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

Hi, this question is kind of personal and embarrassing. But I am going to throw it out there anyway. Back in June, I had to have an abdominal perineal resection, which is the removal of the rectum and anus along with a permanent colostomy. The problem is that ever since the surgery, I have experienced painful intercourse to the point that I dread it. I have tried lubes, but it doesn't work. It seems like there is a connection between the surgery and the problem. It feels like when they sewed up my back end during surgery, half my other opening got sewn up as well. I know that is not the case. Have any of you other women experienced the same thing?

Hmmm, I'm not sure, but I had a somewhat similar thing. (Adhesions from rectal stump surrounding cervix, unable to fix.) Adhesions from surgery could have tightened the backside of the vaginal wall. I'd suggest seeing a gut/woman specialist (if they exist).

I had my rectum removed in Sept 2010 due to fistulas from Crohn's disease. They also wanted to remove my vagina due to the damage on the back wall. I cried for weeks. Then I went to a surgeon who said he could leave my front wall but the back one was too severely damaged. So basically, I have no vaginal tissue on the bottom side. Vaginal tissue is very stretchy, other skin is not. The doc said that every time I have sex, I will tear and form scar tissue until eventually, I will be the size I need to be for intercourse. Painful, yes!! But the thought of never having sex again was way more painful. Message me if you'd like to talk.

I removed my colon and rectum and have a pouch instead that's connected to my small intestine. I think there's a difference in sexual experience. First of all, I don't feel I get very wet. Sometimes I even still get some blood out like a virgin. Do the men that have sex with you come and still enjoy, however?

I had the same surgery in April 2011, before the surgery I had radiation and chemo. I have also been experiencing pain during intercourse. The nurse said I would shrink from the radiation, but I did not have pain. I also think that my uterus tilted back. I am thinking of checking with the doctor, but feel a little embarrassed about this topic with my doctor (he is new to me).

Words of Encouragement from Ostomy Advocates I Hollister

My gyn-oncologist prescribed a vaginal estrogen cream called "Premarin" that I used during and after radiation treatment to thicken the vaginal walls and make them moist and supple again. I used to have issues with pain, bleeding, and dryness to the point that intercourse was unthinkable, not to mention the follow-up physical exams... I would leave my oncologist's office in tears and 'she' would be sore for days! After a few months of using 1mg of Premarin cream 2-3 times a week, I am happy to say that I enjoy sex as often as I like without any dryness or bleeding, and the exams are just fine now...

Hope this helps!
Fable

Thank you, Fable. I will ask my gynecologist about the Premarin cream. And I thought the radiation may have played a part in the problem. My radiation oncologist didn't tell me that the radiation could affect the walls of the vagina, but I read online that one of the side effects of pelvic/rectal radiation could cause the walls of the vagina to narrow. I experienced discomfort then, but it got worse after my surgery. I will ask my OBGYN about the Premarin cream. Thank you all for your replies. And Nancy, to answer your question, I think my husband would enjoy it more if he wasn't worried about causing me pain. But he is patient and expects the problem to eventually go away. Happy holidays, everyone. Donna

I had the exact same problem as you... What happened to me is my uterus tilted after the rectum was removed... Because of this, I was unable to have any more children in vitro or natural. As well as, it has made it too painful to have intercourse and that was hard to accept but we learn to enjoy other things.

Does anyone with this surgery still enjoy sex? Please, some hope?

Donna - You're very welcome! I know this isn't an easy subject to post on any forum. Thank you for being brave enough to throw it out there.

Donna, I found that they take the left side of my vagina out along with the other stuff. It's a bit painful at first, just gotta do more of it. Good luck to you, babe.

What you have all described sounds like no fun. Although the surgery may be a related cause, you should consider physical therapy but for the pelvic area. It may sound weird, but there are so many muscles in the pelvic bowl and like any place on your body, when one part fails us, other areas compensate. So some muscles tighten and don't work as they did before. There are physical therapists that specialize in this and it can be invasive, but they help your body re-learn what it is supposed to do. They help stretch muscles that are tight, help you strengthen weak muscles, and gain control over muscles you never knew you controlled. In my mind, it's better than messy creams that may or may not help.

