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27 facing tah 27 facing tah

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  #1  
Unread 09-15-2004, 10:09 PM
27 facing tah

I'm new here, but have been reading you all for awhile. Am 27, have endometriosis, PCOS, IB and fibriods, 1 little girl thanks to insemination. Cannot take the pain anymore, missing work, missing friends, time with my family. Quick history - diagnosed 4 years ago through lap, had two laps two months apart to treat cysts, endo, etc. Have since had too many trips to ER, drs, etc. In total now, three laps. My question is how do you know a Hyster is the right thing? How do you make that decision? What steps did you all use? I can see myself on the other side of the operation, pain free with my life back, but what if I regret not trying once more for another child? How do you make this kind of life altering decision? Any suggestions? Refuse to take Lupron, pain killers are like candy with the same effect.... any suggestions?
Thank you
Rae
TAH with ovary removal for treatment of Endo,cysts,etc
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  #2  
Unread 09-16-2004, 11:10 AM
27 facing tah

I feel sorry for you. I didn't have to make this decision until I was sure my family was complete. Even then, I tried several conservative routes before making this decision so I knew I was making the right one. Your case seems more complicated.

If you are thinking you might want to try for another child or even just want that opportunity to be there, I would discuss other alternatives with your doctor. You may not be ready to close that chapter in your life yet. I felt a loss even though I was certain my family was complete.

I hope you feel better soon.

  #3  
Unread 09-16-2004, 11:54 AM
27 facing tah

Hi Rae, and

You are very young to have to make this decision. But, I do know where you are coming from, as I had my hyst this past June. I'll give you my experience as to how I came to this monumental decision in my life.

For YEARS, I'd complained to my docs about horrible menstrual pain, only to be told that was "normal". Apparently lying curled up in a ball crying and having bleeding that makes the bathroom look like a crime scene, was "normal".

I finally found Dr. Prince Charming in June of 2003. After being told by 3 other gyn's that there was nothing wrong with me, my Prince figured within 5 minutes that I likely had endo. After a diagnostic lap endo was confirmed (severe, with tons of adhesions too). A month later, ultrasound showed likelihood of adenomyosis.

Took bc pills a few months, and they made the bleeding worse. I couldn't afford lupron, nor did I like the sounds of the side effects. I was taking tylenol 3 like candy.

February 2004, went in for lap to remove endo and adhesions. It failed, as the mess was so huge that the Prince didn't want to risk more damage.

After healing, I decided that I had no life, due to the neverending 24-7 agony I was feeling. Pain had consumed my life, and I no longer liked myself.

I scheduled the hyst shortly after, and will NEVER regret it for a second. And that's knowing that I never have, and never will give birth to a child.

Hugs
Northlights
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  #4  
Unread 09-16-2004, 04:12 PM
27 facing tah

Dear Rae,

I sure can't make guarantees it will work for you, and w/cysts it might not be a good option, but another option for you may be the Mirena IUD. Women tend to have very varying success with it, but below is a link to some HysterSister's testimonials on the matter. Some particularly positive comments were made by BethStuart.
"I had a mirena coil fitted for endometriosis. From the day I had it fitted I did not take another pain killer - it was the pain that was making my life a misery and stopping me from doing so much from business trip planning to keeping fit and sex. I did bleed for quite a while but so light compared to before that usually all I needed was a panty liner. I have now had a STAH because I had some large fibroids that were preventing me from urinating and it seemed the best solution.
For me, I was really disappointed because I was quite happy with my quality of life with the Mirena.
https://www.hystersisters.com/vb2/sho...196#post736196

The Mirena IUD is fairly new in the USA(2001 in Europe 1990) and contains progestins only. The progestin is in lower amounts than that of bcps and therefore dont tend to cause as much side effects as people tend to hear about with progestins (though I didnt have them) and it's effects are more direct considering it's location. It usually decreases the monthly flow and a good number of women dont even get a period with it. It is good for five years. I have one.

Though it's primary use is as a form of birth control, it is used in cases of endometrial hyperplasia (sometimes even in low stage cancer), fibroids (if there isnt too much distortion), cases of excessive bleeding where the cause has been elusive, endometriosis, and adenomyosis.
Mine is doing fine now (I have it to prevent recurrence of hyperplasia) but I will admit that the placement is not fun, and it seems that good placement is somewhat a matter of luck (having had 2 placed in the past) or ongoing cramping may occur. Mine has been so comfortable that I've had moments of doubt that it was there.

I've started to get curious about if it improves the fertility of women w/endometriosis (upon removal of course), but haven't researched it yet

http://www.biomedcentral.com/1534-5874/2/417
http://www.womens-health.co.uk/mirena.htm
http://www.endo.org.uk/info.html (only makes quick mention of the Mirena)

Good luck.

Pat


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  #5  
Unread 09-17-2004, 06:18 PM
27 facing tah

Rae,

My situation is similar to yours. I'm 28, no children, endo., cysts, and possible adenomyosis. When my doc. told me a hyst. might be my only option left for relief I was so overwhelmed. There is so much information out there and I didn't know where to begin - type/route of hyst., hormone therapy or no, managing menopause without hormones . . . I thought it meant that I'd be old before my time, die young, end up with sagging boobs, etc! So I took little steps. I wrote down all my questions, read lots of books, have spent HOURS online and lots of time on this site! The very best you can do for yourself is know your options and educate yourself.

I have not had a hyst. yet but I know it is in my future, the question is when. With all my research, I am confident that I am as prepared as I can be and as I compare the bad things against the good things, I am completely prepared to deal with menopause at a young age to get my life back.

If you are armed with the knowledge you need, when you reach that breaking point - the point that you just can't tolerate it any longer - you will know it's the right decision to make.

I'm betting that 90% of the ladies on these boards have some regret. Like Sistabeth who had completed her family but still felt a loss. There are others who never wanted children, yet feel the loss. I don't think any one of us can go through it without feeling that but it's the knowing that you made the right decision, that you tried all you could and researched all your options that makes that loss bearable.

Good luck to you!
HS
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