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Wish I could just grow another uterus & cervix Wish I could just grow another uterus & cervix

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  #1  
Unread 01-31-2012, 07:42 PM
Wish I could just grow another uterus & cervix

Hi, I apologize in advance for the long post...really need some opinions...

OK, I keep going back and forth on whether or not I am having a hysterectomy. BTW, doctors are telling me there really isnt a choice, but they cannot make me.

Here is my situation:

Already have had a ThermaChoice Balloon Ablation 10 years ago

Currently have:
1. 2 small fibroids
2. Suspected adenomyosis (75% through muscle wall - per MRI) and a thickened uterus; TVUS revealed 14 mm thickened lining
3. Need sling repair (little bit of bladder falling out of vagina) and cystocele repair
4. Had 4th degree posterior laceration with VBAC 11 years ago with a "self-healed" rectovaginal fistula (never felt like myself since...feel stretched out and deformed)
5. Have unexplained bloating - sometimes I am a size 10, sometimes I look 6-9 months pregnant - gastro blames gyno, gyno blames gastro...oh, yeah, a little abdominal endo
6. Have bi-monthly pain comparable to full-blown labor
7. Doctor unable to get uterine biopsy...full of scar tissue...do I have uterine cancer, who know's...have to remove the uterus to find out
8. Have Factor V Leiden Mutation - Hetero....cannot take any HRT treatment after hysterectomy

My Hysterectomy Hang-Ups:
1. Like orgasms - want to keep having them
2. Sex is already painful, cannot imagine having a shorter vagina (cervix must come out).
3. Afraid of additional pelvic floor dysfunction after a hyster and possible subsequent PFD surgeries
4. Terrified of mesh used in PFD repair
5. If I dont have cancer...I am already used to living in pain...so maybe I should stick with what I know
6. Feel like doctors treat the subject of removing female organs lightly...almost like they are removing a hangnail
7. I am not a number or part of a statistic. I am a living, breathing, intelligent female...I matter...even if only to myself, my DH and two children...I am important!

Dont get me wrong...if I have cancer, I want to live and will do what is required. But, I am tired of friends and family telling me to just grow up and have the surgery. I am a grown up, that is why I am perplexed. My family doctor asked if I wanted more children. I told her, "NO!" She then explained the "why not" philosophy to hysterectomy...you really dont need a uterus anymore. Hello? The uterus is structural, right?

If I could grow another uterus and cervix...this wouldnt be an issue. I know that many of you have felt this way or may be feeling like this now. I know you cannot make the decision for me, but your input would really help me to make heads and/or tails of which way to proceed. Bless you.

BTW, the doctors think I have a year left before "it" (whatever it is) invades the remaining 25% of my uterine muscle.
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  #2  
Unread 01-31-2012, 07:58 PM
Re: Wish I could just grow another uterus & cervix

I really don't know, but from everything I have read on this site so far, sex can still be great and in fact better and less painful after a hysterectomy.
Maybe read some of the posts from women who are happy with their sex life after surgery.
Of course, you should only do what feels right for yourself and your body.
  #3  
Unread 01-31-2012, 08:14 PM
Re: Wish I could just grow another uterus & cervix

I had my removed and sex is still good... no issues on having an orgasm and no pain.

You must be in a great deal of pain. I was. I had Adeno too. It was not until 2 months after my Hyster that I realized I was living with more pain than I thought I was. I look at my old pictures and even in happy times you can see pain in my eyes. Everyone I talk to says that I look younger. Pain has a way of aging you before your time. My eyes are bright now...
The pain will get worse. Not trying to scare you but that is what Adeno does. It gets worse. Now if you really want there is a doctor in Florida that has come up with a way to deal with it with no hyster needed. it is called the Osada procedure. It still means surgery and it can not be doe by DVH or LVH it has to be done with major surgery.
No one should push you into to having surgery but I can only say that for me it was the best thing I ever did.
Good luck on your choices...
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  #4  
Unread 01-31-2012, 09:31 PM
Re: Wish I could just grow another uterus & cervix

I think you've made your choice. I wanted my hyster badly and had a very hard time understanding why anyone wound want to keep these organs that were slowly ruing our lives. After spending time at this site, I've come to understand how personal and emotional this choice is for a woman. I read your reasons for the hyster and what I saw was a very strong woman having to choose to let go of something she's controlled for so long. All of us have endured years of unbelievable pain; not only endured, but adapted our entire lives around shoving the pain into a tiny, evil ball deep inside us, calendaring every moment around our acess to pads/tampons and a bathroom only to lose our organs to surgery due to our malfunctioning parts. Your concerns about sex are valid, but I have to believe it will only improve for you due to the physical repairs but also your very strong desire for it to be so. I'm glad you are here. You'll meet women who have had similar issues and how they've overcome them. On a simplistic level, it's just plain okay to give in and get back to the life you were really intended to have. I'm just now learning to accept an invite out without wondering how many pads and tampons I'll need. I wish you peace.
  #5  
Unread 02-01-2012, 08:51 AM
Re: Wish I could just grow another uterus & cervix

This is your decision alone so all I will say is .. get a 2nd, 3rd or 4th opinion on whether or not the hysterectomy is necessary.

