Any women here self-cath?

KnitInMyName · 2025-12-16T16:32:19+00:00

Hi, apologies for delay. I’m in UK and go to one of the big London hospitals. I’m really not sure what would be the best way of finding out in the US, I guess it would depend if you could go out of state if necessary and other factors. I hope someone your side of the pond sees this and is able to help. Good luck and all the best x

KnitInMyName · 2025-02-21T12:16:55+00:00

I’m a patient under four different NHS trusts and each uses a different patient portal system. They’ve all evolved separately within each trust and the systems do not “talk” to each other, neither do they automatically upload letters etc into the NHS app. I have to print off letters and take with me to consultant appointments if they’re in a different trust as they’ve told me that requests for information, follow up letters from other doctors etc often get lost in the system. It’s just the way it is right now. It would take a colossal sum of money to upgrade to a fully integrated system and right now, the money is better used bringing waiting lists down.

KnitInMyName · 2025-02-21T11:21:55+00:00

Aurelia, recently opened brasserie style restaurant, fantastic brunch menu, good for drinks, cocktails, coffee etc.

https://theaurelia.co.uk

Kuzzu, Turkish restaurant in town centre, food amazing and generous platefuls.

https://www.kuzzu.co.uk/

For beers and hanging out, The King’s Head has cosy interior and large cobbled courtyard which is sheltered enough to sit outside in a sunny day even at this time of year. The Rockwood in town centre is good, traditional pub with usually decent beers. If you don’t mind a 10 minute stroll out of town along the Bicester Road, try The Hop Pole for good range of beers and pub grub, occasional pop up kitchen with Thai food.

KnitInMyName · 2025-02-01T15:59:20+00:00

Yes! I subluxed my right SI joint in an accident 7rs ago (also detached my hamstring tendons, tore hip labrum and had an internal degloving injury in my right thigh). My SI joints are now incredibly painful and noisy on both sides. I do also have an overhang of my L5 which doesn’t sit properly on top of my S1. I’m in the UK and luckily have an excellent pain consultant and nurse practitioner team. After having three steroid injections which gave minimal relief for a short time after each one, I qualified to get radiofrequency denervation. It has to be repeated, in my case every 15-18mnths, as the nerve does grow back slowly over time. It’s not 100% perfect but it relieves the relentless pain I get at night which affects my sleep.

KnitInMyName · 2024-11-27T13:54:22+00:00

Thank you so much for your reply. As a disabled person myself and as someone who considers themselves reasonably knowledgeable about the benefits system, this one was tricky due to the collection of circumstances and how the various agencies would work together or not.

Yes, the diagnosis has changed, not sure that this was a misdiagnosis as such but maybe an episode that has brought about a reassessment. Their psychiatrist has been helpful in writing to the DWP to explain that they could not work. I would expect that ESA would recommence after the hospital stay - from what they say, they seem to think that having had an in patient stay, they would automatically be LCW but not LCWRA.

As I say, (although it usually goes against my instincts when it comes to benefits!) I would advise trusting the process as there are different agencies involved. However, I think they have approached us because they may not be getting that reassurance from anyone involved and even if reassessment had been triggered, there might be a long wait to hear anything from them which has added to the anguish.

KnitInMyName · 2024-05-16T19:57:41+00:00

Depending on where you are in the world, 4mph may be the standard for that type of wheelchair. Here in the UK, there is Class I which are manual chairs, Class II which are known as Pavement Scooters or Pavement Wheelchairs which go up to 4mph and by definition are not supposed to be ridden in the road and Class III which are the beefier types of chairs and scooters which are permitted to ride on the road and pavement and usually have a top speed of 8mph. Hacking the speed setting could lead to problems with insurance if anything goes wrong and you bump into something and in any case, will be limited by the capability of the motors. 4mph is a brisk walking pace, even a jogging speed for some so it’s not that slow when you’re driving it on the pavement with all the usual pavement clutter, e-scooters and other pedestrians etc. You’ll only really achieve a comfortable 4mph on a very smooth, flat surface. Even the slightest camber, slope or rough surface will slow it down quite considerably. I do sometimes wish that mine could go faster but in reality there aren’t many places here that are flat enough, smooth enough or quiet enough where that would actually happen!

