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Does sex hurt? Is there anyone out there with FAP?


I have FAP. And by the time they caught my FAP, I was already in stage IV colorectal cancer. I have lost my rectum, anus, my entire colon. I had to have liver ablations or burnouts, and I had to have a total hysterectomy too. Also, my FAP has advanced. I have precancerous polyps in my stomach and precancerous cells in my duodenum. Can you tell me how you deal with having this disease?
My husband and I have been married over 18 years, I think 19. I can't remember anymore. I have chemo brain, and he too tells me that I'm still sexy and that he loves me, and sex can wait when I want to do it. But it is me that wants it. I was a very sexually driven person, and it really, really hurts to have sex now. I cannot take Premarin, estrogen, or anything hormone-based because of the total hysterectomy. I tried the KY stuff; it didn't help much. My surgery was May 2, and my last hospital stay was September 1, and it's only been about two weeks since we tried having sex for the first time in over a year. I miss feeling sexy. I miss the way he kissed every inch of me. I just feel like a shell of my former self.
Can anyone tell me if sex will get easier? I want to be able to please my hubby as well as be pleased!

Also, is there anyone out there dealing with FAP?

I picked firecracker as my username because everyone has always told me I was one r fireball - just full of life and gusto and really funny and fun to be around. I want that person back too.

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Hi Firecracker ~ my daughter was diagnosed with FAP when she was sixteen. At that time she had thousands of polyps lining her colon. Her colon and rectum were removed, and she was given a J-pouch which twisted and became necrotic within a few weeks. The J-pouch was removed along with 80 cm of small intestine and since then she's had an ileostomy. Over the last 6 years she has had several desmoid tumors removed along with stomach polyps. Currently the doctors are monitoring the size of another desmoid tumor which thankfully has not increased in size for several years.

There are others on this site with FAP, and I hope they see your post.
Hello, Did you have any kind of radation treatments to your middle section? I know when I had radation, it caused vaginal shrinkage. Making it so a man's penis can not penetrate fully. Only about 3 inches is able to fit inside. So if this, happend to you and you are trying to force it in, it will hurt. I know that sometimes this happens after hysterectomy too. Doctors have told me that you can use dialators to increase the size of the vagina again but it won't happen over night. And you have to follow a schedule and it is uncomfortable feeling.
But from reading all you have been through, it probably is you just need to heal fully. There are many aspects to sex. We just need to learn a new way to do things. We might not want to do it differently but that is what life as dealt us. Sexiness is in the mind, so you need to convince yourself you are sexy again and believe it. Cause you are basically still the same person going through a tough time in her life. So be kind to yourself.
Since my ileostomy, sex had become excruciating.  Then, after my rectum was removed, it was even worse. A friend of mine mentionned a women's pelvic and sexual health institute in Philly, about a 2 hour drive for us.  I started there last summer.  They put me on some topical medication and I have been using the dialators every night now for about 6 months.  I am finally on the largest size!  I am hopeful that my sex life will return very soon.  The institute has been wonderful and very caring and gentle and understanding about my history.  I am so happy that I found this place.  I don't know what I was going to do as my regular gyno. had no clue what to do with me.  Hopefully, you may find a similar facility where you live.  Good luck.
it happends to me too - dry hump your back in highschool
I  have FAP and my niece  (late 40's now)  --  is headed for stage 2 -- colon gone and has been reattached but now all that has to go as the polps are everywhere as they will be given time --

I was much older (67) when diagnosed - totally unheard of situation and I had both a Whipple and total colostomy in one operation -- I was loaded and had no signs -- but underwent the surgeries in order to take care of the grandhildren and the farm -
Sorry I'm replying to this so late, but I figured I would just in case you hadn't found an answer.  I was told by my doc that the reason sex is painful now, is because the cushion has been removed.

In the past, your intestines curled and curled  and cushioned your uterus and tunnel area against bonier parts of the body that were behind it. Now, all of that cushion is gone (shrugs)   I would suggest a long conversation with your GI, or OB/GYN to see if there is anything they can do, or maybe insert
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