Could Pelvic Congestion Syndrome be related to APS

[Karen56]

I have been diagnosed with both. GYN has referred me to a vein specialist. Will see him in 2 weeks. Not covered by Ins. Anthem of Colorado (USA) I would like to have any information on a possible connection to educate myself first It was seen on an MRI for pelvic pain

[MaryF Administrator]

I am pretty sure you are not the only one who has had this on this forum. contemporaryobgyn.modernmed...

It is important that you see a specialist who understands Hughes Syndrome/APS.

MaryF

[KellyInTexas Administrator]

Oh yes. Major problems. Led to massive surgery. The root was connective tissue disease , so lots of prolapsing.

I had not yet been diagnosed with APS, but horribly symptomatic with it. Surgury was three years ago to the week.

I had, all in one surgery:

Rectocele

Enterocele

Cystocele

Hysterectomy

My surgeon said my tissue was like cotton candy, or “ wet toilet paper- she had to move muscles to stitch to, viscera was not holding up.

I think it’s the connective tissue part that’s causing the congestion. The weight. . I had a tortuous vessel- but she retrospectily ( post APS diagnosis) did not It think It was clotting . She said that’s not uncommon with the trauma I had endured with the other OBGYN issues I had encountered due to my APS - multiple miscarriages, ectopic pregnancy with rupture( massive emergency surgury and a follow up surgury...) etc...and the main reason for the prolapse / pelvic floor congestion was a VERY heavy uterus full of fibroid tumors. Really really full.

Bad luck all the way around in my case. So I can’t say I had “ clots” exclusively. But yes. At the end of the day- APS related - absolutely. Really look at connective tissue issues contributing to prolapse.

I’m currently spitting three of my permanent stitches at the vaginal cuff- the turquoise ones. Coming out whole. My OBGYN has never seen this- she said the tissue is just not sound. Your OBGYN needs to know this.

I’m sure my surgeon would not mind talking to your surgeon.

[KellyInTexas Administrator in reply to KellyInTexas]

I just read Mary’s link - that sounds exactly spot on- exactly fits the bill. My diagnosis was pelvic congestion. I just happen to have the fibroids in uterus also- but a whopper of an APS case also. I did NOT do well after surgury at all. Of course I know know I was clotting .

[leakeadea in reply to KellyInTexas]

KellyInTexas,

I have a question for you now. Can you tell me what tests they carried out in order to confirm your pelvic congestion?

I just found out I have incompetent veins in my legs, when I had a special kind of ultrasound however they couldn't image where my acute pain is in my lower abdomen due to the bowel being in the way.

I've been in acute abdominal pain since 2015, all gastro reasons for it were ruled out but I did discover that I have a badly prolapsed womb, courtesy of my EDS weak connective tissues.

Ive been saying for ages that I believe I have varicose veins in my abdomen but I haven't had a test yet that shows them. I have been climbing the walls today with acute abdominal, leg and back pain and I have been living with this acute pain in my abdomen for two years now!

Thanks so much, Claire

[KellyInTexas Administrator in reply to leakeadea]

Pelvic congestion was diagnosed by my Obgyn by what she was seeing ( plus 3 prolapse , do you understand?) and the heaviness. Relieved by laying down. Also, upon exam the intestines were herniating through vaginal wall.

The heaviness was quite obvious. Also, I’m a very tiny build so pregnancies were a lot for me. I’m only 5’3” and I was 99 pounds at each pregnancy onset. I’m only 110 pounds now. This doesn’t help having a small, compact frame.

The torturous vessel in ( uterus?) was seen in a scan of some kind. A CT scan maybe? I can’t remember. A vaginal ultra sound was also done to look at fibrous cysts in uterus. The became a danger because the blood supply to them changed somehow... she said this happened 1 in 20 times when the Fiberous tumors got too big. The tumors out stripped their blood supply capabilities.

