If you had painful sex problems would you mind reading this and sharing if you experienced anything similar and if so what action was taken? My fear is that maybe the sex pain is an indication of a more worrying problem eg bowel adhesions or even recurrence. Thanks.
On Friday my boyfriend and I had penetrative sex for the first time since probably at least a month before my total hysterectomy 4 months ago for Clear Cell OC Stage 2B
We took it slowly and carefully and just at the point it all seemed to be going well I felt a sensation I find hard to describe, maybe a kind of popping 'round' pain and this kicked off an agony I have never before experienced in my life.
Stabbing pains in my vagina (as opposed to skin/tissue soreness), stabbing pains up my bum and burning/cramping literally all over my pelvis. Luckily I'm end of terrace and my next door neighbours were away because I was screaming my head off for about half an hour until pain meds finally kicked in. I am still feeling very traumatised and upset. No bleeding or strange discharge.
It is not from lack of lubrication. I think perhaps some scar tissue was disturbed? BUT I have had constant pain since (so that is 3 days of pain) which is both period type cramping, gripey bowel pain (definitely bowel pain, although bowel movements are normal) as well as unsurprising pelvic muscular soreness worsened by changing position. Also back pain but that's because my core muscles have clearly been over worked, not least from tensing from the other pain.
I was seen by the emergency gynae clinic yesterday who couldn't see any signs of prolapse or vaginal cuff tear. Kindly they are giving me a transvaginal scan soon just to be doubly sure. Bloods OK, urine test OK. However, given my situation which is that my ovary/tumour was adhered to the bowel and there is a risk there were cancer cells hiding on the bowel, I wonder if I should insist on seeing a bowel clinic.. or get a CT scan? Surely a gynae nurse is only going to look at the gynae bits,. of which little remain 😩.
I am mid-way through chemo though have had to delay session 4 due to another unrelated issue which I won't get into. I should state here that my subtype is often chemo resistant, so it is not beyond the realms of possibility that there is a tumour growing on my bowel as I write (though I am optimistic that this is not the case!) Or maybe my bowel has attached to the vaginal cuff????
I did experience painful sex a few years back but only during penetration not afterwards and nothing like what I went through on Friday. Looking back I think it may have been the undiagnosed endo, which was untreated and caused my OC. But then again I hadn't had sex for years at that point so 🤷.
I know I can call my McM team nurse and I will do but I'm curious to know whether this is actually quite normal for the body to react like this and to this extreme.
Thank you X
Written by
Emcee71
To view profiles and participate in discussions please or .
hi Emcee, so sorry about this. I know how distressing it can be to go from a normally functioning sexual woman to hurtendous pain in the aftermaths of the OC surgery. Pain in the aftermath of hysterectomy is I think very normal, but may be not lasting 3 days. It could last days I suppose. I think there might be scar tissue at the top of the vagina (the vaginally cuff) and a gynecologist can put silver nitrate to break down that scar tissue. Hopefully that’ll reduce the pain. Remember that the effect of surgical menopause is no vaginal lubrication and vaginal canal atrophy which maybe another reason for the painful sex. I think vaginal estrogen cream might help with preventing vaginal atrophy and having a functional vagina. Estrogen cream is a life savor. If you had a CT scan recently, and it was fine, likely this pain is not from recurrence. I think it’s more likely the sexual difficulties that result from the OC surgery and the lack of hormones in the body. If you feel like it and want to talk about sexual/HRT topics in a more private manner, please feel free to message me. Best of luck!🍀
I haven't had a CT scan since October last year. This is the shitter with CCOC. You are given chemo, but even though chemo is less likely to work, you're basically being treated as if chemo will work and thus no CT scan until the end of chemo. Given I waited 9 weeks for chemo post surgery, it will be 6 months post surgery until I get a scan. This is why I am so anxious about everything I guess. They say 'we are provisionally staging you as 2B although the tumour is pathalogically a 1A' and 'we cannot be sure we got all the cancer out' etc. FFS. I hate this whole thing.
