Hysterectomy questions

Can't orgasm, pain during intercourse, etc.
gijoe88

Hysterectomy questions

Postby gijoe88 » Wed Feb 26, 2014 1:06 am

My wife miscarried with our first pregnancy and ended up having to have a D&C after the miscarriage. Well unfortunately my wife ended up having to have a D&C and a Laparoscopy due to continuous bleeding and endometriosis after the miscarriage. Ever since, her sexual desire has progressively declined over the years. We have only been married 5 years but her sexual peak has drastically declined and her ability to O had decreased as well. We have sought DR's advice and are reluctant to a full hysterectomy at her age as she is only 24 yrs old. Although we do not plan on having any more kids we still want to have a "young" sexual desire. Has anyone had a partial hysterectomy on here? Please reply with any add. info or similiar circumstances. Thanks!

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Re: Hysterectomy questions

Postby robin » Wed Feb 26, 2014 2:10 pm

Welcome to TMB.

First of all, there is no such thing as a "partial" hysterectomy. That term is colloquialism Hysterectomy is surgical removal of the uterus. Surgical removal of one or both of the ovaries is called an oophorectomy.

I had a hysterectomy at age 23 and it was done within months of losing our third baby (our other kids were 1&4 at the time) and multiple surgical attempts at repairing the damage and saving future fertility. It sucked to have our fertile years over and done with so soon, but given all the problems I was having it had to be done. One of the best decisions of my life. No more periods from hell that would play fake out on whether or not they were done. No more cramps and sickness. It was all over. My doctor was hesitant to perform such a surgery on a 23 year old but he was out of options.

I originally just had the hysterectomy and kept my ovaries for hormones. Big mistake. Eight months later I was back under the knife for the oophorectomy because my ovaries were all caught up in scar tissue and covered in cysts so they had to go. The surgeon who removed the ovaries said 80% of women who have a hysterectomy and leave the ovaries end up back under the knife within two years and that he wished doctors would quit trying to leave ovaries, especially in young women because the ovaries atrophy and quit supplying hormones within two years anyway. He also advised me to use the bare minimum of hormone replacement therapy because at my age my adrenal glands, and body fat would produce all the hormones I would need once they had a chance to adapt. Sure enough, they did, I don't even use hrt anymore. I have a super high testosterone level which is nice for sex drive and my estrogen and progesterone are at decent levels without any hrt. The only thing I would change is that my hair used to be really super thick and within two years of losing my ovaries it changed to fine, however all is not lost because now I can have it past my shoulders without getting headaches.

Sex was an adaption, but we communicated and it worked out just fine and then it became even better and better. Nearly 20 years later I wouldn't change it for anything.
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Re: Hysterectomy questions

Postby seeking perspective » Wed Feb 26, 2014 2:36 pm

I strongly recommend that your wife become a member at HysterSisters.

In addition to a discussion forum (similar to TMB), there are lots and lots of articles and videos. In addition to asking for the input of other women who've had their hysterectomies young, there is an endometriosis forum she will find helpful. One thing to know is that a hysterectomy does not cure endometriosis--even though it typically reduces pain. The women in the endo forum will be able to explain the ins and outs of this.

I was in my mid-40's when I had my hyst, but the site was a tremendous resources for me, not only because of the information but also because of the helpfulness of other women who have walked the same journey.

Feel free to PM me if you have any questions about the site.

ETA: It is a site for women only, so your wife will need to be the one to join and post.
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Re: Hysterectomy questions

Postby OldBear » Wed Feb 26, 2014 3:27 pm

Great post, Robin, from a young (when you had your hysterectomy) woman's perspective and the happy ongoing story of a fulfilling sex drive and experience.

Here's an older man's POV with his DW who had a hysterectomy and oophorectomy in year 26 of our over 40 year marriage. My DW has always had a LrD than me. That drive level never changed. She did go on an HRT for a time, prior to the more recent universal view of its far greater risk than benefit - no HRT for DW in over 8 years. She seldom has hot flashes anymore.