When I started having the issues with my periods I talked to my main GYN and he said 'just age" .. when I switched GYNs he started telling me yea we see where the issues are coming from. My doc didn't do the DaVinici procedure so he referred me to another doctor in the practice who concurred with my doc. My 4th opinion actually came from my primary care doctor. Once she heard what I had been going through and what the GYN suggested she agreed with my GYN.

I had fibroids, something I can't spell and scarring from my c-sections. According to the surgeon the scarring is what was causing most of my discomfort He stated my uterus was attached in places it shouldn't have been and I suspect this was causing pains in my legs and other issues.

I can't talk much about sex afterwards b/c I'm not cleared to do that yet.

Make sure if you do decide to do it ask all the questions you wish of your doctor.
  #6  
Unread 02-01-2012, 11:51 AM
Re: Wish I could just grow another uterus & cervix

I had adeno, rectocele, my uterus was tipped due to all the pressure (annuals were a nightmare), growths in my uterus which made it the size of a 10 week pregnancy and would continue to worsen. Sex was painful though still enjoyable. Still I had no idea the pain I was living with and no idea what it was doing to my quality of life. The fact that I could not keep a tampon in place any more and the constant UTI's finally forced me to see my gyn about rectocele repair. She was a new doctor for me and she told me she recommended a hyster and that the scope was beyond her ability. She referred me to a wonderful surgeon who mostly has cancer patients. He has a very skilled touch.

Here I am nearly 9 weeks post op and I feel better than I have in YEARS. I truly did not know how bad it was because it crept up on me and I thought it was part of getting older. Sex so far is amazing though we are still in the early stages post op so I know it is going to get even better.

That being said you have to decide that this is best for you. Two or three years ago I would have not even considered a hysterectomy. I was not ready to give up that part of my womanhood. If you can then take your time. Get a second or third opinion. Think or pray on it.
  #7  
Unread 02-01-2012, 12:34 PM
Re: Wish I could just grow another uterus & cervix

i have adeno,and i can say that the pain has gotten much worse over time. I cant wait til its gone. But you can only do whats right for you. do your homework, talk it out. ask questions!
  #8  
Unread 02-01-2012, 02:39 PM
Re: Wish I could just grow another uterus & cervix

Wow, I always wanted a sister. I feel like I have a bunch now...and my sisters are all very wise. Your input means the world to me. Whichever way I go, I know that I will reflect often by reading my post and replies.

I do not see the pelvic floor dysfunction doctor until March, unless someone cancels. In the meantime, I am going to research, research, research.

Bless you all. Please keep the advice coming.
  #9  
Unread 02-01-2012, 04:15 PM
Re: Wish I could just grow another uterus & cervix

lynnabart!!

Wow, you have A LOT going on!! It is so good to know that you are not taking this decision lightly and you are trying your best to arm yourself with information.

One thing you should definitely do is get a 2nd opinion. It never hurts to get one more point of view on this, so you could even get a 3rd, 4th..and on and on.

Now...as far as your concerns about having the surgery...

1. MY sex life is better than it has EVER been!! I had my cervix removed and I do not feel like I am "shorter" and my husband says he cannot tell a difference at all. My orgasms are more frequent and more intense and that alone has made my decision to have the surgery worth it.

2. Again, sex is better than ever... no more pain, only pleasure!!!

3 & 4. I understand your fears of PFD...it is a fear I'm sure we all face at some point on this journey. It sounds like you have already had some issues with it and those repairs would be made at the time of the hyster, therefore hopefully preventing future surgeries (although, unfortunately, you just never know)

5. Women are used to dealing with the pain in our lives. I still say that we are by NO MEANS the "weaker sex", but it sounds like you are in a LOT of pain and quite often. I was in a lot of pain too (Stage IV endo) and I personally didn't even realize just how awful I felt....until I felt better. I am now going on 9 months of being pain free and I have lived more in those 9 months than I have in the last 5 years!!!

6. Yes, it does seem like doctors take removing our female organs too lightly. It is not a decision that should be taken lightly and should always be your last option (IMHO). Only you can make that choice. Doctors can advise you all they want, but you always have the final say.

7. Yes, you are a living, breathing, intelligent female, and you DO matter!!! This is your body, your life, your fears, and your health. You are doing the right thing by getting all the information you can before making a decision that will change your life.

It is not an easy decision to make. I will not pretend that it is, but you need to do what is right for YOU. You should do what feels right in your heart!! You have come to a wonderful place to find information.

Know that all of your sisters here are behind you 100% in whatever you decide to do. We will be right here with you through this journey!!

Take care, and to you!!!

  #10  
Unread 02-01-2012, 06:31 PM
Re: Wish I could just grow another uterus & cervix

Yay traeleigh!!! Very well put. I am 3 weeks and 1 day post op. No, I have not been cleared for sex....so I can't say on that part yet. I will tell you, that I did not know how much pain I was in!! I already feel like a NEW me. Take your time and get another opinion.
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