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Postponed Surgery Postponed Surgery

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  #1  
Unread 02-04-2008, 10:24 PM
Postponed Surgery

I was here a month or so ago, planning a hysterectomy for January 31st. Well I decided to try some options before going any further with the plan. I have endometriosis and adenomyosis.

I had a laparoscopy in mid-December and they found a chocolate cyst (endometrioma) on my left ovary and used electro-coagulation to get rid of it. Seems to have helped a little.

So now I'm on Prometrium 100mg at bedtime and a progesterone cream 20mg in the morning. It seems to have helped to shorten my periods but the PMS pain and nausea is a week long, I still get sick when I ovulate, and my periods are still heavy and really painful. Right now I'm on Percocet to try and cope with the pain, and I use a really nice heating pad called EndoFemm - filled with corn and shaped like a triangle so it covers those hard to reach areas!

Anyone tried Prometrium to help with endometriosis and adenomyosis? The doc says there is a chance it will help since my hormones are out of balance and I have estrogen dominance which feeds all these problems.

Last night I had terrible stabbing pains in my right ovary so tomorrow I have an appt to see the doc to check that out.

Anyway, I'm exhausted, high from the Percocet (which I do not enjoy at all), and having a hard time coping. One of my good friends just had a total hysterectomy and ovaries removed too - and she had adenomyosis. I can't understand why they removed everything and it doesn't seem like she knows much about it at all. It's so sad that people aren't learning more about these conditions before having everything removed - I don't know if she had options but I hope I do.

I'm scared as hell, feel like crying most of the time, and having a very hard time coping with the pain, as well as the possibility of losing my uterus and maybe my ovaries.

Are there any holdouts here? People that are just trying options and trying to make it without the surgery, doing the best they can to deal with the pain and sickness? I mean, I'm so fortunate I don't have any cancer or anything, so this wouldn't apply to anyone that has something that is life-threatening. I just want to know what other people are doing to try and cope and manage to make it through every day.

*Mahina*
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  #2  
Unread 02-05-2008, 07:20 AM
Postponed Surgery

I have been holding out for almost a year, with many of the same symptoms as you have. I have finally decided to get a hyst (I think ) in mid March. I am tired of living on pain pills (Vicoden works on mine...nothing else will). I just want to feel normal again. I am going to leave in 1 ovary with mine.

Hysterectomies are big decisions. Everyone handles these things differently. I am just tired of "feeling high" on pain drugs and feeling miserable otherwise. That is why I think I have finally made up my mind on this.

Hugs,
Jeni
  #3  
Unread 02-05-2008, 10:41 AM
Postponed Surgery

Jeni-

I sure wish you the best with your surgery decision.

I wish I was closer to menopause (and who would ever think that would be a good thing to say?), so I would know there would be an end to the adenomyosis pain. But menopause could be as long as 7 more years - it's hard to say and the doc says the test to determine what stage you are at is mostly inconclusive.

On the good days, I get amnesia and think everything's okay, and I'll get better. On the bad days I'm reminded how ridiculous it is to think that way.
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  #4  
Unread 02-05-2008, 10:50 AM
Postponed Surgery

Hugs...right there with you. I am only 35, so I know what you mean by the age thing...
  #5  
Unread 02-05-2008, 02:06 PM
Postponed Surgery

Hi mahina!

I am sorry you are feeling miserable!

If your doctor suspected only adenomyosis, a hysterectomy to remove the uterus could end all of your pain and issues. However, you also have endometriosis for which there is no cure. And since endometriosis is fed by estrogen, hormone issues have to be considered when dealing with endometriosis. The very estrogen that aids in the health of your heart, bones, eyes, skin, etc. also caused the endometriosis to grow and spread and create havoc in your body.

We have several good Endometriosis Resources I would suggest you read through to learn as much as possible about endometriosis. There are adenomyosis resources in that section as well.

Also, seek out a second opinion. If at all possible, consult with an endometriosis specialist. For the endometriosis you need a doctor who routinely treats women with endometriosis and who has superior treating and surgical skills in this area.

You will also want to learn all you can about Hormones before making any final decisions.

We do have an Endometriosis Support where you can ask specific questions regarding endometriosis. There are ladies in that forum who are post pre hysterctomy and post hysterectomy dealing with endometriosis issues.

I think you are very wise to be trying alternatives and options first! I hope that one of them turns out to be successful for you and you can avoid a hysterectomy altogether!

I am sending many s your way and hope that you are feeling much better soon!
  #6  
Unread 02-05-2008, 02:48 PM
Postponed Surgery

Well ladies, this all turned around rather quickly on me. One day I'm postponing, the next day I'm so sick I can't take it any longer. So... I'm back on the calendar to remove my uterus and cervix, and we will try leaving the ovaries for now.

I'll add my date to the calendar here at HysterSisters.
  #7  
Unread 02-05-2008, 03:05 PM
Postponed Surgery

Good luck! Here's to ending your misery!! CHEERS!

Jeni
  #8  
Unread 02-05-2008, 03:07 PM
Postponed Surgery

Thanks, jbud. I'll drink to that!
  #9  
Unread 03-08-2008, 08:37 PM
What About Supracervical Hysterectomy?

When I read your response, I felt I was reliving my past 10 years all over again. I also suffered for years with endo and heavy periods so bad I couldn't get out of bed. I became so weak and the pain so intense, it was then I exhausted all other avenues and resigned to having a hysterectomy. Since my pain was focused on my right ovary, I was able to keep my left ovary and still keep my hormones. It has been two years or so since my supracervical hysterectomy, I am a new woman. Sometimes a total hysterectomy doesn't have to be the case and you reap the benefits by no longer having the horrible pain and blood loss. Have you looked into this?
  #10  
Unread 03-08-2008, 09:09 PM
Postponed Surgery

Actually, since this posting, I had a hysterectomy on 2/26 - it was LSH. I'm recovering well and hoping this will do the trick.
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