Pelvic congestion syndrome?

[aften16]

I went for a follow up appointment at my gynocologist today. She wants to do an MRI to test for pelvic congestion syndrome. Has anyone heard of this? I did some research and it is insane that I am experiencing literally every symptom associated with this. I was diagnosed almost a year ago with pelvic floor dysfunction, which as you all know is a very vague diagnosis. It has been a year of pelvic floor therapy, muscle relaxers, antispasmadic drugs, stretching exercises etc.... And with only some improvement I have been skeptical. For the past year I have said that I feel like this is related to my menstrual cycle or hormones because my symptoms intensify with the onset of menstruation. It will be nice to finally get some answers if this is really what it is. Any insight or knowledge about this syndrome is appreciated. Thank you!

[kalecolbe12]

Yep I do think hormones have something to do with pelvic floor dysfunction...but like you said pfd is so vague because let's face it specialists and doctors don't know much about the pelvic floor..they just throw things at you and hope it sticks so to speak... I don't know about pelvic congestion syndrome but maybe that's what you have it's just a new term I've heard recently....a few years ago I saw four specialists and they didn't know what was going on and it was the physician's assistant who told me they thought I had urogenital atrophy after menopause... Which meant I just needed some genital hormones and I took vesicare for overactive bladder because I felt like I wanted a to pee 24/7 and that took a year-and-a-half to get better.. .That was how simple that was and the PA not the specialists helped me!!! now 8 years later I have PFD again but it's rectal and sometimes urinary and the nerves in the pelvic floor rectal area so yes I am on anti-spasmodics and muscle relaxants and have gabapentin in case I need that....and then of course and I think a lot of it is stress related because my PT told me that I was but punching a lot and that's what caused everything to cramp up now we're in the process of trying to uncramp it but of course I've got to convince the mind that there's no tight muscles are now after all this time of loosening them but the mind does not so easily convinced so then it still thinkd there is pain there...i am similar to you I've been in eight months of pelvic floor physical therapy which has helped somewhat but if I come off from antispasmodic muscle relaxants it kind of comes back after a few days but I take a break... I actually couldn't take internal rectal trigger point therapy but I could do the vaginal which helped and then she did mobilization and pudendal nerve glides which helped somewhat. I think it takes about 2 years or a little more to get this condition calmed down and yes I think we need some hormone treatment to help with it...but it sounds like I'm quite a bit older than you so I don't know about menstruation part but yes that's hormonal of course

[Hidden]

Hi

I read in another post that pelvic congestion syndrome is when the blood vessels swell and contract in the pelvis (a bit like they do in migraine in the head). I've no idea if it's right or not. Think it was someone who had seen Dr Demello in the UK.

My own little logical theory is that when the pelvic floor is so tight and inelastic the organs and blood vessels are obviously restricted. Obviously the hormones affect this too as does the monthly cycle.

My own MRI scans have shown up normal.

Like the other lady who has replied, I'm much older and post menopausal now. I suffered with the front part for 30 years. They never found anything but endometriosis and I just lived with it. Pelvic floor dysfunction was unheard of in the 1990s. Now it's affecting the rectum and I've been diagnosed as it were but mainstream medicine still doesn't seem to recognise it in the UK. I'm still hopeful of significant improvement through physical therapy, osteopathy, chiropractors, acupuncture.

Wishing you well in your journey.

Korin

[aften16 in reply to Hidden]

Thank you! Good luck to you as well!

[Konagirl60]

Have you had prostaglandin measured? It’s the hormone responsible for the uterus smooth muscle contracting during menstruation. Prostaglandins are made by the endometrial cells of the bladder are released when you bleed. I think too much prostaglandin causes endo and pelvic congestion.

I took Ponstan for a couple years to no avail. I think stress causes this syndrome.

[aften16]

I will definitely inquire about this with my doctor. Thanks!

[Bournemouth007]

Hi,

I had a laparoscopy to remove an endometrioma cyst from my left ovary, and they found Pelvic Congestion Syndrome on my right ovary (where I was experiencing most of my pain).

I’m 28 and have no children yet so a bit nervous about what this is or how to treat the pain. Have a follow up booked in 3 months to discuss options as I assumed it was all endometriosis and could be treated by cutting out.

[aften16 in reply to Bournemouth007]

I just received an MRI yesterday. Anxiously waiting for results. Hopeful, some answers will come from this!

[lucikam in reply to aften16]

What is your results? How are you?

[aften16]

My results were negative 😢 they found nothing. Very frustrated. I think the next step is exploratory laparoscopic surgery. After this whole corona virus mess is over...

Thanks for asking about me though! This quarantine has been very rough stress wise and my pain has been through the roof. I'm sure many other people are experiencing this too.

[Stillsomehopes]

Hi,

I am officially diagnosed and treated with pelvic congestion syndrome. I believe that the diagnosis can be suspected from Ultrasound, MRA, CTV or venogram. You mentioned MRI. Is it with contrast?

I have been through a tough journey for a year since most of doctors do not know this condition. I am persistent since my symptoms match this condition. As you said yours also match, I would like to recommend you to have a proper investigation from experience doctors. I understand how much pain you have been through.

One test I would recommend. If you lie down with pelvis higher than the heart level and all symptoms go away within half an hour - and never comes back while you are still in this position, that might be a very positive sign for PCS.

[aften16 in reply to Stillsomehopes]

Thank you! Unfortunately there aren't many specialists in this area. I'm not even sure where to go for a second opinion.

[Stillsomehopes in reply to aften16]

Where are you? I can look it up

[Rhea247]

I know this is an old thread but have you tried the Whiteley Clinic?

thewhiteleyclinic.co.uk/new....