She just said all this was pelvic congestion. It suddenly went to surgury when the blood supply to fibroid tumors became compromised and fluids built up in uterus. This was detected by trans vag ultrasound. Symptoms were acute onset pain. It was definitely OBGYN- you cannot be mistaken about it, I would not think.

I am however, concerned about the gastro symptoms. This has been one of of my most challenging areas. Luckily, I finally have it resolved! I believe through the fields of neurology and gastroenterologist and Hematology .

I’m now 48.5 years old. This started at age 27.

Firstly- let me suggest to you Professor Hughes book, Highways and Byways. It will help you. Each patient is so different, as Ross wisely reminds us. You may see similarities in our stories, but likely many differences. I find this book , particularly the table of contents , almost reads as an outline of my personal history.

Liver, Gastro tract, are all interconnected.

* professor states the “ end organs” - delicate organs- are particularly vulnerable- where there are nerves

* many neurons are in bowels

* brain / bowel connection must work well for parastalasys

* I started with horrible nausea/ bowels shut down / ileus/ shown on x Ray / heard via stethoscope. ( high pitched- sing song )

* gall bladder failure/ no stones- surgury

* chronic appendicitis - surgury-

* doctors even noted it seemed like mesenteric ischemia-

* was diagnosed only 11 months ago. Retrospective they say micro clots to bowels. ( vascular congestion to bowels. Says my gastro doc. - heme says tiny capillaries to nerves also clotting- causing spasms- )

Prior to APS diagnosis my gastro doc put me on Methscopolomine bromide

2.5 mg am and 5.0 mg pm to help smooth muscle cells of gut communicate with brain. Takes three weeks to titration up. Really helped! Too much can cause ileus.. so. I’ve had no problems. Also- after that it was discovered I had seizures. Micro clots in right temp lobe.

At any rate- worth looking into. I was well on the Pamine Forte ( Methscopolomine Bromide) almost a year before seizure diagnosis. I’m still on it- helps me tremendously. I can take 5mg am also if I need, but I take as little as possible since it’s strong.

Look at the other reasons dr Hughes puts forth as common causes for nausea with Hughes Syndrome. Investigate all avenues.

That’s just my story. But it’s not terribly unusual.

[leakeadea in reply to KellyInTexas]

Gosh you have been through so much! I never had children as I was told I would be high risk due to my EDS and clotting. We do seem to have experienced a few similar things though.

I had appendicitis too, that came out.

I also have a terrible time with my digestive system but that's very common in EDS.

My abdomen pain went acute after my bowels shut down on Christmas day 2015. I was in acute pain, sweating from my head all day, then in the night felt violently sick and vomited 15+ times, losing consciousness between each bout of sickness. My GP sent an ambulance three days later, as I was still in a acute pain and unable to eat anything because he thought I had a bowel blockage, which is extremely serious apparently. Turned out that my bowels had just stopped working and so everything just backed up.

For the past 22 months I have been telling all the doctors ive seen, the neuro-gastroenterologist, regular gastroenterologist, the gynae, cardiologist, respiratory doctor and the haematologists, that I'm certain my abdomen pain is due to compromised blood flow, exacerbated by my IVC Filter but they just took and are still taking no notice, it's beyond frustrating!

I will definitely check out the book, thanks for the tip, Claire

[KellyInTexas Administrator in reply to leakeadea]

Yes! Non mechanical paralytic ileus! Bowels shutting down. Gastro paresis. ( it is HORRIBLE...)Exactly what I was having. The thinkingbis now its micro clotting to bowels due to APS. More specifically perhaps also to the tiny capillaries supplying the nerves that are responsible for making the muscles of the intestines move rhythmically to keep food moving through.

We are twins here in this regard. This is what I was suspecting.

[KellyInTexas Administrator in reply to KellyInTexas]

We did manage two children. Had specialists (genetic counseling just to see if something was amiss) involved- couldn’t figure out why on earth we kept aborting them. ( now we know!)

