Feel asexual 10 years after hyst and BSO

It's difficult to describe how validating it is to come here and read the stories and experiences of other women like me, women that have walked a mile in my shoes and can understand what this changed life is like.

My hysterectomy in 1999 was for adenomyosis and severe endometriosis. Two years later in 2001 I again had surgery, this time bilateral ovary removal.

I've also had my sigmoid colon resected which seems to have resulted in some nerve damage.

To add insult to injury in January of this year I had surgery to repair a grade 4 rectocele, it was a posterior repair. The rectocele has recurred and the scar that was left from the repair has narrowed my vaginal canal immensely...don't think ANYTHING can fit in there now even if I did have a libido and wanted to have intercourse....it would never work. The scar continues to be very, very sensitive and painful as well.

My body does not feel like my body anymore. I have no desire for intimacy and when it has been attempted it is painful and orgasms are non-existent....a complete and total difference from the libido I enjoyed and orgasms I regularly achieved with my best friend, my husband of 30 years.

I often tell people I've been gutted, that's what it seems like to me. When the gutting was taking place it seems they took out a bit too much or switched the libido on switch to libido off by mistake. It's gone...zip...zero.

I'm blessed with the most wonderful husband a woman in my situation could hope for. He's patient and understanding but even so, he misses what we had and finds himself frustrated at times...who can blame him? I'm frustrated too!

I hear ya ladies when you mention the facial hair...that's another curse that apparently comes along with the hysterectomy body...not something I was told to expect.

I've tried testosterone and about the only thing it did for me was cause weight gain.

I've gained 30 pounds and don't know who I am anymore.

Would I have had the surgery if I'd known then what I know now???? Not in a million years....no way...no how. I want that part of me back and so does my husband but, well, she's not coming back.

It's an empty, sad feeling to live like this....to feel that you're incomplete.

Thanks for listening to my rant.

Debbie

Hi Debbie,

I feel your pain and am so glad also to hear that we are not alone.

I have not had the amount of surgeries you have had, I feel so bad for you undergoing that many surgeries, you have a right to feel a little (no, a lot) resentful.

My husband and I had a conversation the other night and fortunately he too is very understanding. I told him if he'd like he could get on this page and read how many other women feel the same way I do. I miss my former libido and can't believe sometimes that for the rest of my life I will never feel that "drive" again. I did the compounded testosterone, and other than spending a lot of money, found no effects, as a matter of fact it had an odor to it that I could hardly stand.

I would have to say that not having periods is about the only advantage to having the surgery, I would even put up with the endo pain if it meant feeling desire again.

I know I don't have any other advice for you but please know that I am your sister in this dilemma as well and will pray that someday someone will consider what we are going through and come up with a product to help us.

Take Care.

thanks for your reply. As awful as it is...I find comfort in knowing I'm not alone in this even though I would NEVER wish this life on a single other woman.

Doctors really just don't get it. Before my hysterectomy I had a very frank discussion with my surgeon over my concerns of lost sensation, libido and, perhaps, loss of orgasms. His response was kind of flippant but in essence what he said was he'd never had any hysterectomy patient complain of any of those issues...it wasn't a concern. I believed him....I trusted him. What I'm guessing is that either I was his first hysterectomy patient (which I know I wasn't) or none of his past patients who had had problems had ever let him know. I refuse to believe he lied to me.

The ignorance is frightening when anyone can come to a site such as this and read the countless stories of women just like me who *do* suffer from sexual dysfunction after hysterectomy.

I have to wonder what it will take to get the medical establishment on board with this issue and take it seriously.

Tigger I know exactly what you are saying. I keep trying to get help and I also keep getting frustrated. I heard the same information before surgery..It's not that we don't ask the right questions. My doctor's response was much like your doctors...my sex life would be the same if not better. Unfortunately for me it is not the same or better. All I can do is think, dream, and remember how wonderful my sex life and love making was with my husband prior to the hysterectomy. What is really going on with all these doctors that will not recognize that there is a problem...then they want to say it is depression or in your mind. What a lame excuse. I don't know of any man or woman that wouldn't be a little disturbed at the fact that they have sexual dysfunctions. I don't think that offering depression meds or mental health meds are the answer to helping my private areas work like they were meant to. I haven't heard anyone say that they took these types of meds and it fixed their orgasm problems, loss of sensitivity etc. Sorry for rambling...I hope we can all get help and get back to normal.

I can't address the hormone issues (I still have one ovary hanging around and doing its job), but I can identify with the loss you are talking about.

Long story short -- find a physical therapist who specializes in pelvic floor therapy.


In my therapist's opinion (and I agree with her, given my results), multiple procedures and surgeries create physical stress on the pelvic floor muscles (your use of the word "insult" is indeed apt). This causes them to tighten, even if you don't feel it, and they cannot release fully, which inhibits all the muscle contractions/releases and nerves involved in orgasm.

In the space of 6 months I had a TAH, followed by hematomas and a seroma that ruptured the wound, followed by a wound vac and other treatment, and a colonoscopy. Both the TAH and colonoscopy required bowel cleansing, of course, and the hours of violent force, along with everything else, proved to be too much for my pelvic floor. It responded by contacting, "guarding" the muscles and not allowing the muscles to relax/release properly.

I was discouraged at first, but wow!!!!!!! Perserverance has paid off. I no longer regret the surgery, and believe me, I did regret it during the months when my sexual switch was in a seeming permanent Off position.

I hope this helps someone.