Our marriage and marriage bed have always been great and although our marriage bed is different (variety and routine) in our mature years, it is most satisfying for both of us. Two specific changes that I've observed and DW has expressed since her surgery (instant menopause in the rear view mirror) resulting in typical body chemistry changes are: lubrication and climax. In DWs case, she has not lost her youthful level of foreplay lubrication (maybe it's because she gets horny very easily) although we have always used CO for maximum enjoyment. Moreover, we have perfected g-spot massage in the last 5 years, and she now generates a fair amount of FE. In recent years, she has told me that her climax is much different than in younger years (DW has a single, massive O and is then spent). As she puts it, her youthful Os we're distinct and like fireworks shooting skyward with a tremendous booming explosion. Now her Os build slowly, and go off like the cascading boomlets of a multi-stage firework (all one O, but longer and sustained). DW attributes the change in sensation to her loss of parts and their biochemical contribution. From my vantage point her Os in our senior years are more delightful based on her major and lengthy vocal outburst when she Os. Good thing we are empty nesters and live a long way from our neighbors. :D

I share this, GiJoe, to encourage you and your DW! No doubt other TMBers (females, in particular) will have different experiences, but we are a poster couple for a sex life that did not dissipate, rather flourished, post-hysterectomy.

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Re: Hysterectomy questions

Postby seeking perspective » Wed Feb 26, 2014 3:43 pm

OldBear wrote:
I share this, GiJoe, to encourage you and your DW! No doubt other TMBers (females, in particular) will have different experiences, but we are a poster couple for a sex life that did not dissipate, rather flourished, post-hysterectomy.

That was the case with us, too. My constant and worsening pain drained me of energy and made it very difficult to want to be sexual in any way (at one point, any arousal at all led to excruciating pain). After the pain was gone, I was able to deal with the underlying causes of my refusal. Sex is way, way better now than it ever was before.
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gijoe88

Re: Hysterectomy questions

Postby gijoe88 » Thu Feb 27, 2014 8:51 am

robin wrote:Welcome to TMB.

First of all, there is no such thing as a "partial" hysterectomy. That term is colloquialism Hysterectomy is surgical removal of the uterus. Surgical removal of one or both of the ovaries is called an oophorectomy.


Types of hysterectomy:
•Partial, subtotal, or supracervical (soo-pruh-SER-vi-kuhl) removes just the upper part of the uterus. The cervix is left in place.
•Total removes the whole uterus and the cervix.
•Radical removes the whole uterus, the tissue on both sides of the cervix, and the upper part of the vagina. This is done mostly when there is cancer present.



seeking perspective wrote:I strongly recommend that your wife become a member at (website)


My account does not have permission to post links or domain/page references. How do I change that?

Thanks for your input and suggestions! I will tell my wife about that site :)

OldBear wrote:
Here's an older man's POV with his DW who had a hysterectomy and oophorectomy in year 26 of our over 40 year marriage. My DW has always had a LrD than me. That drive level never changed. She did go on an HRT for a time, prior to the more recent universal view of its far greater risk than benefit - no HRT for DW in over 8 years. She seldom has hot flashes anymore.

Our marriage and marriage bed have always been great and although our marriage bed is different (variety and routine) in our mature years, it is most satisfying for both of us. Two specific changes that I've observed and DW has expressed since her surgery (instant menopause in the rear view mirror) resulting in typical body chemistry changes are: lubrication and climax. In DWs case, she has not lost her youthful level of foreplay lubrication (maybe it's because she gets horny very easily) although we have always used CO for maximum enjoyment. Moreover, we have perfected g-spot massage in the last 5 years, and she now generates a fair amount of FE. In recent years, she has told me that her climax is much different than in younger years (DW has a single, massive O and is then spent). As she puts it, her youthful Os we're distinct and like fireworks shooting skyward with a tremendous booming explosion. Now her Os build slowly, and go off like the cascading boomlets of a multi-stage firework (all one O, but longer and sustained). DW attributes the change in sensation to her loss of parts and their biochemical contribution. From my vantage point her Os in our senior years are more delightful based on her major and lengthy vocal outburst when she Os. Good thing we are empty nesters and live a long way from our neighbors. :D

I share this, GiJoe, to encourage you and your DW! No doubt other TMBers (females, in particular) will have different experiences, but we are a poster couple for a sex life that did not dissipate, rather flourished, post-hysterectomy.


I appreciate your post OldBear...its good to hear from your point view as well on this topic! It is also reassuring to me to know that others have experienced a vibrant marriage bed post-hysterectomy. Im not sure if I look forward to the dynamic change that will come with it but maybe it will be better for her (& me) in the long run.

Thanks again for each of your posts and prayers!

