I'm feeling totally deflated tonight. I couldn't get an appointment with the GP regarding my bladder prolapse so after exhausting every avenue to get advice I went to the walk in centre. Well I wish I hadn't. I was made to feel so small and if I was complaining about nothing as many women walk around with prolapses suffering incontinence and shoving the prolapse back up with a tissue rather than see their GP. I bet they don't have a body that's falling apart with all their insides with it or suffer chronic pain daily as a result of their conditions. I even contacted the bowel and bladder foundation for advice, as I thought what better place to go to, but because of the complexities caused by a connective tissue disorder declined advice asking me to seek support from a specialist. I am fighting so hard to keep it together, go to work, run a household, support my husband through renal and heart failure, as well as try to support my kids but no one will take collective responsibility for everything that's going wrong with me. In my line of work we have a duty of care to the adults we support but where's that duty of care when it comes to me? It's non existent. I've not slept more than 3 hours a day for days due to the ongoing issues with my bladder and bowel and this has increased the issues further. I have to strain to move a bowel movement, which forces the prolapse further down, and half the time I'm having to strain to pass urine. I feel as if I need a wee all the time and with the bladder always in retention the prolapse is making that worse. I could cry but know if I do that I won't stop. I've been told not to go to A&E as I'll be turned away as its not considered an emergency. I'm so sorry to rant, as I usually smile through things, but I'm finding that much more difficult. Xx
Prolapse Rant: I'm feeling totally... - Ehlers-Danlos Sup...
Prolapse Rant
So sorry to hear you feel so bad. Wish I could be of help. I'm sure someone will offer you guidance. 💐
LoupyLou, this is simply not good enough. Are you not able to book an appointment with your doctor at all? Did you tell the walk in centre about the problems depriving you of sleep? Now, I can't remember - have you officially been diagnosed with EDS? If you haven't, then you need to see a rheumatologist and be officially diagnosed. If you have then you need to be referred to a urogynecologist and find out what your options are. The quicker you get referred, the quicker you're seen, but in our NHS there was a LONG wait so I went private to get a prolapse pessary fitted, then went over to the NHS. If you can afford it - around £250 but this can vary hugely so you would be as well to phone the private hospital you'd like to go to and ask how much it would cost, they will tell you your options there and if you choose a prolapse pessary they can fit it. But there is absolutely no reason why a doctor should tell you to just ignore this and get on with it! That's disgusting! They DO have a duty of care. If need be, speak to the practice manager of your GP. If I can help in any way, please say!
Hi, Thanks so much for responding. I had a GP appointment at 9:15 this morning. The outcome is that I've probably got another UTI and prolapses don't cause the difficulties I'm experiencing so she thinks it's likely that it's the current bowel and bladder conditions that are worsening. I mentioned self catheterising and pessaries but she jumped over the self cathing and said the prolapse seems small. She read the notes from the doctor who examined me. It certainly doesn't feel small. Large is apparently falling out. I've finally had a call today about a rheumatology appointment and I'm seeing the specialist nurse on the 24th May. They have the GP letter that states my diagnosis needs to be upgraded to EDS from JHS and a referral needs to be made to UCLH Hypermobility unit. I've waited since May for this referral. There's been no mention of a urogynaecologist. I'm not even sure we have them in Colchester. I'm still not convinced that it's not prolapse related as getting up in the night has definitely increased since I noticed it. She also said it's usually there for some time before it poses an annoyance. Xx
Now, firstly, I'm not a doctor and secondly I've not examined you LOL! BUT I have certainly heard of of these issues being linked to prolapses! Can I suggest that you join this group: patient.info/forums/discuss... . I used to be on it but I'm not now, but there are very experienced gynie nurses on there and they will let you know if the bowel and bladder issues are likely to be linked to the prolapse. My inclination is still to think you need to see a urogynaecologist but see what info you can get from that group. There are certainly a lot of people on there with the same problems as you
People vary hugely as to how a prolapse effects them regarding bladder and bowel, I know that.
Thank you so much. I'll take a look and see if it's for me. 😊 It's really upsetting as I really don't think they're looking to support me but that I'm more of an inconvenience if that makes sense. Thanks again. Xx
I'm pretty sure you'll get the back up on there that you need. I really hope you can get this sorted before too long. Let us know how you get on
This is dreadful. I'm so sorry you're going through this ordeal, loopylou. And I feel totally inadequate in using that little word "ordeal", which hardly does justice to what you're coping with. The system has NO justification for treating you this way. This is enough to make anyone's funny bone feel very poorly.