I can totally relate I was also 1a ccoc but I was told they would not be able to stage me until they did a full hysterectomy because it was the only way they could know for sure if it had spread. I opted out of chemo and I get scans every six months I am surprised they don’t scan til chemo is done. I am having all sorts of body changes now but I was so scared to say no to the hysterectomy because if it was more than 1a I would definitely have needed the chemotherapy. Good luck with everything your not alone I felt exactly the same way you are.
Hello, it sounds very similar to a muscle spasm I had before my op. Started in my pelvic floor muscles & travelled up my torso. It was very painful & went on for what felt like hours. It took me days to recover. I hope it’s nothing more serious, very best wishes x
I haven't had this myself, but I am wondering whether your cervix was removed as part of the hysterectomy, in which case it might not have been 100% healed? Or whether your pelvic floor muscles went into spasm?
Discuss it more with your team and ask for a check on healing (or is this what they did?). And a scan if it would ease your mind.
If not you could consider a little gradual self exploration with a set of dilators before venturing back into penatrative couple sex? Or even talk to a psychosexual therapist via the NHS or privately (College of Sexual & Relationship Therapists COSRT).
Thanks Morini Agree all of the above just seems odd my bowels are also affected (as in, waves of pain) . Have talked to McM nurse who is speaking to consultant x
I am sure it won't be, but have they checked for vaginal cuff dehiscence? It is a rare complication after a hysterectomy. Can be after sex and acute pelvic pain is a common symptom.
I experienced very painful sex after my surgery and it made me cautious for months after. I found that the use of vaginal oestrogen and vaginal dilation helped. I was mortified by the use of the phrase ‘vaginal atrophy’ as I felt it implied it would never work again. I hope that you find something that works for you and that it isn’t a sign of anything untoward.
Thanks, FJ I'm so sorry to hear you had this too. Can I ask how long it lasted after sex? My concern is I am still getting period like pains 4 days later. Hopefully it's just shock waves but to have my bowels in pain too seems excessive x
My pain lasted a couple of days and travelled down my leg and around my buttocks. I put some of it down to a bowel reaction as my tumour was gigantic and adhered to my bowel in several places. I had spasms, probably due to being worried about pain, the next few attempts. All is fine now. Oddly my orgasms intensified after I’d recovered from my operation - I have no idea why.
In America I believe they do scrapes of organs all around the pelvis to be sure no cancer is hiding So I think they would have scraped my bowel where the ovary was stuck and put said cells under the microscope ..... So surely I'd have a more definite staging and less anxiety... Anyway no point dwelling, it is what is is I guess x
Hello EMCEE71, I too have clear cell epithelial ovarian cancer. After TAH, I had six rounds of carbo/Taxol chemotherapy. It kept my cancer at bay for 6 years! I hope you have the same success that I did. Best of luck.
Just a quick update. My pain pretty much disappeared yesterday (a week after the unfortunate episode). Hurrah! I have a follow up TV scan booked with gynae (and more bloods) in case they missed anything doing the speculum exam. However the McM Nurse wasn't sure I should have one, I think from a postsurgery point of view. That seems odd - if it was deemed safe to put a penis up there, and then a standard sized speculum, surely it's safe to put that wand thing up? (sorry to be blunt!)
She has been very thorough and spoken to both the Onco and Surgeon, both of whom say there is no reason they can think of why this pain would have happened. I find this odd as surely if there is the possibility of scar tissue, that is the surgeon's department. However he has offered to either see me or call me which is good. I have also said to the Nurse that given the pain is pelvic or spread to the pelvis, would it not make sense to have a pelvic US. We shall see. Fingers crossed we can find out the issue so if there is a solution (silver nitrate/scar tissue removal) it can be dealt with whenever it's appropriate to do so.
In other news despite efforts to re-book chemo after having to cancel due to going to hospital for other reasons, I will have had 5 weeks elapse between chemo sessions due to difficulty in rebooking as Easter threw the chemo schedules out. Trying not to worry on that front.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Please help intense pain 
Breast pain on Carbo/Caelyx
1st Chemo update - pain 
Rectal pain/ stinging.
Back pain 
