Seeking advice - Post-surgery painful intercourse - any similar experiences?

Deborah, I am new to the site. Do you still love your husband? Have you tried osto-lingerie?

Ermmmm it's been 15 years. Trust me, I am not trying anything.

Before my Ileostomy, we were extremely active!! Since then, nothing - I am not sure I know what love is anymore!! I care but love, mmmmm not sure.

I am here because I see no way out if I were honest and I don't want to hurt anyone. So..... As I see it, it's better and less selfish to be sexless in shields than to hurt people!!

So no, Ostomy lingerie not happening.

I do enjoy sex and still can. My problem is that no one wants me. And my husband is not a sexual person, so I don't get any at home either.

I realize that it may be difficult, but there are more ways to skin a cat; not that I want to skin a cat...
Most men like oral sex, and maybe you can entice a male that way and eventually might lead to intercourse.

An open mind helps. I firmly believe that friends can be lovers too, as long as both parties understand the ground rules and are open and honest about their feelings.

The problem typically comes when jealousy raises its head.
Just my two cents' worth. But the prime directive should be to feel good about yourself.

Ed

I read some of these replies and must say, in my opinion, they are not the norm. It is totally reasonable to return to a very active sex life in the case of vaginal sparing radical cystectomy. Prior to my surgery, my sexual activity and age were big factors in how my surgeon would proceed, thank God! So not all is horrid, see yourself as desirable and go for it. And I'm old too! LOL. Have fun! ;)

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Sex... What is that!? I have a permanent ileostomy and also had rectal failure, so for me, I tried very hard to do it and went to doctors with the same issue. What really upset me was the attitude that just forget about sex (especially when I am in my early thirties and still very much at my prime). There are other ways that we are intimate now, and weird how much closer we've become and he understands and is certainly satisfied in so many ways, it has always been me that takes issue with this! Guess it's good that he is much older than me and I think it also sort of took time for me to be less inhibited. Once in awhile I put on a corset and even use lace to tie up my bag and then I feel a bit better, even if it is torn off within 10 minutes and over, but it is the psychology of finding a graceful and self-dignity in my image. And so I hope you find some solution to this but you are definitely not alone in this big (pink elephant in the room that most everyone thinks) and I wish you the best of luck with doctors or whatever helps you!!!

I'm single and don't see anything happening from now on. Sigh, who would want me now?

Becrhomat, you are a woman who had more going on than just sex, and the only thing that has changed is the plumbing. Change your mindset. It's their loss!!! Angelicamarie

Did you not have other qualities? You still have those qualities!!!

Re: Painful Intercourse

Good morning, DH. I read your post. I had my surgery in 2015. It's funny that you feel that way. I did too, so the last time I had intercourse was after the surgery, in which my husband said he couldn't enter. In all honesty, he has lately been saying things. I'm sure he wants to now. I think that the body goes through a traumatic experience before each part left wakes up. Now, I do want sex, but I won't allow it because my husband made the comment that it's too much preparation. But truly, I need to get on the good foot myself and try that Premarin. What we feel truly transfers to others, so on a bad day, what you feel transfers to others. Before the surgery, you did not just have a vagina; you had other qualities that made you beautiful. That part of you still exists. Surely, he didn't marry you for sex! Love is a great factor!

Bechromat:

Hello, did you not have a life prior to the surgery? Didn't you have a guy friend? Did you not have beauty? We all possess beauty in different ways. You had goals, you had a job, you had good qualities. So you, as a human being, were not based on just sex. You are more than that. That person is still there! It should be "Why wouldn't they want me?" (mindset). Angelicamarie

Hi DH,

I'm so sorry you are having sexual issues after your surgery. I didn't know until I read through all the posts, if you'd had radiation or chemo. I have had my ileostomy for over 50 years, since I was a "kid" of 15, so I had no pre-surgical sexual experience. But I do know that radiation and some medications can cause damage to the tissue. Discuss those issues with your doctor.....or with a gynecologist (male or female) whoever you feel more comfortable with.

My final surgery (removal of the rectum and anus) had some complications.... and some long-lasting effects. Between the ages of 15-19 (when I had the final surgery) I had still not had intercourse, although I'd been somewhat intimate with a former boyfriend. I didn't think I had any problems and was able to have an orgasm.....without intercourse. But during the final surgery, there was damage to my bladder, and 10 weeks post-op, I still couldn't pee, nor did I have any sensation of having to pee. Eventually......I was able to urinate......but rather than just relaxing and letting the urine flow, I really had to "push it out". The sensation of having to pee never returned. At first, I thought I had sexual issues as well..... I was newly engaged, and intercourse was "less than fulfilling". I went to see a therapist, who gave me some good advice.... He said I needed time for my body to heal completely, and if it was still a problem 6 months to a year later, go to see a gynecologist. In the meantime, during our engagement year, we practiced with different positions and different angles to determine what was most effective and least painful. It's been 50 years now....and there are still times that pressure from the wrong angle can cause pain. But I did heal and managed to have a fulfilling sexual life......had two pregnancies and gave birth to two battered but basically healthy babies.... Unfortunately, both went on to develop inflammatory bowel disease.....one has Crohn's, and the other has ulcerative colitis, but we're all grateful that their conditions are managed by medications. They are both in their 40s and are raising young children.....so our concerns aren't over... Sometimes.....life isn't easy, but with patience and the ability to adapt and be grateful with where you are in life.....we can manage to overcome some of the issues.... Marsha

I have had a rectomy.   I still have a perirectal fistula.   I still enjoy it, although I only have a piece of plastic to share it with, currently.   Jennie