I feel shy about making any suggestions. But you know I'm coping with my own complex abdo ordeal which includes prolapses. So, for what it's worth, here goes:
do you live in the UK? If you do, how is your area's NHS physiotherapy service organised, because in our region (east Anglia) the service is on a self-referral basis. I've only recently learned that all physio services should include at least one trained & certified Women's Health Services physiotherapist...and any individual can self-refer. I had to wait 2 months, but my first appt was 6 weeks ago in which she dealt with my gut motility. At my second spot 2 weeks ago she examined my pelvic floor & bladder prolapse. I have my 3rd appt this Thursday when she'll do the rectal exam. am already feeling significant inprovements (especially in my "connective tissue disease-related small bowel motility dysfunction"...yes: that's NHS-speak for EDH & Sjogrens related small intestine constipation: I thought I couldn't be constipated that because I have a good BM every day, but she explained my small bowel is the problem...and the pos response I've had to her small bowel rehab regime seems to confirm her theory!).
You may remember that I was given my NHS WHSP's name by my NHS urology surgeon who is still investigating my stuff (she started last spring). But I still had to self refer to NHS WHSP (and I specified that my urology surgeon wanted me to see this particular physio). This physio tells me she has several colleagues doing WHS work, and they're all good
Apologies if your regional NHS WHS physiotherapy system isn't self referral....cause then I guess you'll need to somehow see your GP for referral. I am a bit anxious that NHS WHSP may not be available all over the country...or maybe you're in Scotland or Wales.
Here is what our regional NHS Women's Health Services Physiotherapists do:
-Medical examination to assess pelvic floor muscle strength:
When I was first examined by WHSP in 2009, I'd been doing yoga, pilates and tai chi for years...even so my PFM strength wasn't as good as I’d imagined, and I benefitted greatly from the training I was given
-Medical examination for prolapse:
I’m having this now due to history of anal prolapse and persistent symptoms indicating several more developing down there
-Advice on self management and muscle re-education:
strength is as important as relaxation, expert help makes all the diff to getting the balance right
-Dilator training therapy for post menopausal vaginal atrophy:
In 2012 I had to see WHSP again because of a colposcopy injury. The rehab involved dilator training...which for me was vital on the 'use it or loose it' principle alone - especially if you’ve not had vaginal births, or are infertile like me (the NHS protocol for DES-daughters like me involves annual internal exams with colposcopy)
-PSWD:
pulsed shortwave diathermy helped my recovery from the colposcopy injury
hope you'll let us know how this all goes for you
🍀🍀🍀🍀🍀 coco
I'm in Colchester, so in East Anglia, but areas wishing it may have different services as there's many you've mentioned that I'm not aware of. I know that my pelvic floor is strong, I've always done the exercises, and the special yest they did for the bladder proved that the muscles were working and calling for the bladder to empty even after the sphincter valve closed. I'm going to need time to research a lot that you've mentioned to see if any of it is available. I had a funny turn today, it's a rare occurrence and I think probably due to stress, as I was standing on the kitchen sorting out paperwork and my heart felt like it missed a beat, everything went fuzzy, and I thought I was going to pass out. A check on my heart rate showed it had gone up to over 100. I usually sit between 67&72 when resting. I don't normally feel stressed, although anxiety I do feel, so I'm guessing that the last week is taking its toll on me. The trouble is, and I know you'll understand this, is that I'm at the point where I don't go to the doctors for things like this as I don't want to be seen as a nuisance. When I do go it's for something like the prolapse and I feel like an idiot for bothering them. Everyone had been so helpful on here and I hope that I'll be of some use to others. You all have a lot going on as well so I really will look into all your suggestions and appreciate the advice and calming words. Xx
I feel as if I do understand. And I'm v much feeling for you.
I live near Bury St Edmunds. My first 2 NHS women's health services physios were at Ipswich hospital in 2009 & 2012. The current nhs whs physio I'm seeing in Bury.
Who knows, you may find you can use this service...or maybe they can tell you how to contact a similar service in Essex?
Allied Health Professionals Suffolk
To self refer ring: 01473 770066
Or general enquirers 01379 873724
Hope you'll give us updates
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That's really great. Thank you. I will keep you all posted and feel very humble this evening. Xx
You're vvvv welcome...I feel humble too: it's vvvv moving when someone explains things as passionately as you have today: the pain, frustration and dismay that comes with living our lives while coping with EDH in a society that barely even knows our condition exits. keep your chin up 🍀🍀🍀🍀
You sound like you have really had enough and need some support and kindness. You have a lot going on and I am wondering if you should separate two things out and deal with them separately.
One sentence really jumped out for me: " I am fighting so hard to keep it together, go to work, run a household, support my husband through renal and heart failure, as well as try to support my kids but no one will take collective responsibility for everything that's going wrong with me."
