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Pain during sex after Ileostomy surgery?

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Posted 5/28/2017 3:40 AM (GMT 0)
Has anyone experienced pain during sex after Ileostomy surgery to the extent that I couldn't stand it? Also, my bf felt a balloon like object inside of me.
Posted 5/28/2017 4:39 PM (GMT 0)
Yes. Did you have your rectum removed or is your rectum still intact?

I had my rectum removed and sewn shut. Sex is a work in progress for us. It has gotten better with time but it still doesnt feel like it did before surgery for me.

I remember my surgeon saying the end of the colon and rectum support the vagina and sex may be different after surgery. I think I remember him saying the vagina may shift without the support of the rectum making things feel tighter or shorter. My husband hasn't said he feels anything but he does feel like now he can't go in all the way. Perhaps because things are shorter? Maybe this is what your bf feels is some part of your anatomy?

One thing that helped us is putting a firm pillow under my butt to tilt things up a bit and that took some discomfort away.

I have an appointment with my gynecologist in a few weeks and plan on asking her for suggestions. She has other ileostomy patients so I'm hoping she can help more.
Posted 5/30/2017 6:18 PM (GMT 0)
Thanks for the advice. I'll try that pillow thing. It makes sense bout there being some part of me that my bf felt after the surgery. I wish he liked getting off on bj's. That would solve it all. Those are so easy to do. BTW, no, they did not remove my rectum. My Ileostomy was possibly temporary but since has been decided on it remaining permanent. From all I've heard, I'm thinking it's better to keep my Ileostomy permanently. Thanks again, Cupcakes.
Posted 6/6/2017 3:10 PM (GMT 0)
I have thought about posting on this topic myself. I have had my ileostomy for a little over 4 years, and have had my backside sewn up for a little over 2 years. All in all, sex has still been pretty good since the surgeries, but things are definitely different and sometimes painful. There are certain positions that cause a good bit of pain, even leaving me achey and crampy for a day or so afterward.

My doctor had also mentioned that things would move around after surgery, and I knew for sure that is the case for me. Putting a tampon in is much different (and pretty difficult to get in all the way) and when I got my IUD put in that was some SERIOUS pain that I was not expecting (and I have a very high tolerance). When that was put in my OBGYN did mention that my uterus was pretty far back, with more of a turn than is average. I am considering getting the IUD taken out, but also worry it will be painful all over again.

I am very interested to hear what Cupcakes doctor has to say, as none of my doctors have a history with other patients with ostomies. I'm sure there are lots of things out of place inside of my body now...I do have minor bladder issues related to my surgeries and just now, over 4 years later, have I started to get a "normal" period again...something I wish would have not come back at all!!
Posted 6/7/2017 11:08 AM (GMT 0)
I will post after I see her. I'm hopeful she has some insight or help. She was quite knowledgeable about my ostomy and asked about sex and last years exam but we hadn't tried yet because I was still healing.

She was the one that actually diagnosed my fistula before either my GI or surgeon so I really trust her opinion on my care.
Posted 6/22/2017 9:59 PM (GMT 0)
An update, I have seen my doctor. She didn't provide as much insight as I hoped.

She did mention the position of the uterus can change after surgery and cause issues. Possibly a cause of pain or some guys might feel. My uterus was still in normal position but my vaginal opening and where my RV fistula was repaired are tighter than normal. So my doctor thinks that is my issue. Her main suggestions were positions and lubricants to provide a little extra comfort or help.

Her other suggestion was to see a sexologist. She has one local Dr she recommends for her patients and she said it has helped many of her patients with similar issues and most of her patients say it wasznt what they expected and was helpful.

I don't think we have that much of an issue or at least not yet anyways.

Sorry I don't have any earth shattering tips to share.
Posted 6/22/2017 10:36 PM (GMT 0)
Thanks for coming back to give the update and info! I will be making my yearly girl doctor appt. soon, and will definitely ask what she thinks too. I have no doubt my parts have moved around a bit, which is probably a lot of the issue.

Another "girl" problem I've had since surgery...well kind of. While I was sick I stopped getting my period because I was just skin and bones. A month or so after surgery, I talked to my doc about birth control options, because I had heard the effectiveness of the pill in ostomy patients is not fully known. At that point I hadn't had a period in 4-5 months, so she gave me some pills to try and jumpstart it, but that didn't work. So, we just went ahead with the IUD, and I had a few blissful years with NO periods!! smile Then....out of nowhere, over 4 years later....they came back, and big time. Now I get PMS like never before (not awful, but worse then I'd had in the past) some cramping, heavier bleeding, more regularity, etc... This is especially odd because I still have the IUD, which should keep the periods in check to a point. Oh, and since my parts have moved...putting in a tampon is a little tricky...and sometimes they don't work so well. But yeah, now I am wondering if I should try different birth control and I really wish the periods would have just stayed away! Anyone else have similar experiences?
Posted 6/23/2017 1:53 AM (GMT 0)
I also have the tampon issue. If I don't put it in just right it is uncomfortable and sometimes seems to put pressure on my bladder. I never had this issue before surgery. My gyno did ask if I was having any bladder issues because that can be more common after this surgery. I am not besides with the tampon.

I was on the birth control pill with my first ostomy and 10 months with my permanent ostomy. I never had an issue. No spotting or signs the pill may not be effective, also never got pregnant. I don't have watery output or high volume, most pills seem to dissolve fine for me. My doctor did suggest the chewable birth control pill if I was worried. I never tried it though. I had to stop the pill because of my PSC but I miss it, worked great for me.

They suggested an IUD but I am terrified. Not having given birth plus the ostomy surgery I'm worried it will be a miserable experience. Also my periods since stopping the pill have been really light so I'm worried the IUD might increase bleeding.
Posted 6/23/2017 4:29 PM (GMT 0)
I love having someone to talk about this stuff with who really knows what it's like!

I have had some bladder problems since surgery, and was even sent to a urogynecologist (who knew there was such a thing?!) ....and it ends up I have some nerve damage and probably muscle weakness. Basically, I don't usually feel like I have to pee until my bladder is very full, and I sometimes have trouble holding it in, especially during exercise.

Nobody warned me about the IUD and it was SO much more painful than I expected. It's getting close to time to take it out...and I'm quite nervous and unsure about getting another. I'll have to look into the pill option again....though I do need the ones that don't have estrogen.
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