Tigger I feel so sad for you because I know exactly what you have gone through.
In my case I had endometrial cancer and had my ovaries removed even though they were healthy. No-one warned me that I would totally lose my libido a few months after surgery and as it dawned on me I thought my heart would break. The doctors were so dimissive too. As far as they were concerned it didn't matter whether or not I had a sex drive-they had cured the cancer-end of.
I urge you not to give up on it though. I tried testosterone too without estrogen about 18 months after my surgery. I was not allowed ERT due to my cancer at that time.
Although it was not ideal it did bring back all the feeling to my nipples and clitoris and also gave me a bit of drive and energy.I was also able to have orgasms again.

This March I was given the all clear and am now allowed ERT. Well actually I cannot take it as it makes me feel very ill but I do use a little vaginally along with the testosterone and wow-what a difference it has made.I recommend you try it.The estrogen-even a tiny bit externally will switch on the testosterone and you will feel again-I promise you.

The only thing left standing in your way seems to be a narrowed vagina. Have you been given stretchers to insert to help increase the size?
Even if you can't have penetrative sex there is no reason why you should not be sexually active. Penetration is not the only way to have sex. I remember before we were married we used to do everything except penetration and could still both be satisfied if you know what I mean ?
I do so hope you can overcome your difficulties. Sometimes it means being pro-active. If I had left it to my doctors my sex life would probably be over and I would be a very sad and bitter lady. I have researched and experimented very hard because I was not prepared to give up and I urge you to do the same. It is out there if you really want it.
Good luck to you !

uk lady

Dear systers - I am so sad to read all your stories - I honestly thought I was all alone with this horrible situation of being barren and a/sexual. (full TAH was18 years ago)

My memories of the great love live I had with my dear husband are wonderful but it is all I have now. I can not allow him to penetrate or I bleed - the walls and outside of my lady parts bleed at the slightest touch now they are so thin and dry.

I agree there are other 'way's to satisfy - my body longs for what we had before which in some ways makes it even more cruel.

Reading your stories makes me stronger - and makes me want to try to get some control back. I struggle with my doctors but tomorrow I will make an appointment and try once again to get something which might help me.

Good luck to all of you - big hugs...

Algarve ..

It's been very helpful for me to read the responses you've sent since my original post a few months ago. As I mentioned in an earlier message, I am deeply saddened that there are others going through this misery but knowing I am not alone is somehow reassuring for me.

Since my horrible experience with rectocele surgery in January, followed by complications with the urethral sling put in place during the same surgery, I have been unable to bring myself to go and face a doctor. I was supposed to go back for a follow up appointment in March once we discovered the urethral sling had eroded and is exposed, that happened in late January, early Feb., but I have not been able to muster the courage to go and subject myself to more pain and agony.

Besides, I think the doctor that did the surgery is a bozo and that it was his lack of expertise that has left me with horrendous scarring from the rectocele repair whch has significantly narrowed my vagina. Did that make sense?

Speculum exams are purely and simply torture now....the posterior scar from the rectocele repair remains very painful and with the narrowed vagina, just inserting the speculum causes a great deal of pain. Who would want to voluntarily subject themselves to that????? I'm 55 years old and for the first time in my life I'm *afraid* to have a pelvic exam!!

If I had the opportunity to turn back the clock I would not have had the hysterectomy. I'd actually rather live with the pain of endometriosis and adenomyosis and still feel sexually alive than live the way I'm forced to live now.

It's not only me that is affected, my wonderful husband of 30 yrs is just as affected by this as I am. I am not the woman he married. Thank the good Lord I have a man who loves me no matter what...he's every woman's dream, but he deserves so much more than what I have become.

I *really* wish I'd found and read the book "The Ultimate Rape" by Elizabeth Plourde *before* my hysterectomy. It's a book any woman facing hysterectomy or who has already had one ought to read. There is gobs of information there that all of us need to be aware of.

I apologize for this negative sounding dialogue. It is helpful to get it out so I do appreciate you all reading my ramblings. If anyone can understand me it's all of you wonderful women. I'm thankful for you.

I am 2 years post-op, kept my ovaries but I am on HRT compounding therapy with testosterone. I have no sex drive. I went through pelvic floor therapy which really helped to stretch me back out. I used a set of dilators that really worked. You start with the smallest one, (they look like dildos) and work your way up to the largest. *If you want to go that big.
All this being said, I still have no sex drive and when I do, I don't feel that the blood is flowing to the clitoris correctly, like it used to when I was 'normal'.
I too have a very understanding fiance but this is very frustrating.
I hope you/we all find our way back to a better sex life!

Oh ladies, what a relief to share with each other our concerns on lack of sexual desire. I felt (and feel) like the most awful wife in the world. I am now 59, I had a hystorectomy at the age of 36. Since then I have tried patches, pills, ointments, compounded hormones and any advertised potion to help increase sexual desire. Nothing works. I can't stand my husband to touch me. He is wonderful and always says he is satisfied, but I just lay there like a lame duck. I am so thankful that each were virgins when we married (39 yrs. now). He has only known me sexually and I him. (I know that is hard to believe....but possible.) So, thank goodness I am not compared to anyone, or he would not be satisfied with what I offer. The desire is so not there and hasn't been. I had hope for many years that a breakthrough would come with a great miracle for us women (like Viagra for men.) Hasn't happened. I do feel so empty and emotionless. I can reach organism with vibrator, but needless to say that isn't the same as the wonderful experience you share with your husband. I sometimes think it may be that I am just no longer attracted to my husband, we change you know. But hearing your stories I see it isn't just me. Maybe Viagra for women is in the horizon...LOL. We just need to hang in there and love our husbands for their patience.