Apologies if you have already done this, but are you registered as a Carer with your GP surgery? If not please do that as soon as possible, don't wait until you have sorted out your prolapse.
And have you told your GP how you are feeling? Just that one sentence above says it all really.
Many NHS CCGs have now realised that there is a lot that simple pills and potions doesn't solve, and that the health of a patient is greatly affected by what is going on around them. Some areas have something called social prescribing now that deals with the non-medical aspects of a patient. Have a look at your area to see if they are doing this yet, or ask at the surgery when you register as a carer for what other services you can get as a carer.
It won't solve the prolapse problem, but it might make things less stressful for you.
I'm not a registered Carer as with my own issues I feel they cancel that out. They are aware that I have running around to do to get him to and from dialysis and other appointments as his driving licence was revoked two years ago due to his failing eyesight. I work for adult social services and they are aware of my responsibilities but again I haven't formally registered on the social care systems. I do think I need to try and deal with things separately, or breaking them down into smaller chunks, but I have an issue with feeling as if I'm going to let people down or that I'm going to fall apart. I have always been quite strong and have kept the family and home going when everything feels like it's coming crashing down. I've always tried to maintain a smile. Hubby has never recognised my condition, or the continuing difficulties that have arisen, so I was totally shocked when he got so worried about the prolapse. For him, with all his difficulties, I'm sure he relies on me to keep things together so doesn't want to acknowledge everything that's gone wrong with me. I also have so many people that tell me I'm strong that I worry what they'll think if I fall apart. Unfortunately have a couple of close friends that I confide in so keep myself grounded that way. I don't want to ask for something like counselling through fear of looking weak. I hope that makes some sort of sense. After today's funny turn I have realised that I can't keep on going the way I have so I will try to pull on the support of family and friends more especially when they offer it. Xx
Do register as a carer with your GP. Nothing cancels out, they actually multiply together! I am a strong person too, always caring for others, sometimes formally and sometimes informally, and I think the stronger we are, the harder the fall is when it comes. Don't think about what others will think if you fall, they will probably not think badly of you at all. But you are right, you need to get more support and say yes when they offer it.
Does your husband get benefits like PIP/DLA? If so you should apply for Carer's Allowance. Even if you work over the limits and can't get any money it is worth looking at.
As you know how social services work whether it is worth asking for a carer's assessment is up to you. I haven't asked for one as I know the threshold is too high for us to get anything. But registering as a carer with your GP is different. The benefits can be very subtle, such as priorities for health checks, and even just a 'how are you' during consultations where they actually mean it. And a lot of surgeries are now realising that carers don't take care of their own health which in the long run costs more, so they are setting up programmes for carers to give them longer appointments with their GPs or nurse and support groups.
Although if you are like me, you will probably end up running the support groups!
Hubby is still managing to go to work through all of this but I think I will register with the GP practice as it might help me too so thank you.
He's lost 50% of the vision in his good eye today so has an emergency appointment this afternoon. He's had a massive bleed and as the sight in his other eye is non existent he can only see when looking down. He made me go to work and did everything by cab. I'll be home to take him to the hospital though. Xx
Oh goodness, I hope his eye is okay. It sounds like you are both looking after each other, which is great, but it must be a strain on you both too. I hope all goes well this afternoon.
Thanks so much for all your replies. I will respond properly later as the short break from work is nearly over. I'm in Essex, so East Anglia, but accessing what you've all mentioned is going to take some investigating. It appears that I have my second UTI within 3 weeks. GP feels that I need to wait until I'm seen by urology for those surgeries and gynae for the others. I'm diagnosed JHS but they wanted it upgraded to EDS. I'm still fighting rheumatology for an appointment. The referral was made back in May. Colchester hospital are useless. I'll message more later. Xx
A little update from me. 😊
I've been really struggling with sleep managing around 4hrs in total with up to 4 trips to the bathroom. I forced myself into work stupidly this morning in an effort to try to get some routine. With pain from head to toe and a chronic burning feeling in my undercarriage, whilst struggling to keep my heavy eyelids open, I headed home at just gone 11.
The good bit now. 😊
I had a call from the hospital saying that they'd recieved the updated letter regarding the prolapse and had a cancellation. As I'm considered to be an urgent patient I've been given the appointment on Thursday this week at 11:45. I am so relieved. Finally they must be looking into my history and realise that it's not one thing going on but loads.
Thank you all so much for your support and I hope you're all well as its been very quiet on here?
Sending gentle hugs,
Lou. Xx
Am delighted your clinic is doing right by you 👍🌟👏👏👏✌️
Looking forward to your next post!
🍀🍀🍀🍀 coco
Trying to figure it out
Stomach problems, possibly slow transit?
Endometriosis and EDS/HEDS?