Chronic pelvic pain when walk

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Hi, would like to know if anyone else has been in my position.  I have had pelvic pain for over 2 years now, after trying urologist, accupuncture, physio etc my mri scan showed up a hydrosalpinx however the gynocologist said that my symptoms dont tally with this?  Initially I agreed to an op to remove fallopian tubes but later cancelled after looking at the risks of the surgery and the fact that she doesnt think it is the cause of my pain.  The pain is just above the pubic bone and only hurts when I am walking.  No problems with cycle, any one any similar experience?

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  • Posted

    Clair, have you had a read through the condition: pelvic congestion?
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    • Posted

      No, unfortunately not.

      That's the problem many referring docs don't get.

      MRI for one and the same region

      has many different protocols, pulsings and weightings, axis and slice thickness/distance, depending on the indication,

      WHAT should be looked at.

      A search for deep endometriosis in MRI (yes, MRI can help there too when extensive endo is expected like growing into rectum, even many deny) is different to a search for ovarian cysts or tumors or bowel twists or blood supply issues or just a blind organ scan.

      Of course if something is obvious to the blind eye like a huge ovarian cyst during a bowel scan or an aneurysm is seen, it will be mentioned,

      but especially for endo or pelvic congestion

      the changes are minimal and need a certain protocol and focus.

      Even with this focus it cannot be 100% diagnosed, it's difficult in itself already.

      Regarding bloodvessels there are two MRI protocols and they run differently!

      MR angiogram and MR venogram.

      (it is not invasive, you get a contrast in arm vein but that's all; it is not the intervention radiologist who puts up a catheter through vein, that is later for treatment).

      It needs a radiologist,

      who has training and experience in the 'vascular' field.

      We had 2 MRIs pretty much for nothing, well, big blown up bowels and ovarian big cyst could be checked, but not for pelvic congestion as I asked for and trusted, they knew what they were doing.

      Upon scanning through the pics myself, I discovered that this was not the correct protocol, the result even said 'no artrial problems seen'. Artrial?

      I asked for pelvic congestion syndrom exclusion (and pelvic floor assessment)...and they did not do a vasalva manouvre during MRI hence unable to assess the pelvic floor, pics stopped far too early for pelvic floor transverse axis and only did one protocol for ARTRIAL blood supply, which is saying nothing about venous system.

      rolleyes

      So you need to specifically ask for pelvic congestion = MR venogram

      and be sent to some radiologist (maybe even interventional radiology center, that do MRI diagnostic, too, not only treatment, they sure know what to look for)

      who has experience in this vascular field.

      Everything else is pretty much wasted time and money.

      Very frustrating that actually you as a patient have to make sure about it, at least that is my experience here where I am and did not think I would have to.

      Hopefully radiologists are a bit more focused and trained in other countries/areas.

      Please read up about pelvic congestion and the symptoms (if they made sense in the first place) and diagnostic methods, there are a few more.

      You do not have to have varicous veins on your thigh or pubic area to have pelvic congestion syndrome. There are even very rarely teenagers described with this problem and took long to get diagnosed of course.

      And yes, MR venogram (MRV) or pelvic congestion? has to be written on MRI referral otherwise it's the wrong MRI to even look for pelvic congestion.

      Frustrating is too, that it is still not done in standing MRI mode, but lying, which alters this condition...duh. I found one center that has a standing MRI possibility, but they only do physical joint problems since figured out, spine, joint problems show up in standing better than lying. What a surprise...not.

      Since they are not trained radiologists for vascular problems, they cannot perform a MRV even the standing one would be gold standard logically due to gravity.

      Best of luck!!!! (Have a look at your MRI result, I am pretty sure it says nothing about venous system)

       

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    • Posted

       Thank you again for that detailed answer, I do not have pain on standing and sitting but solely when I walk, could this still be pelvic congestion?  I shall definitely follow this up and query with my GP anyway and request the appropriate mri scan. 
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    • Posted

      I don't know, if your symptoms still fit into PCS, but sometimes it's worth checking their opinion for some rare conditions. 

      It's not your hip joint playing up either, is it?

      Maybe it would be good to re-check on your hydrosalpinx anyway too. I have no experience with hydrosalpinges and their spectrum of symtpoms.

      Best of luck!

      Chronic pain is so life disabling.

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    • Posted

      My daughter has been suffering terribly and with half hearted investigations, misinterpretations and waiting for ages.... nothing is excluded, just with teenagers they quickly jump to the assumption of 'wrong nerves firing for nothing, wrong brain wiring' 'just a post virus function problem' and it is massivly exhausting proving them wrong by simply following different approaches via medication for months, which do not help or having waited the so called 'it will be fine in 6-12 months', nothing is fine, the pain continues....

      seeing a pediatric rheumatologist (expensive, private fee again) tomorrow and picking her brain (since she seems experienced in connective tissue problems, hyperflexible ligaments, general pain) and just writing my list together of history, good and not good examinations, open questions, while my daughter is tossing and turning in bed giving me time to do so. She has learnt that she doesn't die even pain is massive at times, but it's no way to continue life like that without hope to get better.

       

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    • Posted

      Little mind spark:

      have you tried myofascial release massage?  There are many muscles that attach to the pubic bone. 

      Or did you look up osteitis pubis? (does coughing, sit-ups hurt, too?)

      I also wonder if a different physio might actually assess and treat differently?

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  • Posted

    Hi Claire I don't know if we have the same problem or not. I have continues pain in my right side, low down in groin & it makes walking & climbing stairs painful. Ive had it for about 4months now & laparoscopy showed nothing, its affecting my whole life now I can't do anything because of it & I'm certain my Gp thinks I'm making it up. I'm due back to work on Wednesday & don't know how I will manage. I am 62, live alone so money is tight but even so I have paid to see a private eurogyneacologist in desperation to have it sorted out, I cant live on pain killers much longer.

    I hope you get sorted too hun.

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    • Posted

      Hi Colleen, sorry to hear what a rotten time you are having.  Perhaps you could see a different GP as yours sounds less than sympathetic.  I too am back to work on Wednesday! and hoping I will manage, perhaps it will help take our minds off it a bit? Good luck with the eurogyneacologist, do you have to wait long for the appointment? 
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