Pelvic congestion syndrome/decapeptyl

[rainbow616]

Hi everyone,

I've searched but haven't been able to find much. Has anyone been diagnosed with pcs? What symptoms does everyone have? My consultant has diagnosed me with pcs, but hasn't been very forthcoming with letting me know which of my symptoms are caused by pcs. I have the most obvious symptom of pelvic pain. I also get headaches and ibs type symptoms along with others. I have been told I will hopefully soon get an appointment to start injections of decapeptyl alongside hrt. Has anyone had this? Did it help? Thanks x

Anyone?

Hi @rainbow616 I've just come across your message whilst searching for PCS threads. How are you getting on? Have your injections and hrt helped? My symptoms are mainly pain-related (and things that could also be explained by perimenopause, like heavy bleeding). It may just be a coincidence, but I feel like my symptoms have worsened since getting my leg varicose veins treated a few months ago. I had a CT scan yesterday to determine which veins are affected, then I'll have embolisation. Is that an option for you? I hope you've found some relief; it's not much fun, and just not really known about!

@somanylights thank you for replying!! I've still not had the injections! My consultant told me he was getting the ball rolling for my first injection at the end of Feb!! I've called countless times and they have said I'll just have to wait for an appointment. Apparently the consultant wants to be present at the appointment with the nurse and he only works two days a week! 😡 I was told two weeks ago that I was top of the list (whatever that means) and that I have been marked as urgent. The pain used to be worse in and around my period but now it just crops up as and when! Some months are better than others.
I did go to the drs and ask if they could send a letter to move things along and explain that the pain is now more frequent and intense, but they refused 🙄 she did give me codeine but when it's bad, that just takes the edge off of the pain. I'm so fed up with it all to be honest! The consultant wouldn't give any more info on other treatments as he said that they try the injections first. I have joined groups on Facebook and there are a lot of posts to say that pcs is not a gynae problem and needs a vascular surgeon to treat via embolism, and for some people the injections made things worse 😩

Sorry for the rant!! I've found it's so difficult to get any info on pcs! Do you know when you'll get the results back from the scan?

You have plenty to rant about; I'm so sorry to hear you haven't started any treatment yet. Are they delaying hrt too? So your consultant is a gynaecologist, is that right? I'd agree that you need to see a vascular surgeon; is it possible to ask for a referral? I can imagine that may take some time, so you could try the injections in the meantime? I don't know anything about the injections (I'll go and google!). I'm hoping to have the scan results within about a week. I'm really fed up with it too; it affects so much of normal life. Rant away as much as you like if it helps!

Yes, he is a gynae. To be honest, I've only just found out recently that it's usually treated by a vascular surgeon! He didn't say anything about that.

The hrt is alongside the decapeptyl injections which will put me into the menopause. He seemed to think this will help as it's a hormone related issue? Hopefully I'll be able to speak to the consultant at the appointment and ask about a referral and see what he says. I can barely get hold of anyone! I'm going to leave it for another couple of weeks and then possibly go through PALS which I don't really want to do, but I have had issues since I was 5 months pregnant and baby is now 19 months old! My first appointment with the consultant was April 2023, so this has gone on long enough!

What does your pain feel like, if you don't mind me asking? Mine is lower back and lower stomach cramps, and it goes through my hips and right down my leg now. It makes my knee burn too. In the last few months I've had feelings of heaviness in my lower stomach and in my legs. It's mostly in my right had side.

Hi @rainbow616 , my pain is normally a dull, heavy pain in my pelvis. I sometimes get brief sharp pain too. It's all in my pelvis tho, not radiating like yours. Would your gp be the one to refer you, or can the consultant refer to another dept?

I’m a vascular surgeon. The coil Embolisation is actually done by an interventional radiologist and a vascular surgeon can make the referral.
The challenge is that some people can have refluxing pelvic veins with no symptoms so it is one of those hard to nail down diagnoses and there are many pelvic pain of unknown cause patients who are desperate to find a cause and will hang their hat on this.
It’s important to find an IR who does a lot of this work to be good at working out when the veins are really the problem. The gynae is helpful to exclude other causes.

