Hi everyone - for the last couple of weeks I have started to experience chronic pelvic pain when I need to open my bowels. Once I have been the pain eases and doesn't reappear until the next motion. I am on watch and wait at the moment and pretty stressed out over my rising CA125 and of course the first thing that springs to mind is that it is cancer, however my GP disagrees and says it is more likely to be chronic constipation caused by IBS or IBD as my bowel habit has increased considerably (5 times yesterday) I don't have any other symptoms, she has advised that I gradually increase my fibre as my low residue diet is not suitable long term, have any of you experienced this pain?
I had a Total hysterectomy and appendectomy last October.
I have a CTscan and blood check up middle of July, but would like some answers to relieve my anxiety just a tad. Thank you x
Whilst I agree with Julia's comment I would also be inclined to give your CNS a call just in case they could maybe bring the CT scan forward to put your mind at rest earlier. If I suspect anything which I might consider a symptom (lets face it we get a twinge and our mind naturally screams 'it's back') then I always ring the CNS. The hosp are the experts, not your GP, not wanting to disrespect your GP with that comment! If, and it's a big if, it is associated then at least you can get it sorted earlier. Kathy xx Do let us know how you get on x
I could be wrong but I was under the impression that you couldn't have a CTscan less than 6 weeks after your last one, my last scan was on the 28th May, I am due for another scan and bloods on the 9th July, because they found some fluid in my pleura. I did ask my nurse and she advised me to see my GP. Just going round in circles.
Hi Lyn, and you could be right..... I'm really not sure to be honest regarding the length of time between CT scans. I'd go back to nurse if you are not happy though, I've never been referred back to my GP by my CNS.
Spot on Kathy. I'd give your team a ring Lynn. I have pain on one side of my abdomen that comes and goes and doesn't show anything up on scans (but does show a lot else up) and they feel it's a trapped nerve due to adhesions. Always best to get checked out though. Xx
We’re not immune to the ordinary stuff so it could well be something and nothing but I agree with Kathy and see if you can be scanned earlier because I’m sure you’ll worry about it until someone’s had a good look and knows for sure.
I’m probably biased because I’ve had a lot of naff advice from my GP prior to diagnosis and since. My oncologist has been over cautious but that works better for me. Best of luck xx
Hi. I agree with others that your GP is not the best person to ask. I do hope it’s not cancer but before I was diagnosed I had a small pelvic pain that then shifted so that when I had A bowel movement there was more pain and pulling. It turned out my tumor had attached to my colon. Your pain might be scar tissue pressing on your colon but you could maybe ask for another CA 125 test? Or a physical exam? I really have my fingers crossed it’s not cancer!!!!
Thank you Delia2 - it is hard not to panic as my CA125 has risen to 407 Yikes!! I am guessing there is something going on somewhere but they cant find it, so think I am suffering stress big time, I was diagnosed with IBS in my 40's but never had symptoms this bad. Hope it is.
Lyn, yr CA125 is 407, yr in pain when u empty ur bowels and ur gp thinks its more likely to be IBS? I hope and pray thats 'all' it is but id want to be certain. I cant help but say again u really need yr team to be aware. Pls dont just accept what yr gp thinks it might be, press to get an answer and dont feel yr making a fuss xx
Thank you Kath, I know you are right, I should be treating it more urgently, I have another CT scan in two weeks and bloods, my CNS has said that as soon as the results are back my oncologist will see me, so I am happy with that. I am feeling much better having tried suppositories and laxido, even went out last night for a "Put and Prosecco" evening, relaxing for a few hours has helped no end, the stress in my neck and shoulders has gone, and I am going to take up golf! I really think the doc may have been right (on this occasion) as I have been very very stressed about my CA125 and a recurrence, but what will be, will be. I will cross that bridge when I come to it. I hope to eventually be in remission for 11 years like you! you are my inspiration and that gives me hope. x
Hi Lyn , random pains are always a worry . I had pain on my left hand side , when I told the prof he said it was diverticulitis, and to get back to him if it hadn’t settled down in a couple of weeks. I went on a soup diet and upped the lactoluse . It did settle down after about a week.