You just never know what life is going to throw at you. ( and just when you think you can catch the next curve ball, you loose your 3D ability and 35% of your darn vision! )

I have a wiley teen aged son. I’ll just send him your way for a while. No, wait. He just flagged with this disease. You don’t want him! ( He’s pretty great actually! I’ve about decided we may keep him after all😉) ! He’s finally less messy than the dog!

[leakeadea in reply to KellyInTexas]

We do seem to be twins in so many aspects. Yes don't give up your son, not now he's better house trained than the dog😉!

[KellyInTexas Administrator in reply to leakeadea]

So sorry. It’s miserable. I’m hoping warfarin will help more than the eloquis. If not, please share my info with a very good gastro doc. I think you need a sub specialization of neurogastroenterology.

Does this exist in London?

I’ve not had this, because I have a good gastro who totally gets that there is a second brain in the gut. He has warned me some gastro don’t believe in it.

Do you have a good neurologist? I believe, again, perhaps Paul Holmes might be your man. London.

[leakeadea in reply to KellyInTexas]

Believe it or not,I was actually under Professor Aziz a Neuro gastroenterologist at Barts Hospital London last year but after all the tests I had under a local gastro, (CT scan, gastroscopy, small bowel MRI), they simply concluded that my abdomen pain must be nerve pain due to my EDS.

The joke is that my CT scan in February last year clearly showed that my IVC Filter is tilted and had pierced through my IVC vein, yet it was not mentioned in the CT results.

They wanted me to try Topiramate for my pain but the pain clinic doctor said to wait till I know what's causing my high heart rates and breathlessness before starting it.

I'm forever left with question marks, never a diagnosis.😕

[KellyInTexas Administrator in reply to leakeadea]

Have you had an EEG, just for the sake of ruling out post ictal GI manifestations? ( not that those cause ileus. But sometimes symptoms get tangled up with so many comirbidities. I’m having this trouble. The seizures and auras can act a lot like APS neuro manifestations. And it’s not too terribly uncommon to have micro clots caution little partial complex seizures with APS. Those can mess with gastro system.

Get this filter resolved.

Then I would consider speaking to a Neuro about this . ( ahem... maybe Paul Holmes? Hmmm.? Maybe? He’s an APS specialty Neurologist and would likely be helpful- but only if you have some neuro involvement. Did you not mention you’ve had TIA’s? How about migraines? Livedo? Any tingling anywhere of limbs or face? ( I don’t know interplay of EDS here . )

I’m on topirimate. 300mg daily. When migraines hit I was moved to this one from Vimpat.

I know nothing of EDS except I have a friend with it. I’m not sure which type- I studied it when she was diagnosed- I know they revamped the classification system. It’s complicated! I’m hoping the Methscopolomine bromide ( pamine forte) could Work for your ileus but with EDS I’m leery.

I see my gastro this Thursday. I’m going to ask him about this but I’m sure he will not know. He finds dysautonomia ( what we are experiencing) very interesting. He was with me before diagnosis and after diagnosis of APS. He’s seen the entire process unfold.

[leakeadea in reply to KellyInTexas]

Hi Kelly, I've not had an EEG since 2007 and that showed I had an tendency towards epilepsy.

I looked up your Dr Holmes and I will definitely contact his secretary, if I get no joy from Professor Garrard, the neurologist who consulted on my head MRI in 2007. I'm emailing my results to him and asking for his opinion.

Yes TIAs in 2007, 2008 and last year. I've had migraines, vertigo and vision disturbances in the past, even before my first clotting episode. Had the same symptoms prior to TIAs last year and I'm still having acute head pain to one side, which then leads to blurred vision, vertigo, stumbling etc for several hours and even days after the acute head pain.

I took photos of the funny looking veins on my legs, which I now realise could be livedo and last year along with my other TIA symptoms, I also had tingling, pins and needless and numbness to hands legs lips etc.

Dysautonomia is very common in EDS and if taking the IVC Filter out doesn't resolve m breathlessness and high heart rates, then my cardio doctor will refer me for autonomic dysfunction tests. I've been tested for POTS and Autonomic Dysfunction in the past and it was negative but its possible that may have changed.

