Following on from my posts here recently:

a HUGE thank you to ALL who have helped me GREATLY to process/interpret my flaring symptoms while my medics & I systematically took a 1 step @ a time approach to the typically complex chronic multisystem gastro + gyn + urology

+ rheumatology problem we've been getting our heads around since early October:

you are ANGELS & WIZARDS & my HEROS🌟🌟🌟🌟I cannot thank you enough πŸ€—πŸ˜‰

that 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 incrediblly good communication & listening skills! And a great local NHS networker: she can connect me with the right NHS gyn & gastro consultants...I have homework to do, and then I see this physio again in 2 weeks....and several more appts will follow: she is in for the long term. She also seems to have a very human heart...these were vvvv intimate subjects under discussion

I see the lady urology surgeon who referred me to this MAGICAL physio next month...I may just let myself hug her...

I am in a state of shock: how can I be this 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've been running successfully for years now (eyes, mouth, nose, spine, legs/feet, gyn, uro, etc etc) then I can do this specialist rehab. Well, time will tell...but this feels like a good beginning

And: HURRAH: the layman's diagnosis you've helped me to piece together seems to be spot on (sjogrens + SLE + EDH affecting viscera & peritoneum, + Rectocele & Cystocele).

+ AH HA: there appears to be at least 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....πŸ˜˜πŸ€

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  • Oh my goodness, that is so brilliant Coco. I couldn't be more pleased for you if I tried albeit a little bit envious at the same time! You go girl and get yourself sorted in the best possible way. πŸ‘πŸ‘πŸ‘πŸ‘πŸŒΊ 'M'

  • Thanks so much mabsie: I couldn't have got here without you! No doubt you've notice I tend to get a bit over excited...but this is a breakthrough I want to celebrate...who knows how things will actually go from here...but this is an extra specially good beginning...at the very least maybe things can be eased a bit....and I can avoid surgery. Will get back to you again after the next appt....wishing you all the best with everything you're managing πŸ€πŸ˜˜

  • That's wonderful news Coco, it proves we should keep pressing on for the help that Is out there. 🌻

  • You are so right! We've got to keep up the pressure...and keep learning about our health issues + how to work the flipping system...knowledge is power...solidarity is key to keeping our heads above water: we're stronger together, our forum is invaluable.

    how are you this morning, tt? Hope you're getting some decent sleep...when I was an inpatient last summer, the ward gave out the GREATEST ear plugs...when I got home I went online & bought a bunch...πŸ˜‰πŸ€—


  • TigerTea, yes, like Coco I'd like to know how YOU are doing in UCLH? It is brilliant that Coco is finally getting somewhere too. Best wishes to both of you.πŸ’ 'M'

  • Oh WOW - that all sounds so positive. I'm SO SO pleased to hear you've hit on a gem there with someone who knows how to help! EXCELLENT!

  • Ecstatic is THE word for how I feel, whatnextπŸ‘ŒπŸ‘Œ: but I do tend to over excitement at the least excuse....well, being sensible, this is at least positive breakthrough...these abdo prolapse problems are of looooooong standing going back 30 years to my early 30s & worsening (but undiagnosed formally) for decades despite my efforts to minimise them...while consultants & gps & my previous gyn/uro physios blanked my every mention of them...until finally the symptoms have got as severe as they are now...and my amazing urology surgeon personally refers me to this amazing physio...so, I decided: why not celebrate it right away...who knows what might happen next: we've got to seize the day, no? At the very least, hopefully she will help ease my symptoms and slow the growth of these prolapses....it's fantastic that you were here to respond to my question the other day: I can't thank you enough for helping me keep my act together this week as I prepped for this first appt...am wishing you all the best πŸ˜˜πŸ€

  • I know what you mean Barnclown - I'm the same. I think sometimes everything seems such a struggle and when suddenly it slots into place then it makes you want to celebrate (which I did by buying a nice piece of gateaux in Waitrose LOL!) I do think EDS gives us a lot to cope with in our lives and I don't know about you but that makes me emotionally vulnerable sometimes so when it all goes well I feel like literally putting the flags out LOL!

