Pelvic venous congestion

[Kim89]

Any sufferers out there. I'm 26 had no kids just wanting advice please

[wynta]

Hi Kim Just to say that I still use this site. I think that most of us on here are in your position, looking for how to get relief from pain / how to get a diagnosis. Sometimes reading that others are in the same position makes me feel not so alone. I'm not able to help you other than to say that taking Nortyptaline (similiar to Amytryptaline) at bedtime helps me to get some sleep. I'm sorry that you are going through this and I wish you luck with getting help for it.

[Kim89 in reply to wynta]

Thankyou very much. It's so painful. I not long had a disc replacement in my neck and this is more painful. Going to gyno soon to get a definite diagnosis. But all my symptoms sound like it. I'm on endone and targin and just normal panadol.

[PPSN_JudyB Pelvic Pain Support Netwo]

Hi Kim,

I don't have this condition myself but know a bit about it because our charity : Pelvic Pain Support Network is supporting current research on pelvic venous congestion. We may be able to help regarding health professionals who have an interest in treating it.

What treatment have you tried so far ?

[Kim89 in reply to PPSN_JudyB]

Hi there.. Can I message you so no one can see? I'm new to this site only joined today..

[PPSN_JudyB Pelvic Pain Support Netwo]

Yes, you just click on the blue log on name here and then on message.

[wren44]

I had the first part of the procedure done at Johns Hopkins in the US over a decade ago. I've learned so so much more about pelvic pain since then ... as has the world. Frankly, for me, the surgery was totally unhelpful and very very expensive. Given the amount of literature that suggests "Pelvic venous congestion" is a benign condition found in over 40% of women autopsied, the vast majority reporting no pain or problems, I would choose to avoid that particular intervention. If you haven't already, I would start by consulting a highly-trained pelvic pain physical therapist. It is my opinion that they represent the cutting edge of knowledge on pelvic pain (they tend to be the ones training the physicians these days.) I understand the desperation that drives so many sufferers to have unnecessary surgeries. Unfortunately, that route too often ends with further complications and pain. There are so many non-invasive options available today. I gently recommend exploring them with a really GOOD PT. Well wishes to you!