Hello again all 👋👋👋!....so, following on from my 2 recent posts & the great discussions they got going (👏👏👏 many thanks) i'm continuing to prep for my gyn/urology physio appt this week. This appt is on referral by my surgeon urologist this time - continuing investigations into 5 months of flaring severe internal abdominal pain (quite new & different to the chronic lower GI symptoms I've been managing very successfully all my life...I won't go into detail now because there is lots in those 2 previous posts)
today I reviewed my files from previous gyn/urology physio sessions in 2009 & 20012....in there I found i'd been given an excellent NHS pelvic floor advice leaflet that includes diagrams & info on several types of abdominal/gyn/uro prolapse....which has now got me thinking: could some sort of "visceral" condition/prolapse be the source of these severe pain flares?
So, I got out my official bibles: Wallace's Lupus & Sjogrens books + 'Hypermobility, Fibromyalgia and Chronic Pain' by Hakim, Keer & Grahame (Churchill Livinstone Elsevier, 2010) and found excellent sections re bowel dysfunction, visceral disorders (inc prolapses) etc
I already have had at least 1 prolapse (an ehlers danlos hypermobility type anal prolapse involving severe early onset piles - requiring NHS full-on haemorrhoidectomy when I was only in my early 30s (not due to constipation or any other normal cause)), so now I'm curious what sort of investigations it would be reasonable to request from the NHS...I recently had a full abdominal/thoracic ultrasound scan which found nothing sinister...my feeling is that ultrasound scanning isn't the most refined and effective type of imaging available, so what about MRI? Or even laparoscopy?
If anyone here has experience of of internal organ prolapse in the lower abdomen/pelvis (be this prolapse to gyn, or urinary tract, or lower GI organs) I'd be very glad to learn about your symptoms, investigations & treatment...am guessing that at 62, with EDH + infant onset SLE & early onset sjogrens, some sort of visceral prolapse is a distinct possibility (especially as I have 'history' of early onset visceral prolapse).
🍀 Coco
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Barnclown
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These days, ultrasound done by a well trained technologist is pretty good for a lot of things - and has the advantage of being dynamic. It's horses for courses:
Many thanks...will look at this link now...and just mention: Yes, I do have respect for the NHS ultrasound which was v thorough, but this NHS leaflet I found in my file outlines prolapses which apparently aren't easy to distinguish via ultrasound....laparoscopy is one method of investigating...but of course I'd rather an MRI if it can do the job...
Didn't think you didn't - I've no doubt a lot is to do with the number of patients you can get through. I'd think it is used as a starting point. Did you not have transvaginal U/S as well?
Yes indeed: the magic wand was inserted with great discretion and spent plenty of time exploring from various angles (but never did find my ovaries...thanks to early menopause + DES daughter reproductive organ birth defects they've probably disappeared altogether by now anyway)
I was just wondering on the successfulness of ultrasound on those with hypermobility .As you know my last u/s of abdo was a bit of a hoot as they had to play chase the organs and doc said probably need other scans to get a clear picture.
I had a full pelvic ,with wand includedin the package,a few years ago and the very experienced woman doing it said she struggled to see clearly as soon as she pressed to get good image off it all would go sliding about.
I had ,not bragging here,incredible muscle strength and tone earlier in life having been told to workout to the max as being hypermobile is great so became so fit to be a trapeze flyer catching others.This was of course the most stupid advice and although giving me an ok figure for awhile and a lot of fun It has done no end of harm to joints and tendons.Since illness really bit me in the butt,well all over really, being unable to exercise has had a knock on effect on losing most muscle tone I think has exacerbated the abdominal and all thing inward and icky problems.I now feel simiar to barnclown in the it is all collapsing on to and crushing everything ekse feeling which I presume would then lead to prolapses.
I am still trying to work out which issue comes from which condition or is it a combination of them.
Just as I think that a symptom must be say Eds someone on here will mention it as a lupus thing or both and so on goes the question "who shall I see for help with this?"
It really helps me a lot when a post comes up and a lot of folk reply with different experiences or suggestions even if one little thing as it adds to the bigger picture of what lupus and associated conditions do which others can then relate to or add to.
So thanks barnclown for this post as I have similar problems and questions needing help and advice bout.
Ps.was there any mention of difficulty getting u/s images due to extra movement due to hypermobility at your scan?