  • Well put: πŸ‘Definitely πŸ”ŠπŸ°πŸΎπŸŽŠπŸŽ‰πŸŽˆπŸ‡¬πŸ‡§πŸ’ƒ

    Uh oh: waitrose Gateaux & pastries...the almond croissant: my nemesis. The only time I let myself have my fav CHOC bar snickers) is on the way out of the hospital after clinic spots


  • Just try a piece of their white chocolate, raspberry and amaretto gateaux. Doesn't it do us good to have a treat:-))))

  • πŸ‘ŒπŸ‘ŒπŸ‘ŒπŸ‘ŒπŸ‘ŒπŸ˜˜

  • I'm pretty new here but well done for getting everything together with the specialists. I'm having a devil of a job. I have referrals in with Rheumy, Gastro, gynae, and urology but they're different consultants and some at different hospitals. It's great to hear of a success story.

  • That's v frustrating & demoralising....i vvvv much feel for you & all EDH patients who are treated this way...this is dreadful

    for what it's worth, I have a feeling the reason all my hospital clinics take me as seriously as they finally do now i'm in my early 60s is my DES inutero exposure + my infant onset lupus going with only emergency systemic treatment until 5 years ago (which means lupus inflammatory process has been able to affect my body all over...this was the cause of my 14 year old malignant tumour (of the connective tissue: collagen: chalked a chondrosarcoma) Drs thought was arthritis until they finally woke up & amputated)

    My GP tells me the reason I'm being so closely monitored is that I am at high risk of connective tissue cancers anywhere in my body. So I'm seen at least 1x per year at around 5 clinics + every 3-6 months at rheumatology & immunology clinics. i really don't know what to make of all this. i feel we are all deserving of real help from the system

    I very much hope your luck improves πŸ€πŸ€πŸ€πŸ€

  • you are very lucky to have found such a lady, I'm still looking

  • It's awful to be put in this position by the system...to me, this amounts to a type of negligence. I was in that sort of position most of my adult life & I became completely demoralised... i even pretty much gave up looking for help...but then it was thrust upon me...so, do keep on looking, never give up

    I only began to get really solid attention in my late 50s when the cumulative effects of my lupus-related multisystem conditions became so severe that I was highly debilitated with lots of chronic disabling symptoms.

    The reasons I'm getting more help generally are in my reply above to loopylou... and finally have been referred to this physio is that I've been seen regularly in clinics for chronic gyn & urological problems throughout the past 10 +years. As a result, the consultants were, I think, in the position of simply having to send me to a gyn/uro physio. I have been referred to other gyn/.uro depts over the years, and received decent assistance, but this time my feeling is I've finally met up with a very unusually good physio...fingers crossed

    Am wishing you every possible ounce of good luck...hoping you get some real help ASAP


  • I'm 43 and was diagnosed aged 40 after years of being told it was all in my head. Annoyingly now I know what the condition is it has been obvious since childhood. I don't have the issues you have but as you say even lesser issues are can be deemed as negligence especially as if it had had some sort of early treatment it may not have been as debilitating for many of us.

    My bladder issues for instance have been there since childhood and I've learnt that withholding fluid meant that I'd still pee a lot but not as much as if I drank the expected quantity. Now I'm being believed they found my bladder is always in retention, so I only ever take the top off when I go, I have a mid urethral stricture which needs surgery, and the splinter valve closes too soon so stops releasing. Gastro have had me swallowing capsules and I have an X-ray on Monday to see where they are in the system. I've been on all sorts of concoctions since childhood to get the bowel functioning. Gynae issues due to heavy periods since they started left me anaemic and after the fast labours and major bleeding issues there they shoved me on a pill to stop them. I've since found out that progesterone only pills make the joints more lax. Physio won't touch me as my pelvis is too unstable.

    They can't find medications that work so have given up and have told me to manage it mentally. That is so very hard and I hate the thought of this daily for the rest if my life.

    Local anaesthetic, cortisone injections, even diabetic medication doesn't work. It's soooooo frustrating.

    I guess that's why I'm fighting to be heard. It's just a shame that no one is willing to take notice.

    I walked into my Urologist appointment on crutches, it's the only way I can keep upright, and he said you've got no other difficulties other than the bladder? I had fun putting him right. I just hope that he takes the EDS, Fibro, Osteoarthritis, etc. into consideration with the surgeries.

    I'm so sorry if too much info. My hubby has gone to bed, and teenagers as usual are on their consoles, so my mind has run away with me as has my typing. Xx

  • Never too much info here: this is THE right place to get every detail off our chests. πŸ‘πŸ‘πŸŒŸ

    And the detail of your harrowing story is very very important...and I think you're absolutely right to have fun putting consultants right in detail. ...we've got as get all the FUN we can during this outrageous life of multisystem debilitation & self important medics who blank us!

