Pelvic congestion syndrome

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Hi I have constant chronic pain in the pelvis with low back pain 24/7 ,since I was 35 yrs old ,I am now 68yrs. I have lots of symptoms that sound like pelvic congestion syndrome could somebody out there tell me could I have this at my age and for all these years.I have been given no diagnosis.Thank you

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8 Replies

  • Posted

    Hi Maureen what other symptoms do you have? I am currently waiting to have a pelvic venogram to check my pelvic veins. I have had MRI and CT scans both show engorged veins particularly in my cervix I have constant lower back, pelvic, vaginal and real pain x
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    • Posted

      Hi Karen, I have constant aching, burning, always described it as a constant raging toothache in pelvis. I can't stand for any length of time, or sit,or walk much I always have my heat pad or hot water bottle, and lay wherever possible.I get dreadful dragging and acheing underneath me and feel so tender in the vagina. I have estregen cream as gyno said its vaginal dryness,but I don't think it's just that. To have an internal is absolutely dreadful, and can't remember last time we were able to have intercourse, not that I ever feel like it.I have a really big vein going from bottom of left leg up to the groin. Nothing has ever helped with any of this.I have had all the usual mri,nerve blocks,most things,numerous pain coursesThe doctors don't want to know, it has ruined so much of my life

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    • Posted

      Hi Maureen gosh I cannot believe your symptoms are just like mine I too have had nerve block injections in my pudendal nerve. I was prescribed vagifem but made it worse. Have you had a look at the whiteley clinin web site it's in London dr whiteley is the uk specialist apparently.. He's private though. Where in the UK are you ? X

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    • Posted

      Hi Karen, thank you for your reply. Sorry you are suffering so much.I live in Eastbourne. In East Sussex.I to have been looking at Dr Whitely in London, also a Dr Crowe in Birmingham who is a specialist radiologist, I think he goes to London also. It is so difficult when it is private which I don't agree with but feel I would do anything just to find out.Do you mind me asking how old you are Karen?,doesn't matter if you don't want to say.How long have you been suffering? Thanks again .x

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    • Posted

      Hi Maureen I'm 54 been building up for the last 5 years but the last year has got unbearable had sigmoidoscopies 3 times as doctors were convinced it was bowel related had slight prolapse had that repaired had 2 lots of nerve blocks MRI and CT scans. Like you sex is out of the question vaginal pain is too much. I went to see an interventional radiologist he is going to do a venogram to check pelvic veins and embolism if necessary I'm waiting for the appointment. It seems like not many doctors treat on the NHS do they. 

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    • Posted

      Hi Karen, Hope you don't have to wait too long to see radiologist for monogram.Is it through the NHS. It would be lovely if they could get you sorted. I can't imagine for one minute what it must be like not to be in pain.where abouts in the Uk are you? Like yourself I have been told different things IBS ,prolapse,endometriosis etc.X

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    • Posted

      Hi Maureen I am in Manchester. Yes interventional radiologist is NHS. Same here IBS coccyx, amongst others. I have seen some doctors private through desperation but got nowhere x
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