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Re: Hysterectomy questions

Postby robin » Thu Feb 27, 2014 4:14 pm

gijoe88 wrote:Types of hysterectomy:
•Partial, subtotal, or supracervical (soo-pruh-SER-vi-kuhl) removes just the upper part of the uterus. The cervix is left in place.
•Total removes the whole uterus and the cervix.
•Radical removes the whole uterus, the tissue on both sides of the cervix, and the upper part of the vagina. This is done mostly when there is cancer present.


My gynecologist said that each term had a different meaning to each surgeon and they weren't always the same and if a patient always thought a "full" was something different than what her previous doctor told her a "full" was she was more likely to misrepresent what had actually been removed and what had been left to every doctor she saw for the rest of her life and thereby run the risk of not getting the care she needed because she couldn't be diagnosed properly. I ended up having my last surgery with a surgeon who saw a LOT of ladies AFTER they already had a hysterectomy and were still having problems that they didn't think they were supposed to be having. Lack of education was one of the main reasons he cited for that. Not to mention it was during the big "elective" hysterectomy phase in the mid 90's which ended up causing a lot problems and one of the main reasons why it's far more difficult to walk into a gynecologist and simply request to have your uterus yanked out now days. I got a big long lecture on it, got sat down with the plastic reproductive system and given a copy of a sample surgery report so I knew what I was signing away on the consent form. so I just try to spare others the rude awakenings some ladies had. It's not you can open your body up and check once it's over.
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Re: Hysterectomy questions

Postby ledgemoor » Mon Mar 03, 2014 3:41 pm

Sorry she is going thru this.

Before getting a hysterectomy, there are other options to explore. And if it turns out she needs one, please consider leaving her ovaries. More details below.

Our story is that DW had endometriosis and fibroid tumors. She was trying to avoid a hysterectomy, hoping that her symptoms would improve after menopause. Her gyn prescribed progesterone pills which helped. Menopause came and things were pretty good, except that she just wouldn't stop bleeding. She went to a bioidentical Hormone Replacement Therapy doctor, who helped a lot with libido, etc.. The bleeding lessened but wouldn't go away. So she went for a biopsy, and found she had endometrial cancer.

So she had a complete hysterectomy, (uterus, cervix, and ovaries). It was a nightmare. She says she will die before having surgery again. We spared no expense to get the best treatment possible, including "minimally invasive" DaVinci robotic surgery. The surgery was performed thru five little incisions which they covered with a Band-Aid when they were thru, and her vagina.

She could barely get out of bed for two weeks, ten weeks of no sex, and a year to get back to normal. Her poor vulva was torn up worse than having a baby.

Even though she was post-menopausal, losing her ovaries was devastating. Her vagina had this white discharge that we thought was a yeast infection. It turned out that it was from her vaginal wall deteriorating, due to lack of estrogen. Her pubic hair fell out. Her personality changed, and sex was difficult.

Fortunately, thanks to bHRT, she is in good health, sex is great, and she has been cancer-free almost five years, at which point she is supposedly out of the woods.

Now, her hysterectomy is worst-case scenario. They did some exploratory surgery looking for cancer, which your wife won't have. But my point is that it is major major surgery under the best of circumstances. Before considering one, I would definitely give bHRT a try.

As for her leaving her ovaries, this was not an option for DW due to the cancer, and I have not researched this. Possibly technology has improved since Robin had hers. I have a friend who needed a hysterectomy due to pelvic floor issues. Her husband and I are very close. The doctor planned to remove her ovaries only if they were readily accessible. I told him basically what I have written above, and suggested that they research the pros and cons of leaving her ovaries -- risk of interrupting blood flow and them dying anyway and the risk of ovarian cancer which is hard to detect, vs. having normal hormone levels.

So they carefully researched it, and decided to ask the doctor to leave them. He was agreeable. He told them after the surgery that even if they had not asked him to leave them, he would have left them anyway because they were difficult to access.

