I have actually got UCTD but worsening features of Limited Systemic Sclerosis in my gut. A couple of years ago I developed the features of SIBO (since confirmed), weight loss, urine retention and had a prolapse. The awful gut symptoms were the first. I’d suffered from constipation slow transit and reflux for years but a period of stress followed by pushing myself for a family event led to everything getting worse. I was fitted with a pessary which meant I could at least walk etc, had to start intermittent self catheterisation and the Royal Free diagnosed SIBO and I have antibiotics for that. My question is this have any of you with Scleroderma had a prolapse operation? I was offered this by the local Urogynaecologist at first but Professor Denton advised me to avoid surgery unless I have to. Since I’ve told the urogynaecologist about the Sclerderma symptoms they don’t want to touch me!
My question is if any of you have similar experience? I really do not want to carry on with this self catheterisation unless I have to. Also I’m sure it slows my whole digestion down more. I am worried about how thin I am though with recovery and the risk of COVID in a hospital but wouldn’t mind getting the ball rolling for next year.
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Hi,I dont have a prolapsed uterus but do have a prolapsed rectum. I am having it operated on 11th August hopefully but had the same operation 6 years ago and it only lasted one year. Dr thinks it is probably the scleroderma that makes it come back. I dont know if that would apply to uterus but it just doesn’t seem straightforward.
I’m sure the self catheterisation must be miserable for you just as bowel irrigation is not pleasant for me. This is such a complicated disease.
Hi Blueberry, thank you so much for your reply. It’s interesting you have had a prolapse operation which presumably went ok but sorry to hear it didn’t last. I wonder if it might be better if talk to Professor Denton’s team at my next rheumatology appointment rather than my local Urogynaecologist. The urogynaecologist did say it can make it worse which is a bit off putting! Very difficult to know what to do. They can’t really be certain it is related to Scleroderma but perhaps that’s wishful thinking on my part. Sorry to hear about your bowel too. Good luck with your op and I do hope it lasts longer this time.
Hello, I do not have as dramatic symptoms as you, what a combination you have, so pleased you have the SIBO organised. I had a uterine prolapse which got steadily worse during 2019 and 2020, tried a number of pessaries with no luck. In February 2021 took a deep breath and had a colpocleisis due to my frail health and age 69. It did work well for a year then failed. The surgeon said it was quite likely due to Scleroderma. 2 weeks ago I had a laparoscopic sacral colpopexy with mesh, a big decision. The surgeon said there was no alternative. I hated my poor uterus hanging out where it shouldn't, so went ahead. I do hope all goes well with both of us. Best wishes Heather
Hello Heather, thank you so much for your reply. Gosh you have had your troubles too. I do hope the recent op works well for longer than a year this time. I’m gradually coming around to the idea of perhaps leaving the op as I must admit the pessary does work. It’s just I am suspicious it’s the reason for the urine retention and worsening SIBO, but Prof Denton does think it’s a scleroderma problem. What I don’t want is to make it worse. I do hope you recover well from your operation. You must be still recuperating. All the best wishes Sue
Thank you for your kind thoughts. Have you thought of finding a pelvic floor physio is specially trained to help strengthen or rehabilitate pelvic floor muscles? It won't do any harm and seeing they specialise in the pelvic floor, may be able to help. (they were unable to help me, but were very nice dealing with my 'intimate area').
Yes I did see a pelvic floor physio nurse (not sure if she was a nurse or physio) on the NHS when I only had slight prolapse problems and did retain some urine even then. I have thought about finding a pelvic floor physio again. I do do an easy Pilates class with a trained physio but it’s a general class really. Apparently the exercise the ‘nurse’ taught me (holding in your pelvic floor for 5 seconds) can make a prolapse worse so it’s a case of finding right person. Good suggestion, thank you.
Hi there. It’s strange reading your post because I have a somewhat different diagnosis - but all you describe could be me.
The difference is that the focus for me is on my bowels rather than bladder. I’m getting sent and strongly advised to try bowel irrigation now, despite having a bladder prolapse rather than a rectocele - not that anyone has checked. I do sometimes get urinary retention but mostly I empty very well and plentifully.
I’m in Scotland so don’t have access to such a top CTD/ SSc doctor as Professor Denton. However I’m having a cystoscope tomorrow morning to see if they can find out what’s been causing trace blood in my pee for years alongside intermittent pelvic and left loin pain with UTI-like symptoms (not infections when cultured) plus leukocytes when I flare.
I keep asking for help from colorectal who I’m under and gastro for gastroparesis - but I get nothing really apart from a dietician if I leave a message and fortified drinks for a mostly liquid diet.
I wanted to see if I could have a stoma fitted because I’m so fed up with being advised to self irrigate with peristeen which I haven’t had the confidence to even try when I’ve not had a manometry yet or seen anyone for exam for a few years. A grumpy colorectal nurse sent me a booklet for stoma for a “reality check. Personally I don’t think my reality is good enough for her to say this and I do usually manage to force transit with Linaclotide and Senna. But I’m housebound with diarrhoea when this works or if it doesn’t work I’m in pain with build up of both fluid and mass.
