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Just found out I need a Hysterectomy...a bit panicked Just found out I need a Hysterectomy...a bit panicked

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  #1  
Unread 09-24-2011, 01:00 PM
Just found out I need a Hysterectomy...a bit panicked

Hi ladies! I am 31 years old and have been dealing with severe endometriosis since I was about 15 years old and my periods became regular. It has gotten to the point that I need narcotic pain medications for the cramping, even during ovulation, plus I get all the other fun stuff that comes with it.

In addition to my hysterectomy I will be having my bladder "slinged," a pelvic floor muscle repair and a repair of a fistula between my vagina and urethra (my deliveries and pregnancies were considered traumatic).

So because of all of these things I am VERY nervous. I'm starting to obsess about it and my surgery isn't until November. I would love any tips or advice on the hysterectomy or other procedures....also I've been a sponge trying to find things I may not have thought of...so any thing you wish you would have known?

In general I think I just need some "comfort" from others who are going through it or have been through it. I'm young, most women I know are still having children, and here I am done and having a major surgery that they probably haven't even considered.

Thanks SO much in advance for your words of wisdom!
Melissa
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  #2  
Unread 09-24-2011, 01:37 PM
Re: Just found out I need a Hysterectomy...a bit panicked

Oh, Melissa...I feel for you. I'm 34 and will be having my surgery in Oct. or Nov., as well. I'm a bundle of nerves about it, just like you are.

I was initially in a total panic, but then my doctor referred me to this website, and it's been wonderful finding all the ladies on here. It's a very safe community to express your fears, concerns, grief, and anything else you're feeling.

What calmed me down the most is reading about other women's experiences with the surgery and how much better most of them feel after it. Use the search box to search for specific things you have questions on, and odds are you'll find tons of information. Knowing the facts always calms me down!

Deep breaths...I'm thinking of you!
  #3  
Unread 09-24-2011, 01:44 PM
Re: Just found out I need a Hysterectomy...a bit panicked

Thanks Posy! I'm actually feeling like knowledge is making things worse for me right now, because of all the things I didn't think about. I've already made a decision to get a second opinion from an endometriosis specialist, just to give me piece of mind....and maybe even to switch to him for my care. It's just all very overwhelming. I have three young children and that makes it even harder for me to find a time that works for our family.

There's just SO much to think about and part of me is just super nervous about a major surgery.

Thanks for your response! I'm glad I'm not the only one that feels in a panic at the beginning!
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  #4  
Unread 09-24-2011, 01:44 PM
Just found out I need a Hysterectomy...a bit panicked

Hi Melissa. Do you know what kind
of hysterectomy you are having? I had a total abdominal (horizontal bikini cut 4.5 inches long) 3 weeks ago. My recovery has been pretty awesome. I, like you, obssesed and googled all the time which in hindsight, was totally unnecessary because it was waaaay easier and less painful than I anticipated. I used to get terrible ovulation pain, bad periods and cramps and irregular bleeding due to fibroids and polyps and large ovarian cyst. My hysterectomy was the best thing I ever did I'm so relieved it's 'behind me', no more pain and worrying. I had 9 weeks between setting date and surgery (too long for a person as detailed as me - I shoulda just booked it for 2 weeks later and not had so long to fret!). Best of luck to you with your decision xoxo
  #5  
Unread 09-24-2011, 01:46 PM
Re: Just found out I need a Hysterectomy...a bit panicked

legal68 - I will be having it done vaginally and keeping my ovaries. My biggest concern is the treatment of the endometriosis....I just don't want that pain to come back after having the surgery!

THANK YOU so much for saying you are happy with your decision. It does make me feel a lot better!
  #6  
Unread 09-24-2011, 04:50 PM
Re: Just found out I need a Hysterectomy...a bit panicked

Hi, I had a vaginal hysterectomy with some repairs as well although I had it for a different reason than you, I had a uterine prolapse so basically my uterus fell and was sticking out of my vagina causing a lot of pain. I am thrilled that I had this done I have no more pain. My biggest advice to you is not to read post op section as it scared me terribly reading all the horror stories of what could happen or did happen to some people. My husband actually threatened to block this site if I did not stop reading the negative stories. I am almost 7 weeks post op and feeling great, my energy level is the same as it used to be I do still have a bit of soreness in my pelvic region, just soreness not pain but my doctor said it will settle down. I wish you the best and I am sure you will feel 100% better after.
  #7  
Unread 09-24-2011, 04:52 PM
Re: Just found out I need a Hysterectomy...a bit panicked

I forgot to mention that once you have had your operation then read post op but the stories still scare me but I am feeling fine so I try not to worry.
  #8  
Unread 09-24-2011, 10:19 PM
Re: Just found out I need a Hysterectomy...a bit panicked

I am 26 and had an abdominal hysterectomy, cervix and uterus, just about 4 weeks ago. Mine was due to a cervix that completly closed after a different surgery. I know what you mean about being young and finding support - everyone I had to turn to were either just having babies or trying. This site has been my saving grace. I only had a few weeks between final decision and go date, but I still did a lot of research. I agree with Ellie, don't read post op until you are post op. There is just no need. The pre op will get you everything you need to know.

What helped me prep for surgery, I'm overly organized, was sitting down with hubby and listing out daily tasks, preparing food ahead, taking care of any deep cleaning (mopping floors, etc) and talking to family about what help I might need. Good luck to you. And use the check points!
  #9  
Unread 09-24-2011, 10:40 PM
Re: Just found out I need a Hysterectomy...a bit panicked

Hi,
Just thought I would point out that endo isnt cured by having a hysterectomy, and while I totally understand why you would (I just did have a hyst on monday) You should definitley be aware that there is a risk of having the pain come back if your doctor misses any endo. I am glad to hear you will be going to see an endo specialist, and I hope all goes well for you.
Merr
  #10  
Unread 09-25-2011, 06:01 AM
Re: Just found out I need a Hysterectomy...a bit panicked

Thanks so much for your answers ladies!

Ellie - I've been avoiding the Post-Op board because I knew it would induce massive anxiety! Thanks for the advice!

Nikki - I'm super organized too! Thanks for the ideas!

Merr - The reason I'm going to see an endo specialist is because my current OB didn't mention ANYTHING about the endo during my appointment to plan the hysterectomy. I mentioned an increase in symptoms since I saw her 2 months ago and she just said that all of that will stop after the hysterectomy. She didn't mention removing any of the endo, so I don't know if that is in her plan.

Anyway....my gut started to tell me to find a 2nd and 3rd opinion from specialists. I looked on the recommended specialists on the Endo board here and found 2 in my area, so it's my plan to call to get appointments with both of them tomorrow morning when their offices open up again. It's too big of a surgery to go into blind and not feeling informed because my doctor isn't communicating with me. I'm not worried about hurting any feelings.

Luckily my hubby is very supportive and will do whatever he needs to do to make sure I get the care I need and can start feeling better for myself and our family.
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