PLLLLLLEASE: I THRRRRIVE on detail....no apologies ever: GRRREAT reply, effie👏👏👏👏
The answer is YESYESYES: she was a study: her furrowed brow as she prodded about & her fingers went clickity clack & she muttered under her breath (sounded like: dagnabbit...or something etc etc). She said it was like a scavenger hunt...
Yes: I can so relate to your description of being encouraged to workout when younger: long distance biking...professional gardening...mountain climbing...and in between the skin reactivity, infections, catastrophic fatigue, ulcers & lesions, numbness, whatever's...but you're so young and full of dreams that you get up & try again...until you just can't keep the Everready Bunny thing going
Yes: Today I felt like so many pieces of the puzzle were beginning to finally marry up into a recognisable image: what's up with my abdomen/thorax NOW...AND THEN I recalled the incredible feeling of finally figuring out the missing piece in the puzzle of the CRPS my feet...: this took 7 years of fighting fighting to force the system to help me figure the puzzle out...while the feet got worse & worse: couldn't stand on them, couldn't walk much and not at all without a cane....ok, luckily wheelchairs only when desperate (instead just stayed home). Now I can stand & walk agogo...my meds even give me enough stamina & resilience for proper little hour long hikes in the fells...I never thought I'd do that again! So, that memory is driving me on....I will crack this 'complex' abdo thing....I will! even at 62 I'm still up for this battle...partly because the BUZZ of winning through despite the drag the system puts on me
Well, THANK GOODNESS for all of you here: without the internet, without you...I know I couldn't hack this...we're all doing this together, which does make us stronger🤗
Effie: PMR's link is invaluable prep for arguing our case for the right imaging...hope you get a chance to look it over..take heart effie...piece by piece, you'll get there
Time for bed: am so glad to read your wonderful reply before 💤💤💤💤💤
I've had some great replies to a similar question posted on the healthunlocked Ehlers-Danlos Support UK forum. It's looking as if the diagnostic puzzle relating to this particular flare of my complex persistent Abdominal/pelvic condition is v likely to include amongst its pieces:
Rectocele: also called posterior prolapse, occurs when the thin wall of fibrous tissue (fascia) that separates the rectum from the vagina weakens, allowing the vaginal wall to bulge. it's the front wall of the rectum that bulges into the vagina.
&/or
Cystocele: also called a prolapsed or dropped bladder, is the bulging or dropping of the bladder into the vagina.
So, it's good I'm seeing the gyn/urology physio tomorrow...and urology in March & gyn in early May. Meanwhile I'll touch base with my GP...maybe we'll get some of these appts brought forward. Then I see rheumatology in March, and meanwhile I hope to organise a gastroenterology appt. all these clinics are involved in this puzzle. No wonder I'm given the "complex patient" label at my GP surgery 😉
but I already know that any possible prolapse IS definitely exacerbating my chronic persistent & flaring Lower GI issues, so they'll need to be looked at too
Hi Coco I am an OB/GYN nurse so this is right up my alley. Ive been working in this field for about 25 years. Problem with pelvic pain is you have so many organs in your pelvis your bladder, ureters your bowel, your uterus ovaries and tubes. It's sometimes very difficult to pinpoint where exactly the pain is coming from. Ultrasound is definitely the preferred method of looking at your female organs, but MRI is better at looking at the bowel. One question do you have a uterine prolapse? If your uterus prolapse is down or if you've had a hysterectomy, then the other organs can fall as well. When they go in with laparoscope, They can directly see everything and that is probably the best way of diagnosing most abnormalities. I honestly don't know much about the hypermobility problem that you have though. It sounds like it's quite complex. Is there a physician at a university that you could go see that specializes in this type of thing? Here we have mayo clinic, John's Hopkins, And Cleveland clinic, as well as other university centers that have physicians that just specialize in that one particular thing. I will be following this with interest to see how it all turns out for you. Hugs,
Oh nanleigh: thanks so much...will definitely get back to you after my appt tomorrow...will go to this appt feeling all the braver thanks to your thoughtfulness!!!!! Goodnight 😘🍀
You wouldn't want to know my story, but yes, have suffered prolapses bladder, bowel and surgery that messed me up further, so try to do it with diet and natural approaches now.