I would be grateful if you ask your gastro about this, as my gastro didn't know much about that side of things.

Thanks so much for all your help, advice and support. Claire😀

[KellyInTexas Administrator in reply to leakeadea]

Well, it does seem this original post took an entirely different turn, and my apologies to Karen. It did lead to an important dialogue! So thank you for your patience with this.

Claire, Why don’t you, out of courtesy, post a new question right now , so we quit highjacking Karen’s original question, titled who can provide useful insight on POTS/ Dysautonomia / ischemia Bowel/ and APS?

Just so you know, I tested negative initially in 2009 maybe via tilt table testing for POTS but tested positive in April. I also have a gait balance disorder that comes and goes but it’s always just below the surface...

thanks to everyone reading this with us. I hope it’s helped you, too!

[lupus-support1 Administrator]

PCS is a condition associated with varicose veins in the pelvis.

f1000research.com/articles/...

my.clevelandclinic.org/depa...

stoptheclot.org/article244.htm

IMHO, you need to ask your own doctor these very important questions because this is not about associations, but rather what is causing your condition.

With good wishes,

Ros

[KellyInTexas Administrator]

Oh, I agree. Of course. Surgeons consult with each other all the time in these situations.

I only meant that I was not at all normal to work with “ tissue wise”. It’s nice for a surgeon not to have surprises when they get in- if it even goes that far.

The surgeon needs plan b, and c. As a patient it’s not nice to wake up in ICU.

[KellyInTexas Administrator in reply to KellyInTexas]

I did have vericose veins in my pelvis. I was told it was also about associations. Perhaps my physicians and surgeons are all wrong.

[KellyInTexas Administrator in reply to KellyInTexas]

Ros, I’m printing off these reports for my OBGYN surgeon. Mary’s also. She can be on the look out now. I do think she had it wrong. But now the specialists of APS are telling me, and she ( the OBGYN surgeon is telling me) the associated connective tissue disease with APS ( as as Prof Khamastra says APS is an atypical connective tissue disease) it is a contributing factor to prolapse- the support systems don’t bear the additional congestion weight well.

As I said- my doctors may have it all wrong. We are shy here specialists. But we are going by what we actually SAW happen inside of my body. That’s very important. And... what’s actually happening RIGHT now. And comparing that with what we know to be true so far about APS and associated connective tissue disease.

That’s important data, although may be anecdotal if not a large enough sample size. Not sure what control studies are being done where.

[leakeadea]

Dear Karen 56, apologies if I hijacked your question it wasn't my intention. I begun following your question because like you I have undiagnosed pelvic pain. I truly hope that your vascular doctor can help you.

I recently posted a question myself and I have to confess that I'm getting a bit mixed up as to which question thread I'm responding to, so apologies again.

Claire ☺

[KellyInTexas Administrator in reply to leakeadea]

No , Claire, I did! I diverted it by asking about your nausea! It was my fault ❤️! I just didn’t realize how similar we were actually going to be. Anyway...

[Karen56 in reply to leakeadea]

My appt is next Fri. It makes me nervous that they are not covered by Ins. What's a girl to do?

[leakeadea in reply to Karen56]

Karen56, I'm so sorry you have all the extra stress of your insurance not covering you. I'm in the UK and so treated by the NHS, there's no insurance to worry about but the care is not that good a lot of the time. I've had acute abdominal pain since the middle of 2015 and still don't have a definitive diagnosis. I'm supposed to be having an operation which may help with my pain but just found out that I've been put on the "routine" waiting list, not the urgent list. I've been experiencing acute to excruciating pain for over two years and yet I'm considered routine?!😞

The links that Ros posted are very informative, so make sure you take that information with you to your vascular doctors appointment. Do please update us afterwards, I know that there are definitely things that can be done to easy the pain of pelvic congestion. Claire ☺