Hi @olympicsrock this is so helpful, thank you! A vascular surgeon is going to do my embolisation (I'm not in the UK); is that unusual in your experience?

Hi all, I know this is a few months old but it came up on a search.

@somanylights and @rainbow616 how are you doing? I had an MRI scan (privately organised) in August to look into an ‘unusual’ fibroid I have. The results came back saying I have significant pelvic congestion. This has never been raised by my NHS gynae team (which spotted the fibroid). It’s not been painful that much so I’ve ignored it but this month it’s been really very bad.

the pain is left side, runs from the left side of my belly button down to groin (quite mild, dull deep ache, constant). I also get lower back and hip pain on and off and a bit of sciatica now. I’m getting a ‘bulging’ vein type thing on my left knee also. I know I have a varicose vein in my vulva area they told me that years ago but nothing else has been mentioned. It is currently constant, even when lying down etc (but quite mild). Bad when standing or sitting a while, better and less noticeable in a way when moving. Does this sound similar?

NHS want to give my a hysterectomy for the fibroid (I’m 42) which I’m not totally against but I don’t think it’s going to help the PCS and they just don’t mention it. I know I need private advise but not sure who to go to or where to start.

are there any online groups you’d recommend for info? Thank you

Hi @popsickle555 , oh goodness, I'm so sorry to hear you're suffering too atm. I presume in your case they're going to want to remove the fibroid first, to exclude that as a source of your pain? Have they discussed any alternatives to a hysterectomy? And can you ask for a referral to see a vascular surgeon? That's who you need to speak to about the PCS, and also it sounds like you may have leg varicose veins too, so perhaps you need a doppler to have them looked at?

Yes, the pain upon standing or sitting (as opposed to moving around) was the same for me. Standing still in the kitchen was the worst. I'm afraid I can't help with any online groups, but I can report that I had an embolisation back in October, and it's changed my life. The constant dragging and heavy, dull pain has completely gone. I'm not sure how to explain this, but I also feel more connected again with my abdominal region, like I can feel the muscles (I use that term loosely...!) working again. I still have bloating, but I think that's a perimenopause symptom.

Please do ask away if you have any questions. It's a miserable condition, and so poorly understood, but you are not alone!

Hi @somanylights i came across your post while searching for more information about the condition I have.
I was diagnosed with pelvic congestion syndrome within the first year after my daughter was born. Yes I agree it’s a horrible dragging dull ache in my pelvis, since it’s onset around 4 months ago it’s really negatively affected so many areas of my life.
I actually underwent the embolisation procedure today, I’m really hoping it helps. I see you had it done too, do you know roughly how long it took before you noticed if it worked?
I have a different pain across all of my pelvis since the procedure this morning, like crampy period pain, but my consultant said this is normal for a few days as the glue reacts and the faulty veins scar and seal over.
and is it ok to ask how are you now that some time has passed? I’m so desperate for this to work and to get some of my old life back
thank you so much 🙏

Hi, I’ve just come back on as I’ve seen that there is another post on this thread and I thought it might be good to update. I actually went ahead with the hysterectomy last year so around 12 months ago now this was primarily to remove a fibroid, but also I had endometriosis and lots of pelvic pain symptoms associated and probable pelvic congestion. I was terrified of having the hysterectomy and didn’t really want it but I can handsdown say I actually have almost no pain at all now. Everything is so much better on the pain front that I’m really glad I went ahead with it. I did keep my ovaries and have no associated ovulation pain anymore and generally feel from a pain perspective that life has improved dramatically! I’m still having some hormonal balance issues which I’m trying to sort out with HRT, however none of those caused pain so if anyone is wondering about surgery from my point of view it was a good option at the point I was at.