Yes I would definitely discuss with your CNS team. My only experience is when I was in terrible pain after my first chemo, like spasms, started when I was trying to open my bowels but then was almost constant through the night, worse than labour pains. The CNS ran ahead and arranged for me to go to AE for an X-ray to check for bowel blockage. Was so efficient they were waiting for me and took me straight to a room for the X-ray. Luckily it turned out to be severe constipation, worse pain ever but some Iv paracetamol and anti sickness drugs sorted the pain, Along with suppositories for the blockage. Had this lovely young Australian Dr showing me my poo backed up on the X-ray ! And then coming to check on me every 20 mins to see if there had been any movement! Great NHS service. The funny thing was I thought I’d been going regularly but obviously not enough. After that I used laxido to make sure.
Hope you get sorted and get some pain relief soon.
Thank you Kim, I have always thought that constipation meant that you weren't going at all but I have learnt that I could still be constipated and as you say a bit blocked up. I have got Laxido and suppositories so will give them a go. Yesterday scared me, the pain was so bad I broke out into a sweat, once I had "been" I was fine, unfortunately this all happened in the local cinema!! my bowels really do have a mind of there own and pick the most inconvenient of places. 🤣
Lyn, have you had a colonoscopy? Very important to rule out serious issues in that area. Do not be brushed off! I had similar pain and was misdiagnosed by 4 doctors over a two year period. They were ALL wrong! I was repeatedly told I had IBS when all along it was OC.
Thank you - I suspect that will be a recommendation if it does not resolve itself by the time I see Oncologist in a couple of weeks time. The pain is easing but still there.
I've had that pain, or something similar; you mentioned it was over the pubic bone? I don't have it all the time, but when its there, as the need to have a bowel motion increases, the pain increases - its centred on the pubic bone, or feels like it is, but in my case, having had a good prod around, I found my hips hurt either side, sort of in line with the pubic bone, but I'm only aware of the pain at the front. Once I've been, it goes - I'm 99% sure its caused by an irritable lumbar back, particularly in the nerves coming out of the sacrum. All I do if its bad is stick lots of magnets on the sacrum and round to my hips, and anywhere else it's possible to stick something on if it hurts when I press. The nerves supplying the lumbar back also supply the bowel, so wanting to pass a motion causes an increase in pain which means I notice it when I need to poo, but don't notice it otherwise. Well, most of the time, sometimes I'm only too aware my back is playing up, I've even had what feels like the pain of piles when I sit down, but no actual piles, its just the nerves playing up. I've experienced it well before I knew I had OC, and a few times since i had surgery last year. I had it last week, and if I prod across and either side of the pubic bone when I'm not aware of the pain, it's tender ... but then I've had a dodgy back for years and years.
On the subject of constipation, I was listening to something on the radio the other day about that; apparently, gastro enterologists are on the verge of (or actually are) issuing new information to GPs, telling them that just because people are passing motions every day, doesn't mean they haven't got chronic constipation. The old idea of if you open your bowels daily, you're not constipated is not true - its more whether you have to strain, feel motions are incomplete, feel full, bloated, uncomfortable or have vague nausea even though you are going to the loo. Certainly, I've been going around 3 times a day for a long time, yet my CT scan on 30th May showed I was full of, well, you know what (the temptation to make a crack about being full of s%#! in more ways than one was almost irresistible), but without blockage. I wasn't really aware that was the case, but I got the movicol out as soon as I heard that result...
Miriam
Hi Miriam - I think nearly every lady on here has at some time or other had bowel problems, when I think of what we have all gone through with chemo and lengthy operations I suspect the abnormal is our new norm - sadly. I am feeling better today thanks to suppositories and laxido (thanks Kim xx) I am also considering colonic irrigation. but will await my CTscan results and run it past the Onc. xx
I completely understand your worry! Please put your mind at ease. I have always experienced pain and pressure in my pelvic area. Especially from the constipation. This causes inflammation which drives up your CA. I just went through this. Went to see a nutritionist who gave me a cleanse:detox to follow. It got rid of the inflammation. CA also went down which I was most thrilled about. Pelvic ache is still there for me. Had catscan, bone X-ray and physical therapy. I guess it’s a little gift that chemo left behind. I don’t even notice it anymore.
Sounds like pain I was having. Soon after I ate stomach would start hurting and needed to go have bowel movement and then pain would stop. Found out I had 6 hernias, had surgery to repair and no more pain. Not saying that is your case, but could be.
Best of luck to you and praying it’s something they can fix.
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