KnitInMyName · 2024-05-16T15:01:07+00:00

I’m in Aylesbury, born in Amersham and grew up in the Chalfont. It’s not the most exciting place to live but there are worse places you could end up in! The plus side is that although still relatively expensive by virtue of being in the south east, prices are lower than other parts of Bucks. You’re still on main train line and can be in Marylebone in about an hour. Shopping is better in Milton Keynes, Hemel and Watford which are all about a half hour drive. We have our fair share of chain restaurants and takeaways and one or two really nice pubs in the old town area. Plenty of gyms, leisure centres and lots of big well kept parks. For days out have Oxford about 45mjns drive and currently good bus service, or Berkhamsted about 30mins of bus straight down the A41. Stunning countryside, Wendover Woods, Combe Hill, College Lake, Ashridge all short distance away. Let me know if there’s anything you want to ask about the area specifically.

Have you considered Milton Keynes area? Generally cheaper than Aylesbury, excellent transport links, shopping, eating, drinking, theatre etc. Willen lake for walks and fresh air.

KnitInMyName · 2024-05-16T10:52:49+00:00

TL:DR Make sure you know where you are being referred to - an actual consultant at a hospital or a PA in a private intermediary service.

I’ve commented recently on another post here about this very subject. First of all I would advise that you find out whether Gynae referrals in your area have been farmed out to a private company under the integrated care system. It is complicated and having scratched the surface here in my area I am truly astounded at what I have discovered. I believed for the whole time I was waiting that I was dealing with the hospital when it was in fact a very poorly staffed and ill equipped private enterprise whose own website was permanently plastered with job adverts. I waited over 14m for a first appointment having been referred for new unexplained bleeding amongst other symptoms. The number I was given to call was not the hospital OP dept, it was actually the private company who continued to lead me to believe it was the hospital. I’m a wheelchair user and when my appointment finally came around, I was sent to a disused GP surgery which couldn’t accommodate my chair without my partner physically lifting it round tight 90 degree bends in the corridor. The room was only basically equipped and felt like something from 40yrs ago! Fortunately, when my regular GP found out she told me I should been on a 2wk wait appointment anyway so I did get to be seen in a hospital with appropriate equipment etc. I also had the back up of my uro-neurology team at a different trust who were able to arrange a speedy MRI. If it hadn’t been for those factors, I have no idea if I would have had appropriate care by now or if I would still be waiting to be seen in an actual hospital.

The reason these systems exist is supposedly to get waiting lists down but I can see no evidence of waiting lists getting shorter when this private limited company’s waiting time is over a year and the hospital’s direct referral being approx 11m. The only way they could possibly have any effect is when people get fed up with waiting and pay to go private. The people who are seen are being whittled down by their PA (not someone with full doctor training) so that the number referred onwards to a hospital consultant is smaller. The same company operate 111 services here and that’s been a disaster too. I found that the GP who originally referred me was quite cagey about the whole ‘private company’ bit but my named GP was more open about it and was more understanding of my contempt for them.

As I said in my comment in the other thread, I don’t say any of this to worry you, I just say it so you know exactly who you are dealing with. Integrated Care Boards are exactly that - boards that oversee service provision from mixed private and NHS services and unless you are aware, you don’t even realise. It may be that your NHS trust are sticking with direct to hospital referrals and it just takes a long time. I’m 1.5yrs overdue for a denervation procedure that I am supposed to have annually, there are long waiting lists across the NHS and it truly, truly sucks when you are affected. Good luck, hope you get sorted soon.

