7 Years of undiagnosed Pelvic Pain & Bowel Issues and at a loss :(

[Lydiarose84]

New here. For 8 years I've been going back and forwards looking for a diagnosis for my pelvic pain. It started with bouts of alternating loose stool & Constipation with bloating which has become worse and worse and is now pretty much loose yellow foul smelling stools every day up to 3 or 4 times a day. I have constant pain in my lower right pelvis which at times can be sharp and stabbing or dull and niggling, I am never without pain in the area, and always feel bloated. When I lay flat I can feel a hard lump where my colon is, and it hurts to press, this feeling never goes away, even when I am walking about I feel like I am carrying something there like a cyst or something, and I can feel it as it feels uncomfortable and alien in my body. This pain now effects my right bum cheek, and can radiate down my leg, some days I walk with a limp, it has only started hurting my leg this year, and despite my best efforts to exercise I am finding it hard with my body feeling so obstructed. I have had blood tests, stool tests for IBD, MRI of spine, MRI of small intestine, bile salt test, sigmoidoscopy and a laparoscopy about 5 years ago, everything comes back normal, Ive had transvaginal ultrasounds about 4 years ago, I am at a loss with where to go next. Ive tried the low FODMAP diet, tried cutting so many foods out, I cant find any link to my symptoms. I feel so unwell like this is affecting my skin, my hair is thinning, and I feel exhausted, lately at times I feel light headed like I will pass out. Does anyone have any advise with how to go about finding out what is wrong? I cant live like this anymore, I feel like I am walking around with a big cyst in my pelvis, but surely that would have been picked up on imaging by now? Thanks for the help.

[kalecolbe12]

I was wondering if you have tried pelvic floor physical therapy because that is a good way to get assessed that is their specialty to figure things out with your muscles and nerves in the pelvic floor....also there are a lot of people try nerve and/or muscle relaxing medication with a lot of success over time and time and patience seems to be a big thing with this as well as learning relaxation techniques,breathing and also people try acupuncture and chiropractic,medical, Chinese medicine and other alternative things which all add up to ultimate improvement....sadly some people go to many doctors and have procedures that are not nessesary because many medical professionals don't understand pelvic floor problems....I myself have pfd and I am in my 5th month of pelvic floor pt and am on a muscle relaxer.....ultimately I may get Botox in the pelvic floor but this area is very complex so I am trying internal valium suppositories this week and we shall see how that goes....I hope I have helped a little and you can message me for support ,questions or just to talk.i know it feels very isolating but you're not alone in this I promise

[Ftm79 in reply to kalecolbe12]

Hello!How are you now? Did you recover ? I have been suffering for four years and really dont know what to do

[kalecolbe12 in reply to Ftm79]

I wouldn't say I've recovered but I'm managing things quite well..I did end up taking a nerve pain med which has helped a lot since we think it was neuromuscular and I do meditation breathing and stretching I just elected not to do any procedures so far as I'm managing okay

[edythe]

You must be suffering a lot with all these symptoms. I totally agree with Kalecolbe 12 that finding a women's health PT might well be a way forward as such people can show you the connection between the different areas of pain and where it originates. Then try and find a doctor who has some knowledge of pelvic pain and to whom you can relate. Perhaps a PT can advise on this. Osteopathy, TCM, mindfulness are all ways which may help - try some out, especially ones you may get a recommendation from friends or family from. And persevere! All the best.

[Gjkas]

Hello there, just reading about your problems and I can sympathise with you. Have you actually sat down with your G.P while they have had all your test results on Screen. Im only asking because Ive had similar symptoms for a few years. 16 months ago I was rushed to hospital because they thought I'd had a stroke. I'd only gone to my G.P for some more antibiotics.I was getting over a chest infection, but i just couldn't shift it. But when the Doctor saw me he said (WHAT ARE YOU DOING DOWN HERE YOU SHOULD BE IN HOSPITAL. IT LOOKS LIKE YOU'VE HAD A STROKE ) I said No it's alright, it's the Fibromyalgia playing up .Anyway I ended up in hospital and i only went to get up off the bed and that horrible pain in my right hand side of my stomach caught me and I groaned. Well the Consultant heard me and asked me what's wrong, and I told him. They were really good though. Within an hour I was down having an ultrasound. Anyway an hour later he was back again and he told me that I had an enlarged liver, blocked bile duct, Cyst on the pancreas and gallstones. I told him that I knew about the Cyst on the pancreas and the gallstones, because my G.P.told me about 2 years ago. He said (WELL WHAT HAVE THEY DONE ABOUT IT ).I said, Well nothing. That didn't go down very well. The next day I had an MRI, they thought I had Pancreatic Cancer. My Mum had Pancreatic Cancer and passed away 6 months after diagnosis. So then I had to have a MRCP SCAN.But i said I'm going home, I'd had enough. Anyway I had the MRCP SCAN as an Outpatient. The results were much better, the liver has gone down and the bile ducts are now clear. Everything else is just the same, I'm now going to see a Gastrointerologist .But what I am trying to say is,if your G.P referred you for those tests tha results will go back to them, not the Hospital. Then really speaking it's up to the G.PS to make sure you see the right Specialist. Which mine apparently didn't. Gallstones can cause severe pain just below your ribs on the right side of your tummy, spreading right down your side and across your pubic area,it even causes pain in your right shoulder. Sometimes I have to hold my stomach just to walk because the pain is so bad. I have pain in the left side of my tummy, but i know what that is, ive had it for years ( UMBILICAL HERNIA ).Go back to your Doctor and insist that something is done about it. YOU DON'T GET PAIN LIKE THAT FOR NOTHING. Tell them what you have told us on here today. I hope things work out for you.🤔.Gjkas

[Skye22]

From what you say, it's been 4/5yrs since you had some tests done. My advice would be to ask your GP to refer you back to a colorectal consultant to rule out any issues with your bowel. I have severe problems with my bowel which is being treated and supported with my colorectal doctor and urogyneacologist as it affects my bladder as well. I can really empathize with your pain as I have suffered for many years (30) and it has only been in the last 4yrs that I got some final diagnosis and proper treatment and support. We know our bodies better than anyone else. I ended up getting referred to another hospital as my local one was useless with doctors just not listening. I now have an all female medical team, this was deliberate in my part as I felt a female doctor could relate to me as a woman and empathize to what I was going through and diagnose what my conditions are. It has been a long stressful painful plight and I am now more realistic to what my options are. Stay strong and I really hope you get to know what is going on in your body, and can work to getting better.

I would like to add that our NHS gets some bad press but I wouldn't like to think what state I'd be in without their dedicated care and support. Wishing you good health .

[Cheryltowers]

Well, I agree with everyone. After 5 abdominal surgeries due to complications from colon resection for diverticulitis, I ended up with Pelvic Floor Dysfunction. It won’t go away and my symptoms are similar in many ways. I see a urogynecologist aka as GYN and gastroenterologist. We tried PT and though it didn’t help, I learned a lot and now understand much better. Keep us informed.