I would like to hear your experience of pelvic congestion syndrome

[Tmacca]

Dear Team,

I have been recently diagnosed with PCS. 

I have been suffering from pelvic pain for a few years now. I have adenomyosis which appears to be controlled well with the mirena coil. In October 21 I was admitted because I was in so much pain in my lower right abdomen and again in May 22.

On the 8th June 22 I had an operation to remove my ovarian dermoid cysts, ovaries and fallopian tubes via laproscopic procedure. It was then I was diagnosed with PCS.

I am in so much pain every day. I am still on sick leave I am still waiting to be seen by the pain management team and physio for pelvic pain management.  I had another Mri on the 10th September to rule out refered pain from my back..

My selection of pain relief is limited. I can only take paracetamol and cannot take anti inflammatory drugs because I have kidney problems and I am very sick when taking opiods. I use a Tens machine which for a very short time reduces the pain.

Have you been successful in finding treatment that works to get control of the pain.? I am interested in your story.

Thank you

Trish

[Desperateforrelief]

Hi Trish, I am so sorry for your pain. I had adenomyosis and cystic ovaries. I know how painful it is. There is not much I can say, I went through this for a long time during 70's and 80's. I called the heating pad my best friend. Thermacare makes a heat source you can wear under your clothes that can help. Ice did not help, even though inflammation involved. Medicine was not where it is today so the ultimate help I got was a full hysterectomy. That can cause other issues later on. I am happy to hear mirena has helped you and I am wondering, how dies that work?? But I am happy to hear it does. Hot baths with epsom salts also helped, temporarily, but relief is always welcome, even if short. I would check to see if there are any blocks that they can do. I am getting a block into my abdomen. This is a relatively new procedure. I cannot take NSAIDS either and they do work for this pain. Inflammation is part of the problem. You can google anti-inflammatory diets, this has helped my daughter some, she inherited some of my issues, unfortunately. Learn everything you can about your condition and anatomy so you can talk to your doctor and help them help you. I found it very frustrating that I had to study my own anatomy- that's their job. But the rewards from it were more than I expected, plus it let the doctor know you're serious about getting better. They listen better and are less apt to write you off. I wish I could tell you about a silver bullet - there isn't one. Although they are coming up with new help all the time. Hang in there, I hope you find the help you need!

[Tmacca in reply to Desperateforrelief]

Really appreciate your reply.Thank you

[Desperateforrelief in reply to Tmacca]

You're welcome.

[Konagirl60]

Try using turmeric pills, using fresh ginger in tea or healthy stir fries, use more cinnamon, using black pepper and drinking green tea.

Other anti inflammatory foods are omega 3 fish like tuna and salmon, grapes, walnuts blueberries, olive oil and garlic.

Just suggesting natural anti inflammatory foods.

[Tmacca in reply to Konagirl60]

Thank you so much x

[Rachel20]

Hi .I was diagnose from a scanas having pelvic congestion syndrome. I read the symptoms and though finally i know whats wrong.All my.symptoms correlated.I went back to doctors, saw another doctor,expalined the pain and other symptoms and mentioned my pelvic congestion syndrome.He interrupted me to tell me that pelvic congestion was a contraversial diagnosis ( even though it was seen and diagnosed on an internal scan) and that it wouldnt be causing my problems.It was then decided without talking about any of my symptoms that it was endometreosis..i just wondered if you have been diagnosed the same way and if your doctor believes in it

[Rachel20 in reply to Rachel20]

i also have terrific siatic pain that inly comes on during my menstral cycle and always have to get my legs

[Rhea247]

I too believe I have PCS. Have you seen the information from The Whiteley Clinic? They have researched this condition, with published papers. I’m hoping for a formal diagnosis through them although it’s very expensive for the consultation and scan.

thewhiteleyclinic.co.uk/new....