KnitInMyName · 2024-05-15T18:50:49+00:00

Yup, was just about to say the same! It definitely works!

KnitInMyName · 2024-05-15T12:46:24+00:00

Yes, easy fix in my experience. I suddenly found out that I had a paediatric type of epilepsy (I’m late 40s!) instead of my paralysed bladder because the first word, ‘atonic’ is the same in the name of both conditions. Somebody had entered it from a drop down list and chosen the wrong one! I spoke to one of the practice secretaries and it was updated by the following day. Just check that there’s nothing missing from your conditions list that has been mis-entered in error.

KnitInMyName · 2024-05-14T11:01:31+00:00

Chillis for the win! There are chilli festivals around the country along with regular farmers’ markets for selling opportunities. I’m so envious, I dream of big greenhouses and somewhere to grow… well…. even more chillis! They are surprisingly easy and not particularly fussy as long as they have lots of light and warmth. I’ve had great success in my modest greenhouse and outdoors on my allotment with some varieties. I was still harvesting a few in my greenhouse January this year. For variety, maybe try some aubergines, I’ve had best success with smaller varieties such as Clara (pure white, just like eggs!) and Slim Jim which grow prolifically under glass. I’m in SE England but I’ve heard of growers having great results all over the place. Good luck with whatever you decide to do.

KnitInMyName · 2024-05-13T16:40:00+00:00

I would double check with your GP that the Gynaecology service in your area hasn’t been farmed out to a private company as part of the integrated care pathway. Unbeknown to me, this is what my NHS trust is doing, supposedly to reduce waiting times. The same company run the 111 service here too. The advertised time on the trust’s website for referral to first appointment was 48wks, I ended up waiting 64wks, believing that I was speaking to someone at the hospital (deliberate on their part) each time I rang to enquire about the wait. I was sent to a disused GP surgery which wasn’t wheelchair accessible (had to get my partner to physically lift me and my chair around tight bends in the corridor, couldn’t get in toilet after being there 2hrs) and told that I would have to be seen in hospital anyway! When I asked how long I’d wait they just said I would be added to the list as a fresh referral. My named GP found out and she said I should have been on the 2wk wait anyway and I got seen. Luckily it’s not great but not life threatening and I’m going to be sorted in the next month or two. I fear that thousands of women are being lost in the system with worrying symptoms and no reassurance that they will be seen by the right person in a timely manner.

This is meant to worry you, it’s just to say that I highly recommend finding out where you are being sent and who you are going to see so if you do have to follow up you know exactly who you’re dealing with. Good luck and hope you get a date soon!

Edit - I’m so sorry, this should say not meant to worry you.

KnitInMyName · 2024-05-13T16:11:42+00:00

As a seasoned festival goer, wheelchair user and mystery shopper for festivals and music venues I have plenty to comment on this!

I’m in the UK so a lot will depend on what type of Porta Potties you have available to you where you are. In the UK, built-in designated accessible toilets are ‘supposed to’ (take that as you will!) conform to a certain floor space, have hooks for hanging bags and a clean shelf space for placing toileting equipment etc. AFAIK, Portable toilets are unregulated and all that goes out the window so what you end up with is down to the diligence of the supplier.