I have another friend who is a nurse, She had a hysterectomy 12 years ago, elected to kept her ovaries, and they are still working fine. So removing them is not mandatory by any means.
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Re: Hysterectomy questions

Postby robin » Mon Mar 03, 2014 9:44 pm

Ledgemoor, do you think any of your dw's issues had to do with the DaVinci method? I ask because while we were out of town this month where we were staying had cable and we noticed a TON of commercials regarding a class action lawsuit due to complications (painful sex included) women have had after having a DaVinci used during their surgery.
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Re: Hysterectomy questions

Postby seeking perspective » Tue Mar 04, 2014 5:22 am

Those don't sound like the kinds of problems I usually hear about with DaVinci, although a damaged vulva is a new one for me. I had a total vaginal hysterectomy (no external incisions at all), and it was a year before I was fully recovered as well. It IS a major surgery and should be done only after exploring all possible options and getting a second opinion.
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Re: Hysterectomy questions

Postby ledgemoor » Tue Mar 04, 2014 3:51 pm

Oh Robin, I hope not. But thanks for bringing the lawsuits to my attention. I researched it for about an hour, and it seems that the class action lawsuit never materialized. There are a lot of lawyers advertising "if you were injured during robotic surgery...." I would love to be a lawyer with a client who was injured by it. Show a picture of the machine to the jury -- it looks absolutely dreadful. There was one settlement that I was able to find, but there doesn't appear to be any widespread problems, and nothing like a flawed concept or implementation that would put everyone having surgery with it at risk for poor outcomes. Most of the law firm web sites focus on training and maintenance issues.

In researching it before the surgery, we got a second opinion from a major university teaching hospital. They did not offer robotic surgery at the time, so figured they would be at least objective if not biased against it. But the surgeon we talked to said there was nothing whatsoever to disrecommend it. My main concern was reliability, but it essentially has a spare arm, and our surgeon had only minor problems one time in the 800+ times he used it. There is a second surgeon and a technician from the DaVinci company there.

So while I don't think the thing is all it is cracked up to be, it does appear to be the lesser of the evils. The doctor who diagnosed the cancer told us the surgery would involve an incision from her hairline to between her belly button and ribs. The university doctor would have done it laparoscopically thru a 4" incision. The device is smaller than any hands or fingers, offers better vision to the surgeon, and more flexibility and range of motion than any human hand. 80% of prostatectomies are now done robotically. If I needed one, that is the way I would go.

BTW, for anyone reading this, "robotic" is really a marketing term. The machine is not automated in any way. It is just a fancy extension to the surgeon's hands and eyes. I asked the doctor if I could use it to replace the back spark plug in my van :D.

We asked the doctor why she wasn't recovering as quickly as we had been told, and he said it was probably because she is so small. I told him he knew what size she was before he operated. She's normally a tough bird, having large babies 100% naturally without it being much of an ordeal. His experience with people her size is limited no doubt.

I believe the main problem was hormonal. Our mistake was not getting her on bHRT right away. The oncologist was dead-set against it, and you tend not to dismiss advice from that sort of people lightly. But how can you heal when your general health is so poor that your vagina is dying and your hair is falling out? Fortunately the university doctor felt the risk of HRT was acceptable, so that put our mind at ease a little.

Seeking perspective, the vulvar damage wasn't the fault of the DaVinci, but from removing her uterus thru her vagina. It looked horrible, LOTS of bruising and swelling, but no tears or anything, and they didn't give her an episiotomy. It probably looked worse than it was. Anyway, glad you are OK now!
Last edited by ledgemoor on Tue Mar 04, 2014 6:31 pm, edited 1 time in total.
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Re: Hysterectomy questions

Postby seeking perspective » Tue Mar 04, 2014 4:06 pm

The way the DaVinci "wrist" rotates makes it very effective at being able to look for cancer and endometrial implants from angles a traditional lap just can't. (You can see a cute little video about it here.)

ledgemoor wrote:Seeking perspective, the vulvar damage wasn't the fault of the DaVinci, but from removing her uterus thru her vagina. It looked horrible, LOTS of bruising and swelling, but no tears or anything, and they didn't give her an episiotomy. It probably looked worse than it was. Anyway, glad you are OK now!


That was the route my uterus took on its way out. I had internal bruising and LOTS of swelling. I'm glad it wasn't permanent damage you were referring to.
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Re: Hysterectomy questions

Postby ledgemoor » Thu Mar 06, 2014 10:39 pm

Thanks for that video! Very well done. It's the first time I have been able to look at it as merely a tool -- and smile -- and not something macabre. It is an amazing device.

Notice they concentrated on the cute little gripper and didn't give you too long a look at the whole machine, though. But I guess x-ray machines and even the phoropter was scary when they first came out.

I watched a video of a DaVinci hysterectomy, seeing the same thing the doctor saw, before dw had hers. That probably wasn't wise :-)
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