Decided no hysterectomy but after exam, gyn thinks I should - Concerns about sexual dysfunction

I recently found out I have a cystocele, rectocele, prolapsed bladder & prolapsed uterus that is approximately 12 weeks in size due to 2 fibroids. After doing my research, I decided to not have a hysterectomy. They will use mesh to tack up my uterus. I had my yearly exam today & my gyno thinks I should have a hysterectomy because my uterus is more like 14 weeks in size. She think that because my uterus is so enlarged that the mesh might not hold up long term. So now I'm back in freak out mode. My surgery is next week & I need to call the surgeon to tell him I need to add the hysterectomy back to the plan, but I am scared out of my mind. I have read so many stories on this page about sexual dysfunction after hysterectomy & I am afraid to risk it. How do you make this decision? How do you make a decision that could ruin your sex life? Then there's the stories of pain years later & not feeling "yourself" after. I don't have any pain or crazy bleeding from the fibroids so it seems aggressive to remove my uterus. If I don't do the hysterectomy now & could be back in surgery in a few years being forced to do it to correct a prolapsed uterus again with bigger fibroids. I'm so tired both physically & mentally with this decision. I'm not sleeping much & it's constantly on my mind.

I'm sorry that you're faced with making this decision. It sure would be easier if we could see into the future to know what our outcome would be.

Not everyone who has a hysterectomy will experience sexual dysfunction. It can seem that it's very common since women do post here about it, but keep in mind that people search for support when there are problems, and aren't so likely to post about experiences if everything is going well. If you keep your ovaries, that can work in your favor. My own sexual dysfunction had nothing to do with the removal of my uterus, but everything due to having my ovaries removed (oophorectomy). Finding the right hormone therapy was the fix for that. If you have the LAVH, your cervix will be removed. My cervix was removed when I had my TAH and I've never missed it. I was prolapsing and it was in the way for intercourse, so I was happy to have it gone. Some women find it pleasurable to have the cervix bumped during intercourse, and if that's the case for you, it's another factor to consider. Removal of the uterus will result in the loss of uterine contractions with orgasm so again, consider that aspect if it's something you experience and don't want to lose. Satisfying orgasms are absolutely possible post-op. We have lots of members who say sex is the same or even better after surgery. However, as you know, there are others who find it's not the same at all and they regret having had the surgery.

You may find it helpful to seek out yet another opinion. If you could go to a doctor not associated with the practice you go to, possibly even in another city, you may get better clarification on what would be best for your circumstances. It all comes down to researching, getting multiple opinions, trying viable alternatives and deciding at this moment in time what is best for you. Doing all that can help eliminate the "what if" thinking if things don't work out as you had hoped.

Good luck to you!

I posted my frustration about not being able to ask questions to people who are post op, since I'm not post op yet.... If you're trying to make a decision, glean as much first hand experience as possible to help make this decision, wouldn't it make sense to be able to ask these individuals information?

The majority of people who post in the Post-Op forum are 1-10 weeks out from surgery, and most are still in the middle of their recovery restrictions and are worried about post-surgical pains and strange symptoms. The ones who are getting back to sex are usually just starting to get back to it. Some do well and never post about it. Most of the ones who post about it experience nervousness, disappointing first times, and occasionally pain and/or bleeding.

There is a separate forum on this site for women who experience long-term sexual dysfunction. At 4 months post-op, i can read that forum but not yet post or reply in it. I've lived with sexual dysfunction off and on for a very long time - but my sexual dysfunction was not hysterectomy-related, and there's a difference.

The restrictions on who can post where exist so that each area of this site can be focused on the thoughts, experiences, and needs of women who are going through one particular set of experiences.

Since people who are post-op are allowed and encouraged to answer questions in Pre-Op and Options and Alternatives, your question is well placed in these forums. I'm hoping you get several answers in addition to mine and April Dawn's.

So - without further ado:

I understand feeling worried about a surgical injury ruining your sex life for the rest of your life. You should be aware that there's a risk of surgical injury with mesh repair too, though. But having untreated pelvic organ prolapse also is associated with decreased sexual function... So ask your doctor lots of questions, look at whether you have any risk factors for surgical injury, and make the best choice you can.

Be aware that if you have either of the proposed surgeries, it WILL put your sex life on hold for a while. For prolapse repair, the normal restriction looks to be 6 weeks. If you choose a hysterectomy with repairs to the cystocele and rectocele, you'll have incisions in the vagina itself as well as the area where the uterus used to be, so you're probably looking at 8-10 weeks or more (but ask your doctor). It is very important that you wait, because failing to do so can cause significant injury. Once you are cleared for sex and mentally and emotionally ready for it, there are some predictors of how your sex life will be.

One of those predictors is what happens with your ovaries. If your ovaries are removed along with your uterus, that will put you in surgical menopause and significantly alter your sex drive and sexual response (as well as many other aspects of your life. Women who have a hysterectomy and keep their ovaries typically end up with more or less the same hormonal levels as before the surgery, but may go through a period of hormonal disturbance because removing the uterus cuts off one of the sources of blood supply to the ovaries. Having a mesh repair does not risk this disruption of the ovaries.