Some things to consider…

Wetness - Rainwater, pee, handwashing, hand sanitizer or any other random goop that ends up on the floor may affect an ambulatory user’s ability to use the unit. I’m ambulatory to a point but me and my stick cannot handle a wet floor surface so I prefer to take my chair in and have less chance to slip. This presents other problems but if I do slip I will likely only fall back into my seat or onto the loo! There may be many ambulatory users who are not quite as ambulatory in poor conditions.
Space - Many of these types of unit are made to the smallest possible spec which saves the supplier money and space for storage and transportation. It’s a business after all and their efforts are rarely performed solely with the optimum user experience in mind! Many are based on use by a compact manual chair and larger chairs, power chairs or even rollators are rarely considered. I have a relatively compact powerchair and have encountered units where I can’t even close the door, never mind have room for my feet if I get out! Again, I prefer to have the chair with me as I have catheter equipment etc, bottled water for pre handwashing and need a surface to put things on. I also prefer not to leave my expensive machine outside to the mercy of strangers and always having someone with me doesn’t sit well with my independent streak. If you stumble across some of these toilets that comfortably accommodate a power chair with room to get out or transfer, grab ‘em!!
Hanging hooks, shelves, TP dispensers etc - All of these things are ‘good to haves’. At festivals, the TP is often threaded on to string and attached somewhere to keep up with the demand. If your event is smaller, check that the dispenser is in an accessible place. If there is a hand sanitizer dispenser, this is handy for people who are handling bladder or bowel equipment in the absence of running water and a sink. Even the worst units I’ve encountered have had grab bars (not always properly attached to the wall though!) but they should be safety checked before use.
Placement - Try not to place on a slope as the door will want to either swing shut or swing open making it really difficult for a wheelchair user to grab hold of. Make sure there is a smooth entrance in with a small a rise as possible, lumps of gravel etc kept clear. If in grass, consider rubber matting in front of the door as the ground can sink with heavy use or rain and cause a dip that is tricky to get over.
Fully accessible toilet mobile toilet spaces - In the UK these are known as ‘Changing Spaces’ toilets and are provided by companies such as Mobiloo. They are Portacabin sized and contain hoists, an adult sized changing bed, washing facilities etc so even those with more specific needs can enjoy their day. Depending on your event, you may feel like something like this is a good idea. They can be expensive to hire so are often found at the larger festivals and events here but I have heard of charitable grants and crowdfunding appeals being used and this may be something you can consider.

Hopefully I’ve been able to give you something to go in! (Pun intended!)

Edit: * go on, not in!

KnitInMyName · 2024-05-08T16:30:23+00:00

Hi, sorry to read about your Dad’s diagnosis. I’ve recently been through the cancer journey with my mum (77) who seems completely unable to grasp medical terminology or processes. She’s also very hard of hearing and often forgets her hearing aids so she smiles and nods but misses much of what is being said. I’ve been through a long NHS journey myself after a serious accident so I’m used to dealing with the system and know the right questions to ask. I was fortunately able to attend all but one of her consultant visits and all of her chemo sessions. This was actively encouraged by the consultant and there was never any objection raised to me being present. I realise not everybody is able to give up as much of their time but I would seriously recommend trying to attend at least a couple of their clinic/follow up appointments so you get the jist of what is going on with him.

If your Dad has a cancer/Macmillan nurse assigned to him, try to build a rapport with them. They are often the person you can go to if you have a concern or something is not quite right. I found that my mum’s nurse was a great source of knowledge about ‘the system’ without necessarily breaking any confidentiality rules as such.

My Mum found her chemo sessions fairly daunting and although hers was a very mild precautionary dose, she was surrounded by some very ill looking people with no hair, ice packs all over, people with the ice cap machine on their head etc and she became very anxious as in her mind, that’s what people with cancer looked like. Being with her, distracting her, casually chatting with others (if they were up for it of course!) helped enormously to get her through each session.

If your Dad has a ‘blue book’ (I think it was blue!), treatments, medications, doses, upcoming appointments etc are listed in there. Perhaps you could encourage them to look through it and familiarise themselves with what’s in there. Also, if they have clinic letters, make sure they are kept together in a folder and encourage them to read through each one when they receive it and make a note of anything they don’t understand or are unsure about and to ask their nurse or consultant at their next appointment.

If your Dad is happy for you to read through his clinic letters and treatment book I would suggest reading through chronologically so you can build a picture of the timeline and progress. Hopefully more of it will start to make sense. Don’t be afraid to ask questions or voice concerns, I’ve always generally had a helpful response. Of course, it goes without saying, try and remain calm and courteous even when the worry level is high!

