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lost and alone lost and alone

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  #1  
Unread 01-04-2004, 03:14 PM
lost and alone

Hi Sisters

Its been a very long time since i chatted! So forgive me if i sound a bit odd i'm out of practice.

I'm hoing that someone may be able to give me some advice. I had my Hyst 9/11/02 after years of very painfull ,heavy periods. They left my ovaries as i was only 35. But every since i have been having bad monthy pelvic pains. They put me on a 3 mth course of Zoladex to shut my ovaries down and hopefully give them a kick start. After 2mths off the Zoladex the pains returned with vengence! They have agreed to put me back on Zoladex although this is not the normal practice, they have also put me on livial to counteract the side affects of Zoladex. Any other form of treatment i have tried previous to my hyst so i am at the end of the line. The next thing will be surgery to remove the ovaries! More surgery what a nightmare. Is there anyone out there with a similar experience!!!
I feel lost and alone .

Fern
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  #2  
Unread 01-04-2004, 03:26 PM
Hello and Happy New Yr. to Fern and all the Sisters!

It's been a long time since I posted here as well. Thanks to Loretta for lighting a fire under me.

Fern, this is the place to be when you're feeling the way you are now! I don't have specific advice for you b/c we're not in the same boat exactly (other than having constant pain, that is). But the only way you're going to feel positive about your next step is to read and research the problem as thoroughly as possible on your own, then get as many doctors' opinions as you can reasonably afford to. Often, the best thing to do is to find out what a NON-surgeon thinks; among the many doctors I consulted was a neurologist. She sees many women post-hyst whom, she warned me when I was trying to decide which surgery to have last year, had not been helped. (I'm still pre-hyst and had a presacral neurectomy that was partially successful. I post here b/c I've had many of the same treatments and take the same meds as those who have already gone through the hyst and still have pain/problems.)

I know that the prospect of surgery is very daunting - it sure is to me and I've had three already (5 if you count nerve injections that I had to be put under for) - but if you find a doctor who makes a good case (through a lap, ultrasound, MRI, etc.) that your ovaries are still "feeding" active endo, you may want to stop the merry-go-round and have it done once and for all. I often feel this way about getting a hyst, but at this time, a dr. that I trust doesn't feel it's warranted.

I wish you the best of luck in whichever path you take!

With painfree thoughts and healing wishes,

Hannah
  #3  
Unread 01-04-2004, 04:49 PM
lost and alone

Dear Fern...

I am so sorry to hear you are still having pain

I'm there too... I only have one ovary left and after the TAH the Gyn took me off the BCPs for the first time in years... well it didn't take long before I was starting to have some familiar pains and some new ones. I was put back on the BCPs a few months ago but I think by then it was too late

I am not sure what is going on. I have more surgery on Feb 4th at the Mayo in Scottsdale. They think I still have endo troubles. I am not sure.... somedays I think so and other days it doesn't make sense... at first I was having a definate cycle to when things would be more painful than usual but lately it has started to hurt worse all the time.

Have you check out the International Pelvic Pain Society? (www.pelvicpain.org )

Best wishes and hugs. Keep us posted on how you are feeling and what you decide to do.

Sarah
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  #4  
Unread 01-04-2004, 07:01 PM
lost and alone

Fern:

Just wanted to say that you are not alone [on many levels]. We care about you.

Please keep us posted as you work to resolve your pain issues. The more info we share, the stronger we all become!!!

  #5  
Unread 01-05-2004, 02:06 AM
ex-Brit

Definitely not alone, I too dropped off the forums after hyst recovery and just returned to activities and in fact increased as my health picked up so much.

Not sure from your post what explorations or possible dx you have, but would definitely be going for scans to see what is happening inside, especially as you have your ovaries.

A search on this site will soon yield posts from unlucky princesses whose surgery has somehow turned tamed ovaries into unknown misbehaving beasties.

Sadly, surgery alone can cause scar tissue and this too can be a source of pain, try a search on this site and see what you can find.

I am going in next Mon to have right ovary and cyst removed and probable adhesion dissected off right urethra tube from kidney to bladder. I could have chosen to keep ovary but since bad pid infection, this ovary has been troublesome so it can go and avoid need for extra surgeries down the line.
I have my life on track and more and so am trying to minimise future problems. Left ovary will have to up hormone production and if it doesn't kickstart then guess I will have to deal with menopause. Currently, right ovary is chucking out hormones that have me bloated, swollen, moody etc. like permanent pmt!

You are so not alone, keep posting and you will receive support, info and links for research, oh yes, and many good laughs, found a good post where both spouses had to have bowel cleanout the same night... really true and funny tale. Please don't feel you are alone, Linda
  #6  
Unread 01-05-2004, 06:13 AM
Re: ex-Brit

  Quote:
Originally posted by lindy-lou Mags

A search on this site will soon yield posts from unlucky princesses whose surgery has somehow turned tamed ovaries into unknown misbehaving beasties.
Linda:
You have a way with words. DITTO!
  #7  
Unread 01-07-2004, 02:20 PM
Thank you Sisters!

Thanks for all your posts. I had forgotton just how helpfull this site is! What a light in a dark tunnel. It has given me the boost that i need and put me back in charge of my life again. I will keep you updated.

Many Thanks

Fern x
  #8  
Unread 01-08-2004, 09:55 AM
lost and alone

You are in my thoughts and prayers, Fern. I know this road can be long and difficult and discouraging, but it's true that we're all here for each other and that we are a great support system.

I will be keeping good thoughts for you and please take care of yourself.


Love,
Kathy
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