Sarisota

Hi, I've been Googling this recently because although I haven't been diagnosed, I am wondering if this is what I have. I think they do something to the offending veins which render them useless. I don't think the procedure needs you to be cut open. I think this is done via a guided needle. But what I have said is only what I understand it to be, I could be totally wrong. Do you mind me asking what are your symptoms? I have such horrible discomfort in my groins, lower buttocks and right across my abdomen just about an inch above my pubic bone. When I rest it eases but as soon as I'm active again, back in comes with such lower back discomfort. Were you diagnosed by having a scan? I hope you can soon find some relief from the pain you are experiencing.

sharelle

Hi there I would be interested to know what happens with you as I think I have this, although not diagnosed (waiting to see gynae, it's only been 9 months waiting!!) I have lower abdo pain about an inch from my pubic bone. The way I describe it (although a little crude) is like someone shoving a knife up there! It is worse some days, where even the initial act of sitting down really hurts. What symptoms do you have? Is it constant and how were you diagnosed? Thanks in advance x

unlucky2014 in reply to sharelle

Hi

It took me 8 months of continual nagging to then be referred to gynae and a year to find out exactly what was wrong with me.

I have always had heavy periods and the pain that was attached during this time was excruciating, however I was told that this was "part of being a women"

The main symptoms that occurred and caused me to be concerned was that after I had sexual intercourse I would get sharp stabbing pain and a numbing pain in my left abdominal / pelvic area.

This progressed onto what the doctors thought, was me having pregnancy symptoms, I stopped having a period, cravings, breasts hurt, tummy swollen, lower back ache, mood swings were unbelievable. With all this I still had a discomfort to my left pelvic / abdominal area. The discomfort would always be there, but sometimes I would have shooting pains that would lead me being in the fetal position.

Heat helped some of the time, however the pain was still strong, stabbing shooting pain.

I was diagnosed through having a laparoscopy - it was suspected endometriosis or PCOS (PCOS wouldn't show on ultra sound because I was on the pill)

When I came round for the laparoscopy I was shown the images and you could see how enlarged and inflamed my blood vessel was so was diagnosed with Pelvic Congestion.

Please keep going on to the doctors to speed up referrals.

Any more questions then please ask, at least we aren't alone

Reply (0)Report

Charleyct

Hi, I had Pelvic Congestion diagnosed in my lap last year (after 4years of being told the pain is all in my head!)

I am having the surgery in a few weeks, it's called an embolisation. i met with an interventional radiologist this week who assured me it will be quick and fairly pain free.

He will insert a small catheter into the vein in my neck which will allow him to reach the pelvic veins, he then blocks those off with a Small coil, which should cause the vein to clot and stop working, therefore stop the pain.

I will be awake for the whole procedure, but will probably be kept in overnight.

I hope that helps a little!

There is an amazing support group page on facebook that I totally recommend looking into, there are more sufferers than I realised!!!

Good luck x

Maddie123 in reply to Charleyct

Im sorry ladies to hear you are all suffering. I also have pelvic congestion however my gynea wont even talk to me about it. I had a laparoscopy in 2011 to treat endometriosis which i had for 10 years previous to that. During the lap the gynea who operated didnt find any endometriosis , so she went a bit deeper to find my congested pelvic veins. The male gynea will not refer me anywhere as he says its nothing to do with gynea dept. my dr has asked other hospitals if their Interventionsl Radiologist would help me, but everyone is refusing saying they dont do these procedures on the NHS anymore...so i have been left suffering with most of the symptoms you ladies have all described above since that last lap.

Charleyct. May i ask you what area you live in? I wouldnt even mind travelling to another area to have the procedure done. I also suffer with ibs, M.E & Fibromyalgia, but if i can get this pelvic pain sorted it would make life easier. Hugs to you all.xxx

Reply (0)Report

Mabes in reply to Maddie123

Hi Maddie

A google search seems to suggest that there are hospitals doing it on the NHS.

Where are you located?

Reply (0)Report

Maddie123 in reply to Mabes

I am in Caterham in Surrey. My GP wrote to Guildford Hospital who said they didnt even do the procedure and didnt know anywhere that did and i would be better off attending the pain clinic to manage the pain

Reply (0)Report

Mabes in reply to Maddie123

I've looked into it more now I know where you are. I read that there's only a small number of hospitals that do it.

Your GP needs to refer you to a specialist centre that does do it. These are usually at teaching hospitals. I noticed that St Georges in London do it - stgeorges.nhs.uk/service/di....

I suggest printing that page off, highlight the appropriate part and take it to your GP.

I've been referred to a London teaching hospital in the past as none of my local hospitals were able to deal with my health issue (at the time - I needed a pituitary specialist). So I believe if you cannot get the treatment you need in Surrey, your GP should be able to refer you to London.

Reply (1)Report

Maddie123 in reply to Mabes

Thank you so much for your help. I will get back to the gp with this.x

Reply (0)Report

Mabes in reply to Maddie123

I hope you get some help now. Xx

Reply (0)Report

unlucky2014 in reply to Mabes

Hi I'm located on the Isle of wight

Reply (0)Report

Mabes in reply to unlucky2014

Unlucky - have a read of this:

bsir.org/patients/pelvic-ve...

You can read about the surgical options on that page.

As I was saying to Maddie, there are not many hospitals that do the pelvic embolisation procedure so you might have to search our your nearest centre and ask to be referred there.

Reply (0)Report

unlucky2014 in reply to Mabes

Hi

Do you know if there is somewhere I can find this out? I live on Isle of Wight but don't know anywhere around that can do the op

Reply (0)Report

Mabes in reply to unlucky2014

Perhaps you could contact the British Society of Interventional Radiology and ask them if they could tell you where your nearest centre is that does it for PCS. Here's the link to their contact details - bsir.org/contact/.

Reply (0)Report

Hollyol

Hi, I see this is an old thread but I’m very new to this site and would be really great full to find out how everyone has been getting on in the years since this was posted? I too have pelvic congestion and seem to be one of the very fortunate ones as I was given a diagnosis.

unlucky2014

Hey,

Good news is I managed to get treated, but I ended up having to go private in the UK in order to get sorted