Administrators what do you think? - Pelvic Pain Suppo...

Pelvic Pain Support Network

19,422 members5,665 posts

Administrators what do you think?

costagran profile image
9 Replies

I,ve had a result from an MRI naming Pelvic congestion syndrome.

I,ve never seen it mentioned on this site although after a bit of research i realise theres quite a high percentage of mostly women that have found a conclusion to their mysterious pelvic pain.

After 7 years of being sent from gynno to urology and digestive specialists,all of whom give me different medication,i am delighted that an observation has been made.

But now i am stuck.i have no idea where to go from this point.

Any advice would be appreciated.

Written by
costagran profile image
costagran
To view profiles and participate in discussions please or .
Read more about...
9 Replies
icrelief profile image
icrelief

Here’s an article from the National Institute of Health; I hope it gives you treatment ideas to discuss with your health care providers. Best wishes! ncbi.nlm.nih.gov/pmc/articl...

costagran profile image
costagran in reply to icrelief

ok i,ve read it but its kinda very 'doctor' talk.

i've deducted that i need a venograph and then a embolization.

will keep you posted.

may take another 7 years here in spain.

thanks for your input.

icrelief profile image
icrelief in reply to costagran

Buena suerte!

costagran profile image
costagran in reply to icrelief

muchas gracias

Rxmom profile image
Rxmom

I saw dr Poyner (obgyn) in nyc - to rule that one out. But I believe she would deal with it if I did. If not, Allison Shrikhande from pelvicrehab in nyc who is my pelvic floor QB/ expert could be contacted. She is head of AMA pelvic floor group. They may be able to give you a name in your area. Good luck

Grace13 profile image
Grace13

Hi, following 8 years of unexplained pain and discomfort I was diagnosed with pelvic Congestion Syndrome around two years ago. Here in the uk the condition is not well understood by gynaecologist and I have subsequently had several unnecessary and intrusive treatments for the condition which ended with the recommendation that I have a hysterectomy ( I have not yet had children) Following undertaking my own research the recommended treatment was available here privetly however i later discovered that two hospitals offer this on the NHS and had my doctor refer to them. I have recently undertaker my operation and am awaiting to see the results. Please contact if you have any questions or need any support it is important that you receive support from an interventional radiologist. The condition is to do with the Venus system and as such is not a gynaecological complaint

costagran profile image
costagran

your last comment that pcs is nothing to do with gynno.

i understand yes.. but after my mri the gynnos are saying that my pelvic varicus vein is so very 'small'...

f....ing frustrating as this mri result was my answer to my pelvic pain of 7 years.

the gynnos havent got an alternative answer. scream scream scream.

i'm now waiting for all my test results from the urologist who are fixated on helping me with my incontinence.i've told them i just want the pain near to my left ovary diagnosed, but no, they think that they must concentrate on the fact that i have a tiny leak after 3 sneezes.

for gods sake how often does that happen. i can cope.

i'm hoping that they find my bladder is prolapsed.

i'm not sure if we have interventional radiotherapists here in spain on our nhs.

someone was talking about multi disciplinary tests on this site.

if only.

the minute you mention an organ that that does'nt fit in with their expertise your goosed here.

whatever..i'm 71 tomorrow and intend to enjoy my day.

in fact i've already treated myself to a g&t.

well done to you doing your research.

have you had a hysterectomy then.

i hope you have a good recovery and your pain has eased.

Grace13 profile image
Grace13

Hi and happy birthday

It was a pelvic vein embolisation that I had. My PCs showed on mri and in a lapascomy but to fully diagnose you need to have a scan with contrast this will show any vein reflux which causes the pain. They usually perform on a tilted table to show the blood flow. PCS can cause bladder issues also

Hope this helps happy birthday

costagran profile image
costagran

cheers Grace.

how are you feeling.?

You may also like...

What do you think caused your CPPS or Pudendal Neuralgia?

on CPPS have I realised just how much I was clenching my butt without even realising I was doing it,

morning whats the do surgens use on you for a inteior bladder repair and ahystrectomy

out bed to walk after op and how long do you normaly have to stay in ahospital after .i just think...

Not sure what to do next

been dealing with horrible pelvic pain, nausea, fatigue, depression from not being able to get help.

I have a question for the administration of the site.

need permission for it. What if everyone on the site wrote down in a post everything they are doing...

Please help. I don't know what to do.

bleeding constantly for 3 Years, and have various digestive symptoms such as diahorrea every day....