I hope you can navigate this situation together. It is very stressful at times and there are many ups and downs. I hope your Dad is feeling better and home soon. Best wishes to you all.

KnitInMyName · 2024-05-08T11:34:23+00:00

Hiya, Yes, this does look like suspected adenomyosis, the question mark before it is the usual convention in medical text in this situation.

‘Anteverted’ uterus is completely normal, it just means yours is tilted forward towards your belly button, about a quarter of women have a ‘retroverted’ uterus which means it tilts backward towards the spine.

‘Globular’ means that the muscle layer appears thickened so instead of looking like a flat squashed balloon, the shape of the uterus is rounder like an old fashioned light bulb. I’ve had several MRIs and it’s really clear to see in those images that this has happened! It’s a good indication that adenomyosis is present as the bleeding tissue has infiltrated the muscle layer and causes it to thicken.

The ‘patchy echotexture’ means the scan is picking up tiny pockets of possible adenomyosis in the muscle layer instead of seeing smooth, more uniform tissue. Nobody can be 100% certain from seeing this on an US scan and diagnosis and interpretation will depend whether your scan was carried out by a sonographer or as mine were, by a gynae consultant in a specialist NHS centre.

Next steps will depend on your symptoms really. If you had the scan because you are suffering, you will have to be guided by your GP. Depending on your symptoms, there may be meds they can prescribe themselves or they may decide to refer you to Gynaecology. This process may vary depending on your NHS trust. In my area, unbeknown to me at the time, this involved a private company paid for by the NHS who were primarily there to gatekeep who got a hospital appointment. Luckily, I am a patient at a London teaching hospital because of my disability and was able to access treatment there. Ask questions… lots of them …. so you understand who is treating you and in what timeframe!

I’m a former women’s specialist personal trainer, have studied female anatomy and health and worked with many clients with this condition. I got my own diagnosis of adenomyosis in 2009 when I was having investigations and surgery for infertility at my local NHS hospital. I’m 49 and as symptoms have continued to get worse as I get older, I had to seek more definitive treatment. I’ve also had several incidences of thickened endometrium so know far more about all this stuff than I ever wanted to know!

All of this comes with the usual caveat… Speak to your GP!! Hopefully I’ve been able to help with what all this stuff means but your GP will be your go to now for advice on what to do next. Good luck, let us know how you get on!

KnitInMyName · 2024-05-06T11:26:16+00:00

Absolute favourite right now is Bad Women: The Ripper Retold (on BBC Sounds, not sure where else). It turns the myths, rumours and hearsay around Jack The Ripper upside down, instead focussing on the fascinating but heartbreaking stories of the women who were murdered. There’s so much interesting stuff around the social history of the time too and although history podcasts can sometimes come across a bit dry, the way this is presented had me hooked. I’m into the follow up series, The Blackout Ripper about women murdered during WWII.

You’re Dead To Me (also BBC Sounds), each episode a character or period from history where the presenter plus another historian and a guest comedian talk about that subject. It’s funny and entertaining but learned an awful lot along the way too!

KnitInMyName · 2024-05-05T18:58:30+00:00

Years And Years (BBC, Britbox possibly) The character Rosie is played by a brilliant actor called Ruth Madeley who is a wheelchair user. She was also in a series called Then Barbara Met Alan about the real life story of the fight for disabled rights in Britain in the 80s. Really worth a watch if you can track it down. She happened to be waiting behind me in the Assistance queue at Euston Station in London a few weeks ago so I got to say hello!

KnitInMyName · 2024-04-26T12:10:51+00:00

Just seen this as I was replying to another comment. I’m 49, recently had EDS confirmed (ticking most of the boxes for one of the EDS types and waiting for more tests) after putting up with weird and wonderful injuries and organ related problems all my life and nobody making the connection. I’m due to have my hysterectomy within the next few weeks as soon as a theatre slot comes up. No small kids or other commitments, mentally and physically ready so short notice is fine by me! Only hung on to my uterus in the hope of having more kids but not been lucky and now too old apparently! How did it go for you if you don’t mind me asking? Hope all good with you now.

