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View Poll Results: What has been your biggest problem since your hysterectomy?
hot flashes 2 5.00%
depression 9 22.50%
anxiety 5 12.50%
feeling of not being a complete woman 1 2.50%
not being able to have children 1 2.50%
mood swings 2 5.00%
night sweats 5 12.50%
feeling left out or behind 3 7.50%
anger 1 2.50%
other 11 27.50%
Voters: 40. You may not vote on this poll

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Hysterectomy due to Endometriosis Hysterectomy due to Endometriosis

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  #1  
Unread 04-25-2001, 05:23 PM
Hysterectomy due to Endometriosis

I'm 25 and had my hyster last year. I had no choice in the matter since I had severe endo with hemmrrhaging cysts. All my reproductive organs had shut down and "died" because of being blanketed with black endo. It didn't stop there. It also affected my colon, which I had few inches removed. I have been on 3 different types of hormones which none have actually done the job yet. My first two made the endo grow faster and I had yet another surgery. I felt like I was no longer a woman for a while. The guy I was with walked out on me during all this. He wanted someone he could have kids with. Luckily, I found a wonderful man and I just got married to in Feb. Everyday is different. I could be severely depressed or on top of the world. Today is a good day. Except for these hotflashes. Please, tell me it gets easier.
  #2  
Unread 04-25-2001, 07:15 PM
Hysterectomy due to Endometriosis

Hi Endo Sister -

I had already made a decision not to have children prior to my hysto, so for the most part that didn't affect how I felt about myself afterwards. I'm sorry your BF was so horribly un-supportive. That must have been devastating.

The biggest problem I've had is regulating my HRT. Initially the doctor gave me a shot and a prescription for estradiol pills. The pills were not a good solution for me so I went back to shots for a while before deciding on going with a patch. Now I'm using a Climara estrogen patch that's changed weekly.

Once I got a consistent source of estrogen, I've pretty much been happy with how things worked out. The pain from the endo was constant and it seriously interfered with my job, my relationship with DH, my social life and recreation. I had a long time to think about my options and this was my choice. Living with endo and all the treatments was not an option. Because I had control - or felt like I did - this hasn't been a difficult transisition. The scariest thing for me was being menopausal and OLD! I don't want to be old, but now that the endo and adhesions are gone, I'm able to be a whole lot more active than I was before the hysto - I *feel* younger. And happier.

There's a couple sites that you can go to for support regarding the child issue - if that's still an issue - to explore adoption or living childfree.
One is www.inciid.org - this is primarily an infertility site that has many boards for women in different circumstances.
For living childfree, you might try www.cfafterif.org for women (or men) that are looking for answers to the question of whether or not to remain childfree - infertile or not. Both are really good sites.

Good luck!
C
  #3  
Unread 04-26-2001, 06:23 AM
Hysterectomy due to Endometriosis

Hi Endo Sister,

Well it does get easier! I am 30 and had a vag. hyst 18 months ago due to a long and nasty battle with endo.
I was glad to hear that you did find a wonderful and real man who loves you for you. I was very fortunate to have a great guy stand by me through the whole process.
The decision to not have children was something we had already decided on even before the surgery. For us this finally ended my mother-in-law's "oh you will change your mind". Even though we are happy with our lives, there are many women with children who still can say things (I hope not intentionally) that can come across as very mean. To deal with this, I have an Ally McBeal moment and picture something funny/non-harming nasty occurring to them.
As for the hot flashes - who ever thought we would have to worry about those in our 20's! My eventually did go away. I was lucky in my surgery to have kept both my ovaries so I never did the hormone medication. In retrospect, some days I should have! Crying in the middle of the kitchen because I didn't know what I wanted for dinner wasn't an experience I want to go through again.
At 18 months I am finally getting most of my energy level back, but I still do have some discomfort in me belly. I was skating this winter, did a close version of the splits (by accident) and thought for sure I had broken my vagina. (My brother had a difficult time hearing me say this word - it made me laugh)
Hang in there as I have found that for me, recovery comes in plateaus. I reach a new one and think wow! this is great, stay there for a bit to the point when I think okay I know I can be better and then pow, new level.
Also I found having endo for so long, I forgot what true health was. A dear chiropractor friend had told me a "rule" he uses for returning to health. For every year you were ill, it takes approximately 2 months for recovery.
I hope this rambling helps in some small way. It was therapeutic for me, so thank you - without planning on it you helped me too!
  #4  
Unread 04-26-2001, 09:37 AM
Hysterectomy due to Endometriosis

Hello Fellow Endo sisters!!