My diagnosis is Overlap CTD - they say predominantly Sjögren’s - but I’m only seropositve for systemic sclerosis and personally I think it’s Scleroderma which is evolving rather rapidly from top to tail in my digestive tract and the Sjögren’s in my renal and urinary tract because I’ve had Sjögren’s and urinary issues for longer. I’m on Mycophenolate 3g and lots of other medications and get Iloprost infusions so I guess my rheumatolgist is taking a belt and braces approach regardless.
I’m also waiting for a CT from thorax to pelvis to hopefully exclude Sjögren’s related lymphoma from the equation. No answers about the catheter but if my main issues were urinary tract related I’d be thinking along same lines as you. More worried about getting a stoma because of the complications and associations. X
Hi My friend who has scleroderma had a stoma eight weeks ago and says it is so much better and she wishes she had had it done ages ago as she was practically housebound. I also have scleroderma and not only have a bowel prolapse but also have to irrigate everyday. I’m waiting to have the prolapse repaired. I’ve had it done twice in the past and it never last very long. I will try once more before considering a stoma. Good luck with whatever you decide x🙏🏻
Thanks. Do you use a peristeen to irrigate if you don’t mind me asking? If so is it uncomfortable? Mine’s been sitting unopened since February🥴
After a whole day in with bowel incontinence/ diarrhoea due to a few days of not “going” despite meds I’m thinking I’m going to have to watch the peristeen video online and be brave. Qufora does nothing and I wanted not to worry while having my cystoscopy tomorrow morning but ruined weekend hovering near my en-suite without even a dog walk isn’t a life really.
Hi, yes I use a Peristeen - I have had it for about three years and it totally changed my life. I use it every morning. I find it doesn’t hurt and I can now go out without worrying. I am slightly concerned that if I have the prolapse op it will be too painful to do it until I heal. My bowels don’t work at all unless I use it and walking the dog would be a nightmare as I would be incontinent. I hope that helps you . If you need anymore help I can always give you my number . Good luck x
Oh wow this is so helpful of you and I am now inspired to go ahead with it. Thanks so much! I’ve been worrying my head off about it. I will PM you with one question so as not to hijack this post. 🙏🏻😊
You might like to try Symprove for the gut. Good bacteria etc., Find details on the web. Quite expensive but a really excellent product. However, try v small quantities (below recommended amount) for a while to see how you get on. Say with some water straight afterwards, but no hot drink for 10 minutes before or after.
Hi Chalupa, yes I’ve tried Symprove and numerous pre/ probiotics. Unfortunately this one and all the others make me worse. The only thing I can tolerate is Saccharomyces boulardii. When I’m in a good phase I can also eat some yogurts. I’ve seen a herbalist with a qualification in Functional Medicine but many things she suggested didn’t work. Unfortunately I think alternative medicine can help, if you and the practitioner are lucky, but it’s like looking for a needle in a haystack. Thanks for the suggestion though. It may help others.
Hello I am new to the site and came across your post. I have had Ehlers Danlos all my life and developed/triggered Diffuse scleroderma following long Covid three years ago
I had prolapse repairs to my vaginal wall front and back 19 years ago and the surgeon also removed my neck of womb/cervix. She didn’t want to carry out a full hysterectomy and risk vault collapse and was anti the use of mesh thankfully. This all proved very successful.
I have over the past three years had treatment D&C for complex hyperplasia of the womb and bleeding which my Rheumatologist doesn’t think is related to scleroderma but I feel that it probably is.
I do hope that your health has stabilised after such a torrid time. X
Sorry to hear you’ve developed diffuse Scleroderma. I’m still UCTD with scleroderma gut problems. I was told likely limited systemic sclerosis but in my last appointment the consultant said it wasn’t because my Raynauds wasn’t that bad and I’d be deteriorating quicker if it was. It just so happens I’d had a good few days but went down hill after seeing him! He has added hyper mobility and Erythromelalgia to the mix.
I’m still really suffering with the gut problems and taking regular antibiotics which work sometimes, especially Rifaximin which enables me to get some gaps. Weight has stabilised but still 46 kilo. Regarding the prolapse, I still haven’t had an op although after my last appointment I did consider it as surely if my raynauds was not that bad I would heal well. I looked up my original urologist letters after I’d had a cystometry. In the letter afterwards they said I had a neurological or floppy bladder which is not caused by a prolapse. I did have problems before the prolapse so I suppose this is why. I suppose this is why my rheumatologist has said all my problems are Scleroderma. So I’m still self catheterising as it sounds an op would make no difference. It’s a real struggle as this works with the SIBO it seems.
Funnily enough I had to have a d&c when I was first ill but this was fibroids I believe. I don’t know much about hyperplasia of the womb but any sort of thickening sounds suspicious re scleroderma.
To answer your last point I suppose things have stabilised to some extent in so far I get some gaps and I’ve accepted changes to my life and found good things I can do. Incidentally, one of the things I’m plagued with is dizzyness and crossing roads is a nightmare turning my head etc. I wonder if it’s a neurological problem too.
There is someone else on this forum by the way with recently diagnosed Systemic Sclerosis and has had EDS for years but expect you’ve seen.
Do hope you are getting good treatment and your illness has stabilised too.
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