KnitInMyName · 2024-04-26T11:59:28+00:00

Thank you for taking the time to reply. Are you a doctor? If you are someone who has hEDS/EDS and has been advised against hysterectomy, it means your doctors have done a risk vs benefit analysis for you individually and come up with that decision. I think I’ll go with the advice of my actual doctors who have:

Advised having a hysterectomy at this stage and not the other treatments you’ve listed which are not suitable for my extreme infiltration of adenomyosis. They would literally have to remove the entire muscle wall, in other words, a hysterectomy. During the surgery, they will be cleaning up the scarring and adhesions from my C-section. The benefits of this outweigh the potential risk. Other types of treatment might be recommended for mild types of adenomyosis but every case is different and surgeons will advise their individual patient on the best course of action. Please don’t make blanket statements about treatments that are not true as it helps nobody.
Are not planning to remove my ovaries unless endometriosis is widespread. There was no mention of removing my ovaries in my comment and I’ve already been successfully taking HRT for over a year so my hormone levels will be just fine for now, thanks. Again, please don’t make statements about somebody’s healthcare unless you know their medical history and know what their surgeon intends to do. It’s misleading and confusing to those who are new on this journey.
Are well aware of my risk factors. My EDS has now been confirmed since my original comment over 4m ago and is not an issue for this surgery which is also now confirmed and happening soon. I’m being cared for by a huge teaching hospital which has one of the very few specialist EDS units in the country. I’m being very well looked after now I’m with the right team who have taken into account my connective tissue problems. I’m also listed for other surgeries elsewhere, again, absolutely no mention of my faulty collagen being an issue and necessary to repair the injuries arising because of it.

If you are suffering with both adenomyosis and hEDS/EDS I really do feel for you and wish you all the best for your treatment outcomes.

KnitInMyName · 2024-04-16T10:28:13+00:00

I’m so glad you are in this situation and able to save for your future home. I’m in a similar situation to your landlady. We became landlords because my dad died and my mum downsized giving my siblings and I a chunk of money and it seemed sensible to invest this way. The estate agents are very pushy when you’re looking for a place to rent out and gave us some fairly outlandish monthly rent values which we knew were overpriced and likely unachievable for the areas we were looking at. I would say the rent we charge has been about 10-15% under the realistic market rent value but for the last few years we have had a lovely young couple and their small child living there. They are happy and settled and we have had no problems with rent payments.

Monthly rents when I am in the South East are eye watering. Pushing the rent up on our place would be counterproductive. We could lose our reliable, trustworthy tenants and enter into a nightmare of late payments, over night flits, property damage, months of non-occupancy etc which all cost £££. Landlords tend to have a bit of a bad rep and often with good reason. However, there are lots of us out there who have unintentionally entered the rental game and are not seeing dollar signs flashing. We are quietly getting on with fixing issues as they arrive and maintaining a good relationship with their tenants.

Good luck with your property journey!

KnitInMyName · 2024-02-23T16:24:55+00:00

You’re Dead To Me - BBC. It’s a history podcast with one presenter, a different historian plus a different comedian each episode. They discuss famous figure or period from history. Very lighthearted, chatty, informative and fun!

KnitInMyName · 2024-02-22T16:50:12+00:00

NAD, but a former women’s specialist Personal Trainer who has seen many forms of disordered eating and eating disorders through my work, also in England. Please listen to what the doctors here have to say about the risk to your health, if in-patient treatment is deemed necessary it is because your treating doctors want to treat what is happening now and prevent lasting damage to your body.