Am sorry about the mess up, cann. But it's v good to know I should be wary...especially at my age with such complex multisystem probs. So am v grateful to you for your reply...am off to that apt now...crossing my fingers
I wish you the same, Barnclown - life is a journey and everyone is different, so whilst being wary, we must keep an open mind and go by what feels right for us. X
FIRST OFF: a HUGE thank you to ALL who have helped me GREATLY since early October while my medics & I systematically took the 1 step @ a time approach to this typically complicated chronic multisystem problem of mine: you are ANGELS & WIZARDS & my HEROS🌟🌟🌟🌟I cannot thank you enough 🤗😉
the NHS specialist gyn/urology/gastro physio appt this afternoon went brilliantly: she is the stuff of dreams: EXACTLY what's needed AND I know we can work together...a highly experienced young woman with incredible good communication & listening skills! And a great local NHS networker: she can connect me with the right NHS gyn & gastro consultants...I am in a state of shock: how can I be so lucky...after such a lifetime of truly madly deeply dodgy luck? There is a lot of rehab to be done, but she says that if I can maintain the other multisystem rehab regimes I'm running (eyes, mouth, nose, legs/feet, gyn, uro, etc etc) then I can do this rehab. My self diagnosis turns out to be spot on (sjogrens + SLE + EDH affecting viscera & peritoneum, + Rectocele & Cystocele)...+ One wild card (a condition in my small intestine I'd never heard of: more about that another time)
Enough for now...just to let you know a bit...just to say thanks....am now going to post a slightly longer thank you too 😘🍀
I had a bowel prolapse ten years ago, I suffered a long time with it, and thought I can't go on like this, some days I could barely walk. So got operation and I've never looked back, happy. Does lupus cause weakness in those areas, I also have hernia on my abdomen which needs sorting, but keep taking cold feet ,scared.
Hello Molly. Am v much feeling for you. These things are scary. Are you able to talk to someone amongst your medical team about your fears? I hope so...even maybe your GP practice nurse or specialist lupus nurse? I'm thinking of someone who knows your medical history & current treatment plans.
My impression is that these prolapses are not commonly caused simply by lupus. e.g. In my case, my medics are indicating my prolapses are mainly due to my ehlers danlos hypermobility, which affects connective tissues. But, as I understand it, the reasons for prolapses depend on the overall health of each individual
If your bowel prolapse was anything like mine, I can relate to how much suffering it caused. Walking was hard for me too, especially when the prolapse was inflamed/flaring...and in my final year that was a lot of the time. It was absolutely agonising. I as in my early 30s, and, as in your case, the operation to correct my prolapse went well.
Because your bowel op went well, I would like to think that a hernia op would go well for you too - that was 10 years ago. How old are you now & is your health still as relatively good as it was 10 years ago? This is the kind of thing I'd be discussing with someone in my medical team if I were considering another op....whether or not I was feeling scared. I feel certain your team will realise how vital it is that you feel informed & reasonably confident about any treatment they are considering
Hi Barnclown, I'm 52 years old, I'm not to bad just now apart from the usual aches, fatigue. I got my hernia scan 2 weeks ago, and I've still not went to doctors to see what happens next. ( I'm delaying ) family says get it done. I must tell Dr. I'm scared. Silly huh. Thank you for your post. X
I'd feel scared too...so if that means being silly, OK! These procedures are scary for us. On the other hand, often these procedures are necessary. You & I both know this. So, please do talk to your medical team: explain how scared you are and try to tell them why you're scared. Their professional lives are full of scared patients, so they'll understand. And I hope their response will reassure you, helping you make your decision to proceed or not to proceed. Nothing in our treatments is without risk. Our choices usually involve a risk-benefit appraisal. This is one more example. Am wishing you all the very best with this Molly. Good luck...keep us posted 👍👏👌🍀
Glad to hear you've scored big on the physio front! 😀👼🏼⭐️
I just wanted to say that in my experience u/s has been unreliable. I had a few years of what seemed liked constant u/s scans with an outcome I thought was reasonable only to have a MRI for my back some while later which revealed a problem in the uterus. Good, one might imagine as I then got to go back on the merry go round for further treatment but it just showed me that MRI and laparoscopy were better tools. 🔮👍🏼😜🌻
Many thanks BB! 👍💃👏👏👏👏🌟🌟🌟🌟 Yours is the voice of experience I've hoped would support the research report link our PMRpro gives me at the top of this thread (it's a relatively resent published paper comparing the diagnostic effectiveness of the main imaging techniques being used to investigate abdominal symptoms). Am ultra glad you've replied 😘🍀
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