Best wishes

I had the same problem, sort of... After I had surgery, I couldn't use tampons anymore because it would really hurt (I could get it in, but then I could feel it there and it would get more and more uncomfortable until I had to take it out, after only 30 minutes or so). I went to a gynecologist and she sent me for a pelvic ultrasound. She thinks it is just some scar tissue and she suggested I use these stretcher things... It sounds kind of weird and I haven't ordered them, but basically it is a set of wax... ummm... bars? lol. You put one in and just leave it in for about 20 minutes each day. Each week you try the next size up so it's slowly stretching it out over time. The wax kinda forms to your shape from the body heat... I might try it out. She also said that just having more sex would probably help, but I am not dating anyone right now. So yeah, I would go see a gynecologist if I were you. Good luck.

I sure hate to hear all this -- I just had this same surgery on Nov 14. So I am still in the healing process and have not tried sex yet. I hope I do not have this same problem. I did talk to my gynecologist before having surgery and he seemed to think everything would be fine afterwards. I did not have to have chemo or radiation so I'm hoping everything will still operate the same. Please let me know if you find any solutions because I would definitely be interested.

I had the same surgery in 1997. I also had chemo and radiation. After 3 months of radiation, the radiologist tells me that he forgot to tell me that the radiation would scar my vagina and make it very small. He gave me 3 dilators in small, medium, and large. I was told to use them 3 times a week for 5 or 10 minutes at a time beginning with the small. I also talked to my gynecologist and she prescribed Premarin as someone else suggested. It helps restore the tissue to a softer and more normal feeling. So after dilating and using the Premarin and using lube, I am able to have a better if not perfect sex life. Hope you find some relief.

I enjoy sexual satisfaction in other ways. I don't want to do anything that is painful, forming scar tissue, or tearing up my delicate insides, even if an MD says it will eventually help me to have intercourse. I've had more than enough pain and suffering throughout the course of my life!! After this surgery, I am focused on my pleasure and doing things that bring me joy and pleasure....never pain!! I love the other ways of being pleasured by a lover and fortunately I have one that is very much into pleasuring me in other ways. I have no need for intercourse and don't feel I'm missing a thing! LOL.

Baguette,

I agree. Sexual relations (with others or alone) should be for pleasure, not painful... never pain (for me). It is one of our joys in life.

I remember a punchline from a joke - "If it hurts, don't do it." I don't remember the joke, but the punchline is a no-brainer for me. I am not up for more pain - 'no way - no how'. I never understood "no pain - no gain"... I will forgo the gain if I have to have the pain.

Thanks for saying it and saying it so clearly.

Hi macsac1, I was wondering if you had radiation for your rectal cancer. The radiation caused me to have what they called a neurogenic bladder and it is difficult to start peeing and I can't empty my bladder all the way. I learned to use my abdominal muscles and cough and do whatever I can to empty my bladder because I did not like using a catheter. I too had that lump feeling after surgery. I asked my doctor if I was always going to feel like I had a giant wedgie. LOL It does go away eventually although I can't remember exactly how long it took. I don't know about the sex not feeling the same but I did hear from one man with this surgery that it caused retrograde ejaculation, where most of the sperm go into the bladder and you don't feel the same release. It might be something to look into. Take care!

Hi luv2laf, I have also had problems urinating ever since radiation for rectal cancer. It feels like I have to squeeze a little harder to get it out. I noticed that if I squat over the toilet to urinate rather than sit on the toilet, the urine comes out much easier. Donna

Hi Donna, sounds like we have been through a lot of the same things. Thanks for the tip on squatting, that is one thing I haven't tried yet. I looked at your profile and you have some beautiful pictures. Hope you and your husband are still able to travel a lot! Jane

I'm with you there, Dawneagle. I've had enough involuntary pain, bodily trauma, and stress....I'm definitely not signing up for more of my own free will! Sex is supposed to be pleasurable. It's supposed to feel good! When sex is pleasurable, it releases a plethora of hormones that make us feel blissful all over. There should be no trauma and tearing of tissues and pain involved during sex (YIKES!), unless pain is one's pleasure. Some people truly enjoy pain with their sex, but that's a whole other story. LOL.

As for the doctor that would tell a woman to continue to have PAINFUL sex in order to tear herself up inside and form scar tissue, so that she could be the right size for intercourse, I'm absolutely appalled at that kind of "medical advice"!! Scar tissue is NEVER a good thing. Scar tissue is formed by trauma to the body and it in itself can cause painful intercourse, often requiring surgery to remove. A no-win situation. (Google.... vaginal scar tissue).