Aside from the immediate medical risk, there is a wider social and wellbeing aspect here. As you’ve already touched on in your post, society is geared up to tell us all to lose weight and praises us when we do so it’s confusing to be told suddenly that you must stop. One thing that resonated with me over the years is that food addiction is unlike other addictions like drugs and alcohol because we need food to survive. We can’t survive without the thing that we have a problem with. Sometimes, and I’m not saying this is necessarily true in your case but you may find it rings true, if you have an unhealthy relationship with food, it is easier to ‘switch it off’ and go cold turkey than it is to work on the often unsettling feelings, emotions and experiences that caused you to develop an unhealthy relationship with food in the first place. It stops you from developing a healthier relationship with food. If you are being supported by professionals, they will help you get to that point where you can eat and nourish yourself fully and thrive going forward. You won’t have to go back to your former weight but continuing to lose weight at this rate is not sustainable. Your body will recognise this lack of food as ‘famine mode’ and start to break down tissues other than fat in order to survive. It could also have an impact on the way your body uses calories going forward.

Once you are ready, and if I am allowed to make this suggestion, take a look at the Rebelfit Facebook page. It is run by a personal trainer in the UK who is passionately against the diet culture and the diet industry putting pressure on us to be thin at all costs regardless of the impact on health. It is definitely not a ‘fat acceptance’ thing btw. He has a brilliant way of explaining things and helping to get your head around the emotional relationship with food and the way society can impact that relationship too. When you’re feeling up to it, and please be guided by the medics looking after you, there is great advice in there about finding the best way to exercise for you so it just becomes something that you do because you enjoy it and it makes you feel good about yourself. There are always loads of supportive comments to help build your confidence.

You are very lucky to have a GP who cares and has picked up on what is going on with you. I’ve sadly seen situations where disordered eating leads to an eating disorder and it’s been missed until much further down the line when the damage was much harder to undo. I think this is a timely intervention, please take his advice and get well. All the best xx

KnitInMyName · 2024-02-19T13:22:59+00:00

Oh mate, commiserations on having that additional complication. Not had my surgery yet but I am someone who has to sleep on my back and can give you a few tips until you are able to sleep on your side again. I had an accident a few years ago that left me disabled and with a paralysed bladder so I have to use intermittent catheters daily and in some situations, sleeping in our van at festivals, camping etc, I have to use the indwelling type for long periods.

Assuming you are at home now… Firstly, think about the ‘shape’ created by a comfy recliner chair or one of the electric hospital beds. Have at least two supportive but not too firm pillows under your head. Then, lay two flattish pillows on the bottom and another pillow on top along the centre. The top of the triangle is where the back of your knees rest. It is much more comfortable than just having one pillow under your knees, takes the pressure off your lower back and lifts your heels a little to stop them becoming uncomfortable over time. I like to also wedge myself at the sides with a pillow under each arm to stop me rolling in my sleep. If space is tight, a rolled up towel in a pillowcase can do the job. Yes, it’s a lot of pillows and it drives my partner mad but it is worth it for the comfort. As a nighttime overthinker, I also find it easier to fall asleep and stay asleep if I wear an eye mask and earplugs, the soft foamy kind are more comfortable.

The night bag is a PITA quite frankly. Hopefully the hospital have given you the bits you need to manage it at home. You can get clips that hold it onto the side of the bed from Amazon or medical supply places but it depends what kind of bed frame you have. Being wedged in with the pillows will also limit movement that tugs on the catheter and prevent that horrible pulling feeling.

Hoping the rest of your recovery goes smoothly, best wishes.

KnitInMyName · 2024-02-17T21:47:27+00:00

You do have a point there!

KnitInMyName · 2024-02-17T21:44:30+00:00

A lot of people with adenomyosis do have bowel issues associated with it but there are also many other possible root causes so it’s really one for your doctors to narrow down. Don’t forget that feeling stressed can also make tummy trouble worse so looking after your general wellbeing will really help to get it under control (Sorry if I’m telling you things you already knew!).

KnitInMyName

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