Another big predictor is how good your sex life is now. If you currently have a satisfying sex life with a partner who is good about giving you pleasure, it will most likely be significantly easier to find your way back to a happy sex life than if you do not.

A third major predictor is how well you deal with vaginal discomfort and pain, and how that affects your emotional and mental readiness for sex. I deal very poorly with that and it significantly disrupts my sexual response - so, i'm currently having a hard time. I don't know if this will be a long-term thing for me or not. I was dealing with pain and discomfort for years before i chose the hysterectomy, and at least now the pain and discomfort i'm experiencing is different, and there's a possibility it might go away.

And then there is depression. Those of us who live with depression are more likely to experience decreased sexual function after any surgery.

I was very young the first time a doctor told me i "needed" a "routine hysterectomy". I was only 31, and my fibroids were not bothering me at all at that point. I was not ready to take on the short-term discomfort of recovering from surgery or the long-term implications of a body without a major organ. I chose to wait until my symptoms were bothering me enough for the risks to be worth it.

Here's a thread from a few years ago on this topic:
https://www.hystersisters.com/vb2/sh...d.php?t=240295

Just the word combination "routine hysterectomy" makes me shudder. There is no such thing. It is a MAJOR surgery. Doctors have long pushed it on women a) due to the overall ignorance in gynecology; b) hysterectomy is a very lucrative procedure. Your doctor has a direct monetary interest in recommending this procedure, and downplaying the long term effects. And if you have any negative effects, rest assured, you will be told that this is uncommon, and NOONE of his patients had anything like that. My surgeon actually told me that he had women coming back to him saying how much they hated him for what he had done to their bodies. He just dismissed them as "silly women".

I am 4 years post hysterectomy, never had a sexual disfunction prior to hysterectomy, and my sex life went to sh&t after that. Sex without a uterus and cervix is way less satisfying. Vagina feels bottomless. Orgasms less intense. It's just not good.
I mean I know that some women had some major problems prior to the surgery, like prolapse, so for them it is probably better, but for someone like me, with no structural issues, it was a disaster. (I had my surgery due to early stage endometrial cancer, and I can tell you that I felt better before the surgery than I do now).

it sounds like you could use a second opinion where you tell the dr. what you are thinking and what you want and see if it's possible. with a prolapsed uterus, is the cervix removed also? do lots of research and get as many opinions as you need until you are comfortable. postpone your surgery until you see other dr's. i had only my uterus removed (kept my cervix and ovaries) and my sex life is great even 14 years later. of course there was no guarantee that i wouldnt end up with sexual dysfunction. thankfully i didn't but i did go into my surgery completely sure i was having the surgery i wanted to have.

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Originally Posted by Yoda2020 I posted my frustration about not being able to ask questions to people who are post op, since I'm not post op yet.... If you're trying to make a decision, glean as much first hand experience as possible to help make this decision, wouldn't it make sense to be able to ask these individuals information?

A few like me, who are post op 7 years now read the pre op and other sections and respond, so no need to go to post op for that.

I answer that no one can make that decision for you, many have good experiences and are glad they had the surgery, some others have issues.

The key is to understand the diagnosis and seek a second opinion and research to make an informed decision

Is it an option to fix the prolapses with use of your own tissue v. the use of mesh? This is how it was done before the use of mesh. In regard to the fibroids have you considered Embolization (Ufe)? The fibroids will stop growing and possibly could shrink over time. Mine shrank a lot. Food for thought to keep things as simple as possible.

It all boils down to YOU have to know YOU made the right decision for YOU or you will always doubt your decision. Decide if you trust your Dr. If you do then go with what they suggest. If you don't trust your Dr. then you could get a second or third opinion. I had everything removed and had my cystocele and rectocele fixed. For me sex is much more satisfying now that my prolpase is fixed. Having the prolapses made me feel loose and caused all sorts of sexual issues. I don't have a uterus or cervix anymore and I am able to orgasm just as before with the same intensity. I believe having the correct HRT helps with that too. I think every woman is different though. For example I'm a VERY analytical thinker. If I'm having sex and my mind wanders to my cervix and I start wondering if it will feel different then I have a hard time getting aroused. If I refuse to think about my cervix during sex and get my mind on my husband then there is no difference in sex for me. So it really depends on how you process the removal of your cervix and how you feel about it. Some women say it ruins their sex life. Some say it doesn't make any difference. Then there's me and I say it ruins my sex life if I overthink it but it's no problem when setting my thoughts aside. LOL. The problem is once you have all of that going on the fibroids more than likely will grow and could cause more prolapse. I had a Dr. that I trusted 100 percent. When he told me I needed the hysterectomy with the repairs I just went for it. I don't have any regrets.

People almost never post stories about not having problems with their surgery. Just like people are far more likely to write negative Yelp reviews than positive ones. Over 600,000 women have hysterectomies in the United States alone. The majority experience a better quality of life after their procedure than before.

I agree with the comment above...it seems like you should get a second opinion. Whether or not you have the surgery, it seems like you don't have a good level or trust or rapport with your current doctor.