    I wish none of this was happening to any of us...but, it is...so here we are, sharing our experiences...knowledge & solidarity are power...thank goodness for this forum (I spend most of my time on the lupus uk forum, where there are some EDH people...which is really great...but i do find a certain depth of understanding here on this EDH forum....maybe it's partly because we've all been born with this predisposition to multisystem debilitation....I was born with EDH and also diagnosed as a toddler with infant onset lupus + now we know I have early onset Immunodeficiencies running along side all that (hypogammaglobulinaemia + lymphopenia)). My mother kept the lupus diagnosis secret, so when I moved to the uk, the NHS had no idea...and proceeded not to spot that lupus & EDG were underlying my continual health probs...yes, the NHS handled my emergencies well enough to get me "stabilised" each time...but the system barely slowed the rate of my downward spiral...until I bumped into a brilliant rheumatologist 5 years ago...now, at 62, her treatment is helping me feel batter than I have since my 20s

    What a life. I'm glad you're here loopylou...and I wish you all the best

    πŸ˜˜πŸ€ coco

  • Hi loopylou

    It is unfortunately a story told far too often yet still the doctors are slow to sit up and take note.

    I was told hypermobile at a young age and given all the wrong advice including the you are lucky it's so good to be flexible.

    40 years on with all the complications Eds can throw at me plus the kids having it from moderate to severe.

    I have had single gastro,gynae and urology appts over many years but finally got a referral to specialist deot in all associated so hoping to get some results as opposed to the hmm,erm not sure maybe responses from previous doctors.

    I still have to give my docs a verbal kick reminder regarding drug reactions and the uselessnessvof local anaesthetic on Eds.

    Keep up the fighting you will get heard eventually.Sometimes it's just shouting in the right place at right time.I lost it ,politely,at a local hospital a good few years ago after getting no where just as a visiting professor was walking through.Binho ! He heard my polite protestations regarding my symptoms geing ignirsd ,took me into room with a rheumy and i came out an hour later with a plan of tests physio and referrals which covered a lot of my problems.

    Take care and keep in touch.


  • Well put, effie πŸ‘πŸ‘ŒπŸ‘...your words perfectly underline and exemplify what I was trying to say in my reply to loopylou, above...and I'm so glad you're finally getting some in depth attention from the system🌟🌟🌟 It's a triumph that you can have a positive attitude despite such a long drawn out ordeal involving such extreme problems...here we are: proof that there are medics out there...and we can bump into them if we just hang in there πŸ€πŸ€πŸ€πŸ€πŸ€

  • Thank you so much for your responses and welcoming me too. My Husband told me this is a good forum so I'm pleased I finally got onto it. I will keep fighting but even at diagnosis I was told there's nothing more we can do for you. That was tough to hear but there's got to be more to this life. If they can't help me I know I'll do my best to try to make sure there's more to support others especially at diagnosis. It's also surprising how much more complicated it is when other bodily systems mess up. My hope is to get to the Hypermobility clinic at UCLH as that's where I think I may get some positive support. There's got to be that hope somewhere. X

  • Go for it: how far have you gotten re the UCLH forum?

    Yes, it's a sorry state of affairs, but you & I are in vvvvv good company! all my adult life I've been regularly told 'there is nothing any dr can do to help you, so make the best of things. I feel very sorry for patients like you'. Etc...and I keep meeting others on this forum & my lupus forum who have been told this too...and I do still feel sorely tempted to present myself to those paltry, lazy, egotistical medics so they can see that something could be flippin done & I'm the living proof!

    We're living in an era when medical research is paying off with many specialist medics keen to find so-called hopeless cases to try promising new approaches (like my new gyn/uro/gastro physio)...or even to try old fashioned long forgotten & discarded techniques (at the end of my tether, having spent 7 years being told to stay in a wheelchair, I crossed the country on referral from my long-time pain consultant to see a leading uk prof ortho surgeon CRPS expert who has led the uk in cutting edge techniques...this delightful man figured out the missing piece in the diagnostic puzzle of my CRPS and prescribed a very old fashioned type of physio rehab...it was arduous & time consuming + I'm still at it several years on...but I'm walking & standing and have only a tiny bit of intermittent pain in that sad foot now)

    Please do keep us posted here loopylou

    XO πŸ€πŸ€πŸ€πŸ€πŸ‘

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