hysterectomy or paravaginal repair?

Hi everyone. Thank you for taking the time to read this, I am hoping someone will be able to help. I have 2 different diagnosis with 2 totally different treatment options. I originally went to my dr. about a "lump" in the vagina..extremely noticeable when sitting on the toilet..it decended to the opening.(anterior wall and the cervix). She said it was a grade 1 cystocele and there wasn't anything that could be done unless it got worse. I went for a second opinion and was told I had a paravaginal defect, grade 1 when lying down and between a grade 3 and 4 when standing/squatting. This dr. wants to do a laproscopic paravaginal repair. He says he sees the surgery being a great success but afterwards all I will need to do is jump and it will fall again. This dr. is a new dr. (just finished his residency Aug. of 2005)
So I went for yet another opinion of a dr with 10+ yrs of experience. I told them of the previous diagnosis and he said he's never heard of a paravaginal defect. He didn't notice anything in the initial exam so I made him do the pelvic exam standing just like the last and he notice a dramatic difference. His repair option is to remove my uterus. He told me that my uterus is putting pressure on my bladder allowing it to "drop". He said my uterus needs to come out through a large incision in my abdomen along (says taking it out any other way can cause more prolapse). Then he would put everything he finds out of place back in it's original place.
this is all new to me. I just turned 30 in dec. and all this started over the summer. I'm not sure what the best approach is or what I should do. Nobody I know has been through this sort of thing so it's hard to find someone to talk to about it and the dr's aren't very helpful since one doesn't agree with the other.
If anyone has any advice, please let me know!! I think I'm pretty much desperate at this point.

Hi Rachel - I'm sorry to hear of all your difficulties at such a young age. I don't have the problems you have and I'm 56, but I just wanted to say. Please do as much research as you can before making your decision. Once you have a hysterectomy it cannot be "undone" and may have long term effects.

If this is really not causing you problems like incontinence or pain or discomfort when sitting or standing you might want to wait awhile and see what happens. Last year I was told I needed a hyst for abnormal bleeding by 3 doctors (2 gyns and one oncol/gyn) and I was convinced until I saw the 4th doctor (another oncol/gyn)and he said he didn't think I did. Now the problem seems to have resolved itself and I am so glad I didn't rush into surgery.

I know you may think you are seeing a lot of doctors but try consulting with another one and be very comfortable with your decision. You can also "google" all the terms you have been given and do lots of research. Sometimes it makes you more confused, but I think more knowledged is better than less.

Good luck and keep us posted on your progress.

Mary

Hi Rachel_B,

I had a similar thing happen with my hyst. I got two very ~different~ opinions on how to proceed with my fibroids. In my case, I went with the 2nd opnion since I thought that was the best decision for me. It felt right.

It sounds like from your post that you are not sure about either opinion. Maybe you felt after two opinions you would feel like you had more direction on what to do and instead it feels the opposite. Hang in there.

I agree with March 1949. Get a ~3rd~ opinion to mix it up. Not that you are looking for agreement on door #1 or door #2 as much as what opinion ~feels~ right for you. A hyst is major surgery and something to really think about. It sounds like the 1st Dr. wants a less invasive approach and the 2nd a more evasive approach. It could be a difference in their medical trainings. So, adding one more opinion can give you more to work with. I know for me I had to rely on my ~gut instinct~ on what felt right for me. Go with that in your decision too. Drs cannot tell us what to do - they can really only suggest.

Good luck. We Hyster Sisters are here to help if we can.

Mary

You need more opinions. I recommend consulting with a urologist also. A urologist might have a different opinion on the fix. A primary question might be would a hysterectomy possibly make things worse? Is a hysterectomy necessary to fix this problem?

If a repair without hysterectomy is possible it might be the better way to go. My personal lesson learned through my adventures in surgery was this: You can always go back to do more if it is needed. There is no reason to expose yourself to any more risk than is absolutely necessary.

Some years back I had a rectocele repair without any other surgery. The gyn at that time offered to do a hysterectomy. I think some gyns really like doing hlysterectomies. She told me at that time that I also had a small cystocele. I elected to have only the rectocele repaired. That small cystocele was never discussed again. If I have one it doesn't bother me.

Thank you all so much for replying!! I do have symptoms from it, which is why I originally went to my dr. It started with urinary frequency and urgency. I couldn't seem to get out of the bathroom. Then came the pressure and the fullness and the difficult sex since it seems to be so "crowded" in there. My partner has even noticed a difference. When I look back..I think the very first symptom was a distended abdomen. All my life I was 120lbs, 125 max. I could not gain weight no matter how hard I tried (and I tried very very hard). When I was pregnant I gained 20lbs but lost it all as soon as my daughter came out (went home from hospital with flat stomach). Then over this past summer, my stomach got bigger and I started staying in the bathroom more and more. I now weigh 145 and the only thing that's gotten bigger is my stomach. I'm not pregnant and I don't eat very much. I never have. (If I go to McDonald's for example, I can't finish a burger and fries.) I always get a "full" feeling. Might be a part of all this, that's the only reason I put it in here.
My uterus is retroverted, I learned through the ultrasounds they've done. I thought it was prolapsing because my cervix will reach the opening when I squat or sit on the toilet, and I thought that was causing my abdomen to distend. When I asked the dr. all they said was "it's possible".

My own exam, as embarrassing as this is, says my cervix has moved down ALOT, and the entire top (anterior) wall has nothing to it, no tone, no nothing. It feels like if it wasn't connected to the cervix, it would be completely out. If that makes any sense. Trying not to be too graphic. Kegels, I've found, do absolutely nothing for this problem.
Thank you, I will look for a 3rd opinion. I wasn't sure what the normal approach was for this sort of thing, especially since my dr's didn't agree. I liked the idea of the paravaginal repair, but I didn't like the idea of just jumping and having to repeat it. Something just didn't sound right there. Then the partial hysterectomy sounded good since it removed other problems as well (painful sex, somewhat heavy periods) but it has alot of surgery risks that I don't think I'm ready for. I've never had surgery so I'm a bit terrified of the idea.
Thank you all so much!!!

Rachel,

have any of the doctors mentioned either fibroids or endometriosis? A lot of your symptoms sound like my fibroid symptoms.

I also agree with seeking out a urologist's opinion. Also, have you looked into the background of the Docs? I know you said one was new. I think you can go to the website for American Board of Obstetrics and Gynecology and see if your doc is a "fellow". Maybe google your doc's name and try to see a doc who is a 'fellow" of their specialty.

I wish you the best of luck in this process.