I am one week post op TVH, and still have a lot of pain. Very comparable to pre-op actually. So my question is, does the pain subside? Anyone still taking pain medication?
  #5  
Unread 04-26-2001, 03:31 PM
Hysterectomy due to Endometriosis

Hi! I had a TAH 11 weeks ago and I am having the same pain I had before the surgery. I thought that once everthing was removed, the endo pain would go away. Doctor says to give it more time. Anyone else have a similiar situation? Right now I feel like I went thru the TAH for no reason which is making me very depressed.

Thanks for listening.
  #6  
Unread 04-26-2001, 04:11 PM
Hysterectomy due to Endometriosis

To the two women that have not had their hysterectomy done that long ago, I wish I could tell you that the pain just magically disappears. But it doesn't.
In my case Endo was missed during my TAH (because of being on Lupron 6 months prior) and the pain never stopped. I had another surgery about 4 months later to remove what was left and part of my colon. I've never stopped taking pain meds. I now am taking only muscle relaxers to help with my intestines to get them back on track. So now I'm not on any powerful pain meds, thankfully. The first time in 2 yrs and I have not been experiencing endo pain since my last surgery almost 5 months ago. Maybe now I can have a normal life. I have been told by other Hyster Sisters that even 2 yrs after their hysterectomy they still have some pain and those are the ones without endo. So good luck and I'll keep you in my prayers.
  #7  
Unread 04-27-2001, 09:49 PM
Hysterectomy due to Endometriosis

My biggest problem is fatigue. I just can't do all the things I want to do. I get so tired. I can't even sit at the computer communicate with my hystersisters. My superwoman cape isn't working. If anything makes me depressed it's that I feel like I'm not getting things done.
I don't just mean housework, but things I like to do, like work in the garden, or sewing, or taking a walk with friends. On my time off I just want to veg.
  #8  
Unread 04-27-2001, 10:03 PM
Hysterectomy due to Endometriosis

I put other because I have been kinda confused for some reason. Very forgetful and sometimes depressed. I dont know if I am depressed enough to get meds or not, but I just feel as though No one loves me sometimes. Like I am not good enough. I plan to go back to college this fall and I am scared to death. I want my 4 year degree in nursing and I cant remember anything now, much less all that work I'll have to do. Not being able to remember makes me feel so stupid sometimes even though I am very smart. I cant remember what I have read and I cant remember what my three children weighed or what time they were born!
Only once in a blue moon can I remember it.
Could this be from depression or from my body being so screwed up so all these years? I have always been ADD, but It sure seems to have gotten worse over the years.
  #9  
Unread 04-27-2001, 11:59 PM
Hysterectomy due to Endometriosis

DoubleD,

I know exactly how you feel. Im 23 and had TAH in sept 2000. I was back in the hospital less than 4 months later and had to get ovaries removed due to endo and severe adhesions removed. I was also started on HRT immediatly after having ovaries removed. And now after all that im still having the same kind of pain. Dr strongly believes endo has returned, she has had me checked for bowel and stomach problems and came up with nothing. She took me off all HRT and it is still not any better. I go back for a reevaluation in a week and DR told me if not any better then probably another surgery (laproscopic) to see whats going on. I feel like this is always going to be an ongoing battle so i hope if there is another surgery that this will be the end of it. You are not alone and i feel what you are going through. E-mail me anytime if you need someone to talk to. (((LOVE & LOTS OF HUGS))) Becky
  #10  
Unread 04-28-2001, 04:19 PM
Hysterectomy due to Endometriosis

You guys are really scaring me
I had a TVH 9 days ago, with the hope that I could get my life back on track. It sounds like once you have endo, it's there forever, it starts attacking other organs????

Please tell me that there are some sisters out there that HAVE recovered. I've read a lot of posts and some are doing so well, and some not so well. But you are the sisters I have the most in common with.

Trying to keep a good attitude,
Cindy
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