/ THE LEG/BACK PAIN BUT JUST WANTED TO SEE IF I COULD GET ANY ADVICE/SUPPORT W/ ENDO? I'VE WENT THRU 2 LAPRISCOPY SURGERIES AND ONE ROUND OF A 3 MONTH SUPPLY OF LUPRON SHOTS WHICH I DID NOT DO TOO WELL WITH.. ANYWAY APPRECIATE ANY FEED BACK YOU CAN GIVE ME? THANK YOU -SHERRI
>>>
>>--
>>Dena
>>
>--
>MELISSA, I'M NEW TO THIS SITE AND I AM CONTEPLATING A FULL HYSTERECTOMY TO HOPEFULLY SOLVE MY PROBLEMS I HAVE W/ ENDO. I WAS WONDERING IF YOU COULD TELL ME HOW YOU ARE DOING W/ THAT AND DID IT HELP YOU WITH YOUR ENDO? I KNOW YOU ARE NOW SUFFERING W/ THE LEG/BACK PAIN BUT JUST WANTED TO SEE IF I COULD GET ANY ADVICE/SUPPORT W/ ENDO? I'VE WENT THRU 2 LAPRISCOPY SURGERIES AND ONE ROUND OF A 3 MONTH SUPPLY OF LUPRON SHOTS WHICH I DID NOT DO TOO WELL WITH.. ANYWAY APPRECIATE ANY FEED BACK YOU CAN GIVE ME? THANK YOU -SHERRI
>
--
Dena
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