Hmmm, I bet if that doc felt like his penis was on fire every time he had intercourse and every time he had intercourse it was ripping and tearing up his penile skin, he would be singing a different tune.

Why would a man even want to have intercourse with a woman he supposedly cares about and loves if it's ripping her vaginal tissues and causing her PAIN? Please, learn other ways to pleasure your woman and receive pleasure!

Doctors should be telling women who find intercourse painful for medical reasons to practice the many other forms of sexual intimacy and pleasure, rather than do anything that causes trauma to the body and tearing of the vaginal canal and tissue. Physical trauma (especially to a woman's sexual center) is trauma to mind, body, and spirit. Scar tissue is bad. Always. It will cause more problems than it will "fix." What is wrong with these doctors??

Learn about Tantric Sex. Sisters, please don't harm your body further just for the sake of having intercourse. Intercourse is not the be-all and end-all of sex. Sex is meant to be highly pleasurable. Orgasmically pleasurable. If what you're doing RIPS, TEARS, and/or HURTS, don't do it!!

After all you've been through, be especially kind to yourself and gentle to your body. Respect and honor what your body is telling you. Pamper yourself and get as much pleasure out of life as you can get while you still can. Life is too short to do otherwise.

I haven't read any other replies, so if I'm redundant, please forgive.
You're feeling like they opened the front as well as the back - check with your surgeon but mine explained the "pelvic levator" muscle or "pelvic sling."
He was able to leave my openings all in place to avoid just your situation HOWEVER -
I can't have sex because I have less than 4" vagina.
Therefore I am no help in the intercourse arena.

Please laugh with me:
I am looking to pursue an RN and will need to write a thesis.
A topic came to mind recently regarding the experience of organ/structure removal as pertaining not to just physiologic factual changes, but the perceptive experience of the patient.
My experience with recovery from my colostomy takedown (I still have the urostomy) prompted this, as I have the outer remnant of urethra left in place. As my anus learns to tell me when things need to empty (which are different from the previous "normal" signals) I've noticed that I feel like I "need to pee" even though there's no bladder doing the signaling.
I'm going to check with my urologist but I've been thinking the relaxation reflex used to poop uses the same muscle as the one to pee, hence the phantom feeling.

Please don't be insulted, but your comment is EXACTLY the type that I wondered I might find if/when I pursued the thesis. (No, I will NOT contact you; this is in the far far future; it's just a cool coincidence I think)

I completely understand your situation. Although my wife's surgery was caused by a different illness (cancer), the result was the same. You are not alone - hang in there, there is hope. Things will improve over time.

I never had any idea about the vagina shrinking during radiation.. but that does make a lot of sense and answers why I see the blood during relations. Wow....

Is the problem that you feel too tight, like his penis doesn't fit in you? Or is this some other kind of pain? I had a problem feeling kind of like a virgin again. I confided in a girlfriend and she suggested using a dildo to gently stretch things on my own. I did this and it worked.

I had the same issue with perineal...etc. Only during radiation and chemo, my vagina completely fused shut and doctors said the remaining tissue was too friable. When the cancer came back some months later and I was going in to have my anus, rectum, and part of my poop chute removed, I asked what they could do for me and received vaginal reconstruction surgery along with everything else. Almost 2 years later, I still haven't met anyone I want to have sex with (or probably vice versa). Sometimes I wonder how different am I from some dude who has undergone sex/gender changes? My veejay jay seems to be in a slightly different position from before, and I still don't know exactly what was done during surgery, but I have the notes and someday I will figure it out. I am very thankful that none of my sexual nerves were affected in any bad way. Topical sensations remain pleasantly intact. I wonder if by being outgoingly frank about my situation upfront with everyone, am I limiting my prospective future partners? DW

Hi all,
I have had my rectum removed and had chemo and radiation treatments due to cancer. This was done in October. I am still not comfortable with missionary style sex, but we have found oral sex and other ways to solve the problem. I have always enjoyed sex and would not like the thought of not being able to enjoy it again. I was also told that the skin in the vagina would stretch over time with use. We are still working on this. Don't give up, it does get better. Be patient.
Judy

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I have a urostomy. 5 years this month! My sex life is over!! Too much vaginal damage. Get lots of vaginal infections too!! Nightmare! The

Sorry but sexless in Shields here!! 15 years since I